Princeton Journal of Bioethics - Winter 2011 by Princeton Journal of Bioethics

Princeton Bioethics Conference November 12, 2011

PJB Princeton Journal of Bioethics Princeton Bioethics Conference Special Publication Presented by The Student Bioethics Forum

Dedicated to the discussion and contemplation of issues at the intersection of technology and society.

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The Princeton Journal of Bioethics Editor-in-Chief Bruce Easop ‘13 Senior Editors George Maliha ‘13 Joseph Park ‘13 Alina Yang ‘13 Layout Editor Kemy Lin ‘15 Webmaster Anjali Menon ‘14 Editorial Staff Arjun Dhillon ‘15 Anthony Ferrara ‘14 Michael Granovetter ‘15 Katrina Hacker ‘13 Kemy Lin ‘14 Joe Park ‘15 Bobbie Pelham-Webb ‘13 Anjali Menon ‘14 Prihatha Narasimmaraj ‘14 Jasper Ryckman ‘15

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Technical Review Board The Technical Review Board was created to review the student writing thereby ensuring the accuracy and quality of the Journal. We would like to extend our appreciation to these professionals who donated their time and expertise to our endeavor.

Martin R. Eichelberger, MD Professor of Surgery and of Pediatrics, George Washington University; Attending Surgeon Childrenâ&#x20AC;&#x2122;s National Medical Center, Washington, D.C. Eric Gregory, PhD Professor of Religion, Princeton University Irene Jillson, PhD Assistant Professor in the School of Nursing and Health Studies, Georgetown University Peter Singer, B.Phil Professor of Bioethics in the University Center for Human Values, Princeton University

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Foreword We are proud to present the attendees of the second annual Princeton Bioethics Conference with this special publication of the Princeton Journal of Bioethics. A joint collaboration between the Student Bioethics Forum and the Princeton Journal of Bioethics, this issue of the Journal includes sixteen papers written by undergraduate students from across the country, eight of which will be presented at this year’s conference. The articles chosen provide a broad cross!"#$%&'(&) ($*"(+",-(&) (.%&"$*%#!/(0%$*($&1%#!(23'4%'4()2&5(12"6%51,3'$3$%&'( 4"'"$%#(-%34'&!%!/($&(*753'(&243'($23)+#8%'4/($&($*"("$*%#!(&) (9:;($"!$%'4( standards. The Princeton Bioethics Conference was envisioned as a forum for undergraduate discussion of the compelling bioethical issues of our era and to highlight exceptional undergraduate research from universities nationwide. We +25,<(.",%"="($*3$(53'<(&) ($*"(7'-"2423-73$"!(12"!"'$(0%,,(*3="(3#$%="(=&%#"!( in the bioethical debates of the future, and it is our hope that this conference will help to start that conversation. We would like to acknowledge President Shirley Tilghman for enthusiastically agreeing to give this year’s keynote address; her steadfast commitment to both bioethics and undergraduate education distinguishes her as an ideal speaker to complement the conference’s 5%!!%&'>(?"(0&7,-(3,!&(,%8"($&($*3'8(@"$"2(A%'4"2/(:23(?>(B"#351(@2&)"!!&2( &) (C%&"$*%#!(%'($*"(D'%="2!%$<(E"'$"2()&2(9753'(;3,7"!(3'-(F3#7,$<(G-=%!&2( to the Student Bioethics Forum, for his indispensable insights into how to make our idea for this conference a reality. Thank you for your continued support and interest in the Princeton Journal of Bioethics and the Princeton Bioethics Conference. We hope that the presenters provide you with new perspectives to spark further debate and -%!#7!!%&'>(:$(%!(&',<($*2&74*(!7!$3%'"-(-%3,&47"(3'-(3032"'"!!($*3$(12&42"!!( in bioethics can be made, and we invite you to become an active participant in $*%!("H#%$%'4(3'-(231%-,<(-"=",&1%'4(+",-> Sincerely, Bruce Easop ‘13 Editor-in-Chief Princeton Journal of Bioethics

Kyle Edwards ‘12 President Student Bioethics Forum

iii

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The Princeton Journal of Bioethics Princeton Bioethics Conference - November 12, 2011

CONTENTS FOREWORD Bruce Easop ’13 & Kyle Edwards ’12 Princeton University

iii

NOOTROPICS: AN ETHICAL DISCUSSION* Lily Pham ’12 Duke University

ETHICS BEHIND HEALTH INSURANCE: IS RELIANCE ON EMPLOYER-BASED INSURANCE JUST?* Ban Wang ’12 Johns Hopkins University

THE ETHICAL CARE OF INTERSEX INFANTS: NORMALIZING GENITALIA AT THE EXPENSE OF WELL-BEING Alyssa Thomas ’13 Brown University

THE HARD CASE: ENROLLING DEMENTIA PATIENTS IN HIGH-RISK, NO-BENEFIT RESEARCH* Raafay Syed ’12 Johns Hopkins University

TOWARD A MORE OPEN FUTURE FOR ALL: MAKING A CASE FOR POSITIVE EUGENICS* Harry Chalmers ’12 Centre College

THE UNETHICAL NATURE OF MORAL OBLIGATION Lauren Mashburn ’13 Centre College

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ABORTION: THE DUAL DEBATE* Sophia Jih ’12 Princeton University

THE PURSUIT OF GENETIC INTERVENTIONS TO PREVENT GENE-BASED DISABILITIES: MORALLY OBLIGATORY OR OBJECTIONABLY IMPERMISSIBLE?* Natasha Mehta ’12 D'%="2!%$<(&) (;%24%'%3

SLEEP, SCHIZOPHRENIA, AND THE NEW SOCIAL FUNCTION OF DREAMS Megan Winkelman ’13 Stanford University

PRENATAL GENETIC ENHANCEMENT: PROVING OUR OBLIGATION Lexi Antunez ’14 Duke University

GENE THERAPY: LESSONS LEARNED FROM THE CASE OF JESSE GELSINGER Akash A. Shah ’13 Duke University

THE VOID WITHIN: GLOBAL HUMAN ORGAN TRAFFICKING AND THE HUMAN RIGHTS AGENDA Angela Groves’12 Princeton University

106

GIVE THEM THE PILLS! A RESPONSE TO RONALD DWORKIN Alexander Frawley ’12 Georgetown University

119

ARE THE CDC’S REVISED STANDARDS OF HIV TESTING ETHICALLY SOUND? Alex Niculescu ’12 University of Pennsylvania

123

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THE EVOLUTION AND PRINCIPLES OF INFORMED CONSENT IN POPULATION GENETICS* Santiago Jose Molina ’12 University of Chicago

128

COMFORT IN THE FACE OF DEATH: A COMPARATIVE ANALYSIS OF AID-IN-DYING POLICIES IN THE UNITED STATES, THE NETHERLANDS, AND SWITZERLAND* Taylor Purvis ’12 Yale University

140

* Articles to be presented at 2011 Princeton Bioethics Conference

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!"#$%&'()*#+$"#&#(,$-.$,.'$&#/#)'$'"#$0(#1+$.2 $'"#$ 3&(,)#'.,$4.5&,%*$.2 $6(.#'"()+$.&$('+$%27*(%'#+8

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Nootropics: An Ethical Discussion Lily Pham ’12 Duke University

f there existed an innocuous drug that could improve your cognitive abilities and performance, would you take it? Historically, humans have always spoken of a state of being beyond the human potential; a few examples are immortality, superhuman strength, omnipotence, and psychic power. Today, shelves on drug !$&2"!(3.&7'-(0%$*(1%,,!/(-2%'8!/(3'-($&'%#!($*3$(1721&2$"-,<(%512&="(:I/( 5"5&2</("'-723'#"/(3,"2$'"!!/(3'-(5"'$3,()&#7!>(:'#2"3!"-(12"=3,"'#"(&) ( “cosmetic neurology,” the off-label and non-prescription use of drugs to enhance performance rather than to treat an existing condition, has #374*$($*"(3$$"'$%&'(&) ($*"(5"-%3(3'-($*"(!#%"'$%+#(#&557'%$<(JE*3$$"2K""/(LMMN>O(:'(132$%#7,32/(P'&&$2&1%#!/Q(!532$(-274!(7!"-($&(3745"'$( cognitive performance and abilities, present a divisive issue for both !#%"'$%!$!(3'-($*"(17.,%#(!"#$&2(JF323*("$(3,>/(LMMNR(S3#%'"(T(F&2,%'%/(LMMUR( V2"",<("$(3,>/(LMMUR(F787<353/(LMMLR(E38%#/(LMMWR(X72'"2/(LMMLR(Y#E3."/( 2005.) Recent studies demonstrate an increased prevalence of nootropics &'(#&,,"4"(#3517!"!($&("'*3'#"(3#3-"5%#(1"2)&253'#"(JY#E3."/(LMMZR( B%,,"2/([WW\>O(?*%,"(&',<(N6]^(&) (DA(#&,,"4"(!$7-"'$!(32"(-%34'&!"-(0%$*( 3$$"'$%&'(-"+#%$(*<1"23#$%="(-%!&2-"2(JGB9BO(7!%'4(BAY(:;(#2%$"2%3/( 71($&(LZ^(&) (#&,,"4"(!$7-"'$!(&'(3(4%="'(#3517!(2"1&2$"-(*3=%'4(7!"-( !$%57,3'$!(5"3'$()&2(GB9B(%'($*"(12"=%&7!(<"32(J?"<3'-$/(LMM\R(Y#E3."/(LMMZR(X"$"2/(LMM\>O(A$344"2%'4(+472"!(2"432-%'4(3#3-"5%#(-&1%'4( has initiated a furious effort by scientists, ethicists, medical practitioners, and the government to discuss potential ethical implications of cognitive enhancements and future directions. For future policymakers to tackle this issue, this paper will lay a preliminary ethical framework for considering future nootropic regulation. The considerations discussed in this paper are not novel as they apply in many aspects to other pharmacological or non-pharmacological substances that could alter performance and leverage an unfair advantage between groups of individuals. However, these concerns coalesce in a novel way in regards to the use of nootropics because their effects can also alter the human mind, a consecrated part of the human existence. Four salient ethical concerns raised by the use of nootropics that are often addressed in regards to health care allo1

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cation will be discussed: 1) safety, 2) distributive justice, 3) coercion, and 4) personhood. G!($*"(+",-(!$3'-!/($*"(-274(5&!$(&)$"'(7!"-()&2('&'65"-%#3,( 1721&!"!(%!(5"$*<,1*"'%-3$"(JS%$3,%'O>(Y"$*<,1*"'%-3$"(%!(3(!$%57,3'$( used to treat ADHD in adults and children and has been shown to improve attention, concentration, spatial working memory, and execu$%="(1,3''%'4(JA&,3'$&/([WWUR(@32</(LMMLR(?"."2/(LMML>O(X*"("))"#$!(&) ( methylphenidates are thought to be modulated through the catechol35%'"(!<!$"5(JA&,3'$&/([WWU>O(Y&-3+'%,(J@2&=%4%,O/(3(-274(-"=",&1"-()&2( $*"($2"3$5"'$(&) ('32#&,"1!<(0%$*(3(!%5%,32(#,%'%#3,(12&+,"($&(5"$*<,1*"nidate, has also been shown to be effective in the treatment of ADHD JX3<,&2(T(S7!!&/(LMMM>O(B"!1%$"(#"2$3%'(!%5%,32%$%"!($&(5"$*<,1*"'%-3$"/( 5&-3+'%,(-&"!('&$(3#$($*2&74*($*"(#3$"#*&,35%'"(13$*03<, although $*"("H3#$(5"#*3'%!5(%!(7'8'&0'(JF"2232&/([WW\R([WW]>O(_$*"2(!$7-%"!( have shown that this drug also improves arousal, improves alertness, and %512&="!(!7!$3%'"-(3$$"'$%&'(%'(!,""1(-"12%="-(!7.K"#$!(J`3432-"/([WWZR( E3,-0",,/(LMMMR(B&--!("$(3,>/(LMMW>O(X*"(3)&2"5"'$%&'"-(%512&="5"'$!( were observed in individuals with ADHD, a demonstrated neurological #&'-%$%&'/(0*%#*(0&7,-(."'"+$()2&5(1*3253#"7$%#3,($2"3$5"'$($&(2"!$&2"( $*"(.23%'($&('&253,()7'#$%&'%'4>(:'(*"3,$*<(%'-%=%-73,!/(2"!7,$!(*3="(.""'( %'#&'#,7!%="(%'(2"432-!($&($*"(."'"+$!(&) (5"$*<,1*"'%-3$"(3'-(5&-3+'%,R( in general the results have demonstrated selective conditional improve5"'$!(JX72'"2/(LMMLR(G43</(LM[M>O(G,$*&74*($*"!"(-274!(-&('&$(%'#&'trovertibly enhance cognitive performance, they pose a unique ethical quandary that has never been addressed by physicians and scientists. That is, what should we, as a society, do in regards to cognitive enhancements? What is the purpose of medicine? This question lies at the heart of the issue of cognitive enhancements. Arguably, the answer could either be to improve the quality of ,%)"()&2(13$%"'$!(&2($&($2"3$(-%!"3!"!>(_'"(=%"0(3247"!($*3$($*"(1721&!"(&) ( medicine is to improve the quality of life for the patients by curing their ailments and returning them to a state where they subjectively felt better, and therein lays the problem. Chatterjee discusses the dissonance between the perspectives of medical practitioners and their patients on the %!!7"(&) (a73,%$<(&) (,%)"(JLMMN>O(?*%,"($*"()&#7!(&) (3,,&13$*%#(5"-%#%'"(*3!( been to treat and cure diseases, treatment of disease symptoms does not '"#"!!32<(%512&="($*"(a73,%$<(&) (,%)"()&2(13$%"'$!>(:$(#&7,-(."(!3%-($*3$()&2( 13$%"'$!(0%$*(%'#723.,"(-%!"3!"!/(%$(0&7,-(."(5&2"(."'"+#%3,($&(%512&="( 2

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their quality of life instead of targeting individual symptoms through the use of pharmaceuticals. For example, in Parkinsonâ&#x20AC;&#x2122;s disease, treatment using dopamine agonists can actually induce negative side effects such 3!('37!"3/(=&5%$%'4/(1!<#*&!%!/(3'-(-<!8%'"!%3(JA#*234/(LMMMR(E*317%!/( LMMZ>O(X*"(."'"+$!(43%'"-()2&5(3,,"=%3$%'4(@328%'!&'b!(!<51$&5!(%'($*%!( case could be overshadowed by the negative side effects of the medication, thus further decreasing the quality of life for the patient Assuming that the purpose of medicine is to improve quality of life for patients, we then reach yet another ethical quandary. Who is a patient? Should only those who are ill be allowed access to medicine or should all individuals be eligible for medical help. Further, should illness ."(-"+'"-(3!(3(5"'$3,/(.%&,&4%#3,/(."*3=%&23,(#&'-%$%&'(&2(!&5"(#&5.%'3$%&'(&) ($*&!"()3#$&2!c(:) (&'"(0"2"($&(!3<($*3$(5"-%#3,(!"2=%#"!(!*&7,-( be limited to the ill, then there would be no need for preventive care, !%'#"($*&!"(%'-%=%-73,!(32"('&$(<"$(%,,>(:'(,%4*$(&) ($*"()3#$($*3$(12"="'$%="( care is an integral part of medicine, one must assume that all individuals, regardless of current health status must qualify for medical care. Then, if improving the quality of life for a diseased individual means alleviating bothersome adverse symptoms, what would that mean for a healthy individual? Would that mean that transcending beyond the â&#x20AC;&#x153;normalâ&#x20AC;? human condition and enhancing baseline performance are inherent parts of medicine? While the use for pharmaceuticals for treatment of diseases is undisputedly supported by the general public, the use of pharmaceuticals )&2("'*3'#"5"'$!(%!(57#*(5&2"(#&'$2&="2!%3,(JE*3$$"2K""/(LMMNR(S3#%'"( T(F&2,%'%/(LMMU>O(@"2*31!(&'"(2"3!&'(0*<($*"(7!"(&) (#&4'%$%="("'*3'#"ments is so contentious is because it alters the status quo of the human condition. Historically, humans have been very resistant to change until a catalyst triggers an indisputable paradigmatic shift. Until then, scientists, ethicists, practitioners, and the general public are often divided between different camps of thought, each operating on separate paradigms. As discussed by Racine and Forlini, the different paradigms include cogni$%="("'*3'#"5"'$!(3!(3(."'"+#%3,(%'"=%$3.%,%$<(&) (*753'(-"=",&15"'$/( cognitive enhancements as abuse of prescription drugs, and cognitive "'*3'#"5"'$!(3!(3(,%)"!$<,"(#*&%#"(JLMMU>O(d="'(0%$*%'($*"(2"3,5(&) ( academia, there is no widely accepted paradigm. Greely et al. and other prominent academics strongly advocate the responsible use of cogni$%="("'*3'#"5"'$!/(-")"'-%'4(%$!(1&$"'$%3,(."'"+$!(7'-"2(12&1"2(2"47,3tion while practitioners like Chatterjee and philosophers like Fukuyama 3

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-%!342""(JV2"",<("$(3,>(LMMUR(F323*("$(3,>/(LMMNR(9322%!/(LMMWR(F787<353/( LMMLR(E*3$$"2K""/(LMMW>O(F787<353(53%'$3%'!(%'(*%!(.&&8(Our Post Human Future that â&#x20AC;&#x153;the original purpose of medicine is to heal the sick, not $72'(*"3,$*<(1"&1,"(%'$&(4&-!>(J1>LMU/(LMMLOQ(:'(&2-"2($&(5&="(#,&!"2($&( 3(7'%+"-(3'-/(5&2"(%51&2$3'$,</(%')&25"-(1&,%#<(-"#%!%&'(2"47,3$%'4($*"( use of cognitive enhancement, it is necessary to consider the following ethical concerns: safety, distributive justice, coercion, and personhood. Are the benefits worth the risk? X*"(+2!$("$*%#3,(#&'#"2'($*3$(&'"(!*&7,-(#&'!%-"2(%!($*"(!3)"$<(&) ( $*"(13$%"'$>(:'(12&$"#$%'4($*"(!3)"$<(&) ($*"(13$%"'$/(&'"(57!$(#&'!%-"2($*"( !3)"$<(12&+,"(&) ($*"(#&4'%$%="("'*3'#"5"'$(%'(a7"!$%&'>(?*"'(3(13$%"'$( is placed on a drug, the doctor and patient must carefully evaluate the .3,3'#"(."$0""'($*"(-"!%2"-(."'"+$!(3'-($*"(2%!8!>(@3$%"'$!(&)$"'(#*&&!"( $&($38"(-274!(0%$*(!"2%&7!(2%!8!(."#37!"($*"(1&$"'$%3,(."'"+$!(32"(57#*( 42"3$"2R(3'("H351,"(0&7,-(."(#*"5&$*"231"7$%#(34"'$!>(_) (#&72!"/($*"( ."'"+$!(&) (-274!(32"(*"3=%,<(3))"#$"-(.<($*"(-%!"3!"(#72%'4()3#$&2>(A%'#"( cognitive enhancements in healthy individuals are not meant to cure any 132$%#7,32(-%!"3!"!/($*"($&,"23'#"()&2(2%!8!(%!(!"="2",<(,&0"2"-(JF323*("$( 3,>/(LMMNR(E38%#/(LMMWR(C7$#*"2/(LMMe>O(X*7!/('&&$2&1%#(34"'$!(!*&7,-( be subjected to the same, if not more stringent considerations as other -274!(%'(2"432-!($&(!3)"$<(JE*3$$"2K""/(LMM\>O(V2"",<("$(3,>(3'-(#&,,"347"!( propose accelerating the research process to discover the mechanism of action for various enhancements, to allow patients and doctors to make 3()7,,<(%')&25"-(-"#%!%&'($*3$(0&7,-(53H%5%f"(."'"+$(3'-(5%'%5%f"( *325(JV2"",<("$(3,>/(LMMU>O(E"2$3%'(#,%'%#%3'!(53<()"",($*3$(3'<(1&$"'tial risk to a healthy individual should not be tolerated, thus, cognitive "'*3'#"5"'$!(!*&7,-('&$(."(53-"(3=3%,3.,"(JE*3$$"2K""/(LMMNR(LMM\>O( However, these clinicians would be remiss in denying patient autonomy. ?*"'()7,,<(%')&25"-(&) ($*"(1&$"'$%3,(2%!8!(3'-(."'"+$!/(3(13$%"'$(*3!( "="2<(2%4*$($&(-"#%-"()&2(*%5!",)g*"2!",) ($*"(#&72!"(&) ($2"3$5"'$(JI7%,,( T(C2&-</([WW\>O(X*7!/($*"(2&,"(&) ($*"(#,%'%#%3'!(3'-(,"4%!,3$&2(0&7,-(."( 3(+'"(.3,3'#"(."$0""'(#&'!%-"23$%&'!()&2(13$%"'$(!3)"$<(3'-(53%'$3%'%'4( patient autonomy. Although the individual responsibilities of clinicians and legislators are different, conversations must be facilitated between the two groups in order to reach an optimal solution to the regulation &) (#&4'%$%="("'*3'#"5"'$!>(:) (#&4'%$%="("'*3'#"5"'$!(1&!"(7'-%!17$"-( and unavoidable threats to patient safety, the clinicians and legislators are within their rights, and are duty bound, to protect the patients from such 4

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substances. However, if the side effects are not detrimental to society as a whole and the enhancement would not cause unavoidable harm, then the decision for use should be that of the patientâ&#x20AC;&#x2122;s. What constitutes societal detriments would be determined by a collaboration between physicians and legislators, taking into consideration effects on health and individuals. Most importantly, as suggested by Greely et al. and colleagues, it %!($*"(2&,"(&) ($*"(!#%"'$%!$!($&("'!72"($*3$(2"!7,$!(&) ($*"%2(!#%"'$%+#(!$7-%"!( 32"(#&22"#$,<(1&2$23<"-(3'-("51,&<"-($&(3%-("-7#3$"-(-"#%!%&'!(JLMMU>O Would enhancements provide equal benefits to all? X*"(!"#&'-("$*%#3,(#&'#"2'(%!(-%!$2%.7$%="(K7!$%#">(:) (#&4'%$%="( enhancements were made available, would the availability of the drugs naturally prove advantageous to some while disadvantaging others? As with all free-market goods, cognitive enhancements would conceivably ."'"+$($*"(0"3,$*<(5&2"($*3'($*"("#&'&5%#3,,<(-%!3-=3'$34"->(Y&2"over, if cognitive enhancements augment cognitive ability beyond normal capacity, then the wealthy would have greater means and opportunity to obtain these cognitive enhancements, monopolizing the market on the '"0(#&4'%$%="('&25(JC7$#*"2/(LMMe>O(:'(2"432-!($&(7!"(&) ('&&$2&1%#!(%'( an academic setting, one could contend that nootropic use would create 3'(7'"="'(1,3<%'4(+",-/(3,,&0%'4($*&!"(0*&(#3'(3))&2-($*"("'*3'#"5"'$!( to outperform those who cannot. This would create a cyclical effect on education and employment disadvantaging those who do not have the means to reach the new norm in the end. However, to say that the availability of cognitive enhancements as free-market goods would generate 3('&=",(7'"="'(+",-(0&7,-(."('3h=">(B%!132%$%"!(3,2"3-<("H%!$(%'($"25!(&) ( biological and environmental incongruities between the socioeconomic #,3!!"!(JF323*/(LMML>O(F323*("$(3,>(3247"($*3$("-7#3$%&'(%!(3'(7'"a73,,<(-%!tributed cognitive enhancer that is tolerated by society, thus, prohibiting the use of cognitive enhancements on the grounds of unequal distribu$%&'(0&7,-(."(!71"2i7&7!(3'-(*<1&#2%$%#3,(JLMMLR(LMMNR(C7$#*"2/(LMMe>O( :) (3'<$*%'4/(%$(53<(."("3!%"2($&("'!72"($*"("a73,(-%!$2%.7$%&'(&) (#&4'%$%="( enhancement than it is to ensure equal education opportunities due to the fact that there are many factors contributing to education inequalities J"4>(,&#3$%&'/("#&'&5%#(0"3,$*/("$#jO(JC7$#*"2/(LMMe>O Would cognitive enhancers indirectly cause peer pressure for use? The third ethical concern is coercion. There are two forces of coercion: implicit desire to maintain the status quo, and explicit demands to 5

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)7,+,,(3'-("H#""-(12"6-"$"25%'"-("H1"#$3$%&'!(JE*3$$"2K""/(LMMN>O(Y3'<( fear that if cognitive enhancements were made readily available, then those who chose not use them would be implicitly and explicitly coerced by their peers in order to remain competitive. The extreme case would be regulations demanding use of cognitive enhancements for those working in the public sector to meet customer demands. An example cited .<(E*3$$"2K""(%!(.3!"-(&'(12"=%&7!(+'-%'4!(&) (%512&="-(1"2)&253'#"!( &) (1%,&$!(%'("5"24"'#<(!%$73$%&'(0*%,"($38%'4(-&'"f"1%,(JE*3$$"2K""/( LMMNR(k"!3=34"/(LMM[>O(?&7,-($*"(#7!$&5"2!(&) ($*"(3%2,%'"!(."(K7!$%+"-( in demanding that all pilots be taking donezepil? Would this be ethical? Would customers even need to make such demands since pilots may then feel pressured to take donezepil to make increase their attractiveness in the job market? As before, it would be ignorant to think that such forces of coercion do not exist in todayâ&#x20AC;&#x2122;s society. Studies have shown that the incidence of non-medical prescription stimulant use is higher among US college students with lower grade point averages, suggesting that these students already feel pressured to use stimulants to keep up with their 1""2!(%'($*"(#&51"$%$%="(3#3-"5%#("'=%2&'5"'$(JY#E3."/(LMMZ>O(E38%#( posits that in order for a student to feel implicitly coerced to use cognitive enhancements, two criteria must be met: 1) students who use cognitive enhancements would have a distinct advantage over those who do '&$/(3'-(LO(3(!%4'%+#3'$,<(*%4*(1&2$%&'(&) ($*"(!$7-"'$(1&17,3$%&'(57!$(."( 7!%'4(#&4'%$%="("'*3'#"5"'$!(JE38%#/(LMMW>O(?%$*&7$("H$"'!%="("51%2%#3,( -3$3/(%$(0&7,-(."(-%)+#7,$($&(3!!"!!($*"(#&"2#%="()&2#"!(3$(1,3<(%'($&-3<b!( society, especially in academia where cognitive enhancement use would ."(5&!$(12"=3,"'$>(:$(0&7,-(."(-%)+#7,$($&(538"(3(#,"32(1&,%#<(-"#%!%&'( based on this factor alone. How will the userâ&#x20AC;&#x2122;s perception of self change? X*"(+'3,("$*%#3,(#&'!%-"23$%&'(%!(1"2!&'*&&-/(&2(&'"b!(1"2#"1$%&'( of oneself. Understandably, critics are wary of psychoactive substances and their potential impact on the perception of self. Further, there is an argument that an integral part of humanity, or rather our notion of personhood, would be at risk if one were to use cognitive enhancements JC7$#*"2/(LMMeR(E*3$$"2K""/(LMMNR(?&,1"/(LMML>O(C<(1"2!&'*&&-/($*"!"( critics are referring to the quintessential essence of human suffering; $*"(="2<(3#$(&) (!$2%=%'4($&032-(3(4&3,(-"+'"!($*3$(%'-%=%-73,b!(%-"'$%$<(3!( perceived by others and their own self-identity. Cognitive enhancements would provide shortcuts to individuals, bypassing some of lifeâ&#x20AC;&#x2122;s neces6

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sary and formative struggles, thus altering an individual’s personhood and -"+'%$%&'(&) (!",) (J?&,1"/(LMML>O(?&,1"(2")"2!($&(!$2744,"!(!7#*(3!($*"( ,3$"('%4*$(1"2!"="2%'4($&(,"32'(3('"0(!7.K"#$(&2(!8%,,(JLMML>O(_) (#&72!"/( the opposing viewpoints could assert that today’s society, equipped with 1"21"$73,,<(#*3'4%'4($"#*'&,&4<(1"25%$!(%'-%=%-73,!($&(2"-"+'"/(2"%'force, or even rebuild their identities, and the use of cognitive enhancements would simply be integrated into those processes. Are we ready? This paper discussed several key ethical dilemmas involved in the issue of cognitive enhancements. Although current drugs used with the %'$"'$%&'(&) ("'*3'#%'4(#&4'%$%="(3.%,%$%"!(*3="(!*&0'(,%$$,"($&('&(!%4'%+cant improvements in healthy individuals, it is still important to begin the investigative process by assessing the validity of existing and novel ethical stances. Further, in order to reach a fully informed decision that is in the best interest of society, there must be collaboration and communication between scientists, practitioners, ethicists, legislators, and the general 17.,%#>(F%2!$,</(!#%"'$%!$!(3'-(1*<!%#%3'!(57!$(-"$"25%'"($*"(235%+#3$%&'( of prolonged use of cognitive enhancements on our brains, delineating $*"(5&21*&,&4%#3,/(."*3=%&23,/(3'-(#&4'%$%="("))"#$!>(F2&5($*"!"(+'-%'4!/( it would be possible to assess the degree of impact these enhancements will have on an individual and how that impact will translate to society as a whole. Legislators and ethicists must then interpret these results and determine necessary regulations in terms of manufacturing and distribu$%&'>(:-"3,,</($*%!(12&#"!!(0&7,-(&##72(+2!$(3$($*"('3$%&'3,(,"=",($*"'(&'( a global scale to ensure that countries would not capitalize upon this opportunity to coin a new type of warfare, “intelligence warfare.” While we are not yet at a stage where a drug incontrovertibly enhances cognitive abilities beyond normal capacity, it is necessary that we set up the framework to best accommodate future situations. With developments not just in pharmaceuticals but technological advancements, it is plausible that these considerations will be employed sooner rather than later.

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Works Cited G43</(l>/(k"#*%35/(d>/(E325",/(m>/(T(`"=8&=%$f/(k>(JLM[MO>(l&'6!1"#%+#( "))"#$!(&) (5"$*<,1*"'%-3$"(JS%$3,%'O(&'(#&4'%$%="(3.%,%$<(3'-( decision-making of ADHD and healthy adults. Psychopharmacology, 210JNO/(Z[[6Z[W>(-&%n[M>[MM]g!MML[e6M[M6[UZe6N(( C%#*&'!8%/(S>(J[W]ZO>(oG'3,<!%!(&) (#,%'%#3,(1*"'&5"'3(3'-(#*3'4"!(%'( physico-chemical properties of the blood in mentally ill children]. Folia Medica Cracoviensia, 17JeO/(e[e6eLU>(( C7$#*"2/(p>(JLMMeO>(E&4'%$%="("'*3'#"5"'$(23%!"!("$*%#3,(#&'#"2'!>(The Lancet, 362JWe]UO/([eL6[ee>(-&%n[M>[M[\gAM[NM6\]e\JMeO[eUW]6N(( E38%#/(;>(JLMMWO>(A532$(-274!()&2(#&4'%$%="("'*3'#"5"'$n("$*%#3,(3'-( pragmatic considerations in the era of cosmetic neurology. Journal of Medical Ethics, 35J[MO/(\[[6\[Z>(-&%n[M>[[e\gK5">LMMW>MeMUUL(( E3,-0",,/(p>(G>/(E3,-0",,/(p>(`>/(A5<$*"/(l>(q>/(T(93,,/(q>(q>(JLMMMO>(G( -&7.,"6.,%'-/(1,3#".&6#&'$2&,,"-(%'="!$%43$%&'(&) ($*"(")+#3#<( &) (5&-3+'%,()&2(!7!$3%'%'4($*"(3,"2$'"!!(3'-(1"2)&253'#"(&) ( aviators: a helicopter simulator study. Psychopharmacology, 150JeO/( L]L6LUL>(( E*317%!/(A>/(_7#*#*3'"/(`>/(Y"$f/(_>/(V"2.37-/(`>/(T(B72%)/(F>(JLMMZO>( :513#$(&) ($*"(5&$&2(#&51,%#3$%&'!(&) (@328%'!&'b!(-%!"3!"(&'($*"( quality of life. Movement Disorders, 20JLO/(LLN6LeM>(-&%n[M>[MMLg 5-!>LML]W(( E*3$$"2K""/(G>(JLMM\O>(X*"(12&5%!"(3'-(12"-%#35"'$(&) (#&!5"$%#('"7rology. Journal of Medical Ethics, 32JLO/([[M6[[e>(-&%n[M>[[e\g K5">LMMZ>M[eZWW(( E*3$$"2K""/(G>(JLMMWO>(:!(%$(3##"1$3.,"()&2(1"&1,"($&($38"(5"$*<,1*"'%-3$"( to enhance performance? No. BMJ, 338JK7'[U(LO/(.[WZ\6.[WZ\>( -&%n[M>[[e\g.5K>.[WZ\(( E*3$$"2K""/(G>(JLMMNO>(E&!5"$%#('"72&,&4<n($*"(#&'$2&="2!<(&="2("'*3'#ing movement, mentation, and mood. Neurology, 63J\O/(W\U6W]N>(( B%,,"2/(`>(9>(J[WW\O>(X*"(27'(&'(S%$3,%'>(G$$"'$%&'(-"+#%$(-%!&2-"2(3'-( !$%57,3'$($2"3$5"'$(%'($*"([WWM!>(The Hastings Center Report, 26JLO/( [L6[U>(( B&--!/(E>/(Yr,,"2/(D>/(T(Y3',</(X>(JLMMWO>(d))"#$!(&) (@!<#*&!$%57,3'$!( on Alertness and Spatial Bias in Healthy Participants. Journal of Cognitive Neuroscience, 21JeO/(ZLW6Ze]>(-&%n[M>[[\LgK&#'>LMMW>L[MN\(( F323*/(Y>(p>(JLMMLO>(d5"24%'4("$*%#3,(%!!7"!(%'('"72&!#%"'#">(Nature Neuroscience, 5J[[O/([[Le6[[LW>(-&%n[M>[MeUg''[[ML6[[Le(( 8

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F323*/(Y>(p>/(:,,"!/(p>/(E&&86B""43'/(S>/(V32-'"2/(9>/(q3'-",/(d>/(q%'4/( @>/(@32"'!/(d>/("$(3,>(JLMMNO>(A#%"'#"(3'-(A&#%"$<n(l"72&#&4'%$%="( enhancement: what can we do and what should we do? Nature Reviews Neuroscience, 5JZO/(NL[6NLZ>(-&%n[M>[MeUg'2'[eWM(( F"2232&/(`>/(G'$&'",,%/(X>/(_#&''&2/(?>/(X3'43'",,%/(A>/(S35."2$/(F>/(T( F7H"/(q>(J[WW]O>(Y&-3+'%,n(G'(3'$%'32#&,"1$%#(-274(0%$*(3(-%))"2"'$('"72&#*"5%#3,(12&+,"($&(-6351*"$35%'"(3'-(-&135%'"(71take blockers. Biological Psychiatry, 42J[LO/([[U[6[[Ue>(-&%n[M>[M[\g AMMM\6eLLeJW]OMMeZe6e(( F"2232&/(`>/(X3'43'",,%/(A>/(_#&''&2/(?>/(G'$&'",,%/(X>/(S35."2$/(F>/(T( F7H"/(q>(J[WW\O>(X*"(=%4%,3'#"(12&5&$%'4(-274(5&-3+'%,(-"creases GABA release in the medial preoptic area and in the posterior hypothalamus of the awake rat: possible involvement of the serotonergic 5-HT receptor. Neuroscience Letters, 220J[O/( Z6U>(-&%n[M>[M[\gAMeMN6eWNMJW\O[eL[L6L(( F787<353/(F>(JLMMeO>(Our posthuman future : consequences of the biotechnology revolution(J[!$("->O>(l"0(k&28n(@%#3-&2>(( Greely, H., Sahakian, B., Harris, J., Kessler, R. C., Gazzaniga, M., Camp.",,/(@>/(T(F323*/(Y>(p>(JLMMUO>(X&032-!(2"!1&'!%.,"(7!"(&) (#&4'%tive-enhancing drugs by the healthy. Nature, 456J]LLeO/(]ML6]MZ>( -&%n[M>[MeUgNZ\]ML3(( 9322%!/(p>(JLMMWO>(:!(%$(3##"1$3.,"()&2(1"&1,"($&($38"(5"$*<,1*"'%-3$"($&( enhance performance? Yes. BMJ, 338JK7'[U(LO/(.[WZZ6.[WZZ>( -&%n[M>[[e\g.5K>.[WZZ(( `3432-"/(B>/(C3$"K3$/(B>/(;3'(C""2!/(@>/(A323+3'/(B>/(T(@23-",,3/(A>(J[WWZO>( :'$"2"!$(&) (5&-3+'%,/(3('"0(1!<#*&!$%57,3'$/(-72%'4(3(!%H$<6*&72( sleep deprivation experiment. Fundamental & Clinical Pharmacology, 9JeO/(L][6L]W>(( Y#E3."/(A>(d>/(q'%4*$/(p>(S>/(X"$"2/(E>(p>/(T(?"#*!,"2/(9>(JLMMZO>(l&'6 medical use of prescription stimulants among US college students: prevalence and correlates from a national survey. Addiction, 100J[O/(W\6[M\>(-&%n[M>[[[[gK>[e\M6MNNe>LMMZ>MMWNN>H(( @32</(S>/(`"0%!/(A>/(Y3$7!#*83/(@>/(S7-f%'!8%</(@>/(A3+/(Y>/(T(`%1153'/( A>(J'>->O>(G$$"'$%&'(-"+#%$(-%!&2-"2(%'(3-7,$!>(Annals of Clinical Psychiatry, 14, 105-111. I7%,,/(X>(d>/(T(C2&-</(9>(J[WW\O>(@*<!%#%3'(2"#&55"'-3$%&'!(3'-(13$%"'$( 37$&'&5<n(+'-%'4(3(.3,3'#"(."$0""'(1*<!%#%3'(1&0"2(3'-(13$%"'$( choice. Annals of Internal Medicine, 125JWO/(]\e6]\W>(( 9

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S3#%'"/(d>/(T(F&2,%'%/(E>(JLMMUO>(E&4'%$%="(d'*3'#"5"'$/(`%)"!$<,"( Choice or Misuse of Prescription Drugs? Neuroethics, 3J[O/([6N>( -&%n[M>[MM]g![L[ZL6MMU6WMLe6](( A#*234/(G>/(p3*3'!*3*%/(Y>/(T(I7%''/(l>(JLMMMO>(9&0(-&"!(@328%'sonâ&#x20AC;&#x2122;s disease affect quality of life? A comparison with quality of life in the general population. Movement Disorders, 15J\O/( [[[L6[[[U>(-&%n[M>[MMLg[Ze[6ULZ]JLMMM[[O[Zn\s[[[LnnG:B6 YBA[MMUte>M>E_RL6G(( A&,3'$&/(Y>(J[WWUO>(l"72&1!<#*&1*3253#&,&4%#3,(5"#*3'%!5!(&) ( !$%57,3'$(-274(3#$%&'(%'(3$$"'$%&'6-"+#%$(*<1"23#$%=%$<(-%!&2-"2n(3( review and integration. Behavioural Brain Research, 94J[O/([L]6[ZL>( -&%n[M>[M[\gAM[\\6NeLUJW]OMM[]Z6](( X3<,&2/(F>(C>/(T(S7!!&/(p>(JLMMMO>(d)+#3#<(&) (5&-3+'%,(#&5132"-($&(-"H$2&351*"$35%'"()&2($*"($2"3$5"'$(&) (3$$"'$%&'(-"+#%$(*<1"23#$%=ity disorder in adults. Journal of Child and Adolescent Psychopharmacology, 10JNO/(e[[6eLM>(( X"$"2/(E>(p>/(Y#E3."/(A>(d>/(`3V23'4"/(q>/(E23')&2-/(p>(G>/(T(C&<-/(E>( p>(JLMM\O>(:,,%#%$(D!"(&) (A1"#%+#(@2"!#2%1$%&'(A$%57,3'$!(G5&'4( College Students: Prevalence, Motives, and Routes of Administration. Pharmacotherapy, 26J[MO/([ZM[6[Z[M>(-&%n[M>[ZWLg 1*#&>L\>[M>[ZM[(( X72'"2/(B>/(S&..%'!/(X>/(E,328/(`>/(G2&'/(G>/(B&0!&'/(p>/(T(A3*38%3'/(C>( J'>->O>(E&4'%$%="(d'*3'#%'4(d))"#$!(&) (5&-3+'%,(%'(9"3,$*<(;&,unteers. Psychopharmacology, 165JeO/(L\M6L\W>(( ?"."2/(@>/(T(`7$!#*4/(p>(JLMMLO>(Y"$*<,1*"'%-3$"($2"3$5"'$>(Pediatrics Neurology, 26/(L\L6L\\>(( ?"<3'-$/(`>(`>(JLMM\O>(GB9B(%'(E&,,"4"(A$7-"'$!>(Journal of Attention Disorders, 10J[O/(W6[W>(-&%n[M>[[]]g[MU]MZN]MZLU\M\[(( ?&,1"/(@>(JLMMLO>(X2"3$5"'$/("'*3'#"5"'$/(3'-($*"("$*%#!(&) ('"72&$*"23peutics. Brain and Cognition, 50JeO/(eU]6eWZ>(-&%n[M>[M[\gAML]U6 L\L\JMLOMMZeN6[(( k"!3=34"/(p>(G>/(Y75"'$*3,"2/(Y>(A>/(X3<,&2/(p>(`>/(F2%"-53'/(`>/(_b9323/( S>/(A*"%8*/(p>/(X%'8,"'."24/(p>/("$(3,>(JLMMLO>(B&'"1"f%,(3'-(i%4*$( simulator performance: effects on retention of complex skills. Neurology, 59J[O/([Le6[LZ>((

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Works Referenced B"K&'4*/(S>/(C&,$/(:>/(A#*"25"2/(Y>/(T(_,%=%"2/(C>(JLMMUO>(C&$&H()&2($*"( brain: enhancement of cognition, mood and pro-social behavior and blunting of unwanted memories. Neuroscience & Biobehavioral Reviews, 32JNO/(]\M6]]\>(-&%n[M>[M[\gK>'"7.%&2"=>LMM]>[L>MM[(( `3''%/(E>/(`"'f8"'/(A>/(@3!#3,"/(G>/(B",="##*%&/(:>/(S3##*%/(Y>/(@%!$&%3/( F>/(T(V&=&'%/(A>(JLMMUO>(E&4'%$%&'("'*3'#"2!(."$0""'($2"3$%'4( and doping the mind. Pharmacological Research, 57JeO/([W\6L[e>( -&%n[M>[M[\gK>1*2!>LMMU>ML>MMN(( S&!"/(A>(@>(S>(JLMMLO>(uA532$(-274!bn(-&($*"<(0&28c(G2"($*"<("$*%#3,c( Will they be legal? Nature Reviews. Neuroscience, 3J[LO/(W]Z6W]W>( -&%n[M>[MeUg'2'WUN(( A03'!&'/(p>(Y>/(T(;&,8&0/(l>(B>(JLMMWO>(Psychopharmacology: concepts and opinions about the use of stimulant medications. Journal of Child Psychology and Psychiatry, 50J[6LO/([UM6[We>(-&%n[M>[[[[g K>[N\W6]\[M>LMMU>MLM\L>H(( ;3!$34/(C>(JLMMNO>(@&%!"-($&(E*3,,"'4"(l""-()&2(A,""1/(P?38")7,'"!!( Enhancerâ&#x20AC;? Rouses Concerns. JAMA: The Journal of the American Medical Association, 291JLO/([\]6[]M>(-&%n[M>[MM[gK353>LW[>L>[\]((

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Ethics Behind Health Insurance: Is Reliance on Employer-Based Insurance Just? Ban Wang â&#x20AC;&#x2122;12 John Hopkins University

51,&<"26.3!"-(%'!723'#"(&2%4%'3$"-(%'(1&!$6?&2,-(?32(::(G5"2%#3( after the defeat of the national health insurance proposals during $*"([WeM!($&([WNM!(v(3($%5"(0*"'("51,&<"2!(-"=",&1"-(%'$"2"!$!(%'( offering group health plans on a large scale.1 The primary incentive for employers to offer health insurance to employees was tax breaks through federal subsidies, while the main incentive for employees to take the offer was guaranteed healthcare coverage. What was initially constructed as 3'(3$$23#$3'$()&2("51,&<""!/(*&0"="2/(*3!(."#&5"(3(1&$"'$%3,(+'3'#%3,( burden for both the employers and employees; the rising cost of healthcare, increased working population, and other various socio-economic factors are now causing the disintegration of the system. Whether this disintegration is slow or fast is open to debate, but an interesting ethical a7"!$%&'(32%!"!()2&5(&72(#722"'$(!%$73$%&'n(:!(%$(K7!$()&2(3(#&7'$2<($&(2",<( on employer-based health insurance as the main method of obtaining healthcare coverage for its average citizens?2 When we look at our current system of employer-based health insurance, we can clearly see that it presents numerous social problems v(($*"()3#$($*3$(!"3!&'3,(0&28"2!(32"('&$(%'#,7-"-(%'(2"#"%=%'4("51,&<"2( health insurance and that some employers donâ&#x20AC;&#x2122;t even offer healthcare as 132$(&) ($*"("51,&<5"'$(13#834"/($&('35"(3()"0>(:(0%,,('&$(4&(%'$&(42"3$( -"$3%,(&'($*"("H$"'$(&) ($*"(!&#%3,(12&.,"5!/(.7$(:(0&7,-(,%8"($&($&7#*( upon one result of these problems. The existence of inequality in the system of employer-based health insurance is causing the uninsured to stay uninsured. Since most of the uninsured are low income individuals who are not eligible for health assistance programs such as Medicaid, the lack of healthcare coverage, even for a short amount of time, can result in decreased access to healthcare in the future. This is a continuous cycle where once one becomes uninsured, any bad health will cause one to lose employment opportunities and thus, stay uninsured. As Ronald Dworkin [( 2

l3'#<(p"#8"2/(E3'(3'(d51,&<"26.3!"-(9"3,$*(:'!723'#"(A<!$"5(C"(p7!$c Average citizens in this case would generally be people who would not qualify for health assistance programs

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claims, “Most people also agree that health care is unjustly distributed in America. Forty million Americans have grossly inadequate medical coverage or none at all, and many who now have adequate insurance will lose it, because they will lose their jobs or develop a disease or condition that make them uninsurable.”3 Because the uninsured are less likely to have regular access to healthcare and will be more likely to experience a decline in their overall health, they get trapped in this vicious cycle.4 While it may be logical to claim that the uninsured group consists mostly of illegal immigrants, who cannot obtain regular jobs with healthcare ."'"+$!/(0"(+'-($*3$($*%!(%!('&$($*"(#3!"/(3!(P$*"(53K&2%$<(&) ($*"(7'%'!72"-(JU[^O(32"('3$%="(&2('3$723,%f"-(D>A>(#%$%f"'!>Q5 Thus, this is a clear indication that our current system of relying on employer-based health insurance is inadequate. The big question, then, is the following: does this inadequacy suggest that the system is unjust? To answer this question, we need to examine the ethical prob,"5!(."*%'-($*"("51,&<"26.3!"-(*"3,$*(%'!723'#"(!<!$"5>(_'"(&) ($*"( 53%'("$*%#3,(12&.,"5!/(*%4*,%4*$"-(.<(B0&28%'(%'(A&="2"%4'(;%2$7"/(%!( that our current system is irrational.\ This irrationality is due to the fact that “the system makes choices for people that they would not make for themselves,” which takes away individual autonomy or right to choose one’s own path. This is a clear ethical problem in itself and essentially means that by relying on employer-based health insurance to cover many citizens, we are essentially coerced into making the choice to buy health insurance when some of us might not rationally make that choice if we were given other alternatives. This irrationality is engendered by the failure of our current employer-based system to provide us with the care we want at the prices we are willing and able to pay. This system also restricts our opportunities such that employees can become trapped into $*"%2(#722"'$(1&!%$%&'!(-7"($&($*"('""-()&2(*"3,$*#32"(."'"+$!>] While some may argue that people have the choice to acquire private health insurance, our current insurance market makes private insurance premiums very expensive. According to the Kaiser Family Foundation report &'(9"3,$*(S"!"32#*(T(d-7#3$%&'3,(X27!$/($*"(3="234"(#&!$(&) (*"3,$*(#32"( 12"5%75!()&2(3()35%,<(%'(LMMW(%!(w[e/e]Z>(:) (3()35%,<(-&"!('&$(a73,%)<()&2( e( 4 Z( \( ](

@4>(eM]/(A&="2"%4'(;%2$7" Kaiser Family Foundation: The Uninsured: A Primer :.%-> @4>(e[[>(A&="2"%4'(;%2$7" l3'#<(p"#8"2/(E3'(3'(d51,&<"26.3!"-(9"3,$*(:'!723'#"(A<!$"5(C"(p7!$c

The Princeton Journal of Bioethics

Medicare or cannot join an employer-based insurance program, this cost would have to be paid out-of-pocket. Thus, many people simply do not *3="($*"(+'3'#%3,(5"3'!($&(12&#72"(12%=3$"(*"3,$*(%'!723'#"("="'($*&74*( they have the option to. Another important ethical issue concerns the unjust distribution of jobs that “spoil justice in the distribution of health insurance.” Nancy Jecker, Professor of Medical Ethics at the University of Washington School of Medicine, Department of Bioethics and Humanities, argues that because the distribution of jobs determines the distribution of health insurance for most citizens, an unjust system of job distribution will result in an unjust system of health insurance.U The central example $*3$(p"#8"2(4%="!(%!(4"'-"2(%'"a73,%$%"!(%'("51,&<5"'$R(!1"#%+#(!"#$&2!(&) ( jobs can still be very much gender-structured. This gender inequity, while slowly eroding, is still especially prevalent in professions such as law and business. According to Jecker, the result is that “women health care access is reduced because women tend to work in lower-paying and lower!$3$7!(K&.!($*3$(&))"2()"0"2(."'"+$!/(3'-($*"<(32"(5&2"(,%8",<($&(0&28(&'( a part-time, part-year basis,” thus contributing to their lack of insurance coverage.W A counterargument to Jecker’s point could be that since most women are married and could potentially be put under their spouses’ healthcare plans, this inequality should be rather slim. While a valid point, this counterargument does not factor in unmarried females or female -%=&2#""!($*3$(3##&7'$()&2(3(!%4'%+#3'$(1&2$%&'(&) ($*%!(%'"a73,%$<>( G(+'3,("$*%#3,(12&.,"5(%!(0*3$(:(#3,,($*"(P%'i"H%.%,%$<Q(&) ("51,&<"26.3!"-(*"3,$*(%'!723'#">(X*%!(P%'i"H%.%,%$<Q(32%!"!()2&5($*"(%'3.%,%$<( of employer-based health insurance to adequately cover employees at 2%!8<(K&.!>(X*%!(P%'i"H%.%,%$<Q(%!(3'("$*%#3,(12&.,"5(."#37!"(%$(*3!($*"( potential to limit an individual’s quality of life. During periods of employment, the employee may become exposed to diseases or accidents, consequently impacting individual wellbeing. Thus it makes logical sense that in the working environment, employees should be covered in case !&5"$*%'4(*311"'!($&($*"5(&'($*"(K&.>(9&0"="2/($*%!(P%'i"H%.%,%$<Q( raises the question: to what extent should employers provide insurance? d51,&<""!(%'(-3'4"2&7!(+",-!/(!7#*(3!(5%'%'4(3'-(#&'!$27#$%&'/(32"( &))"2"-(&',<(!$3'-32-(v(3'-(&)$"'(%'3-"a73$"(v(*"3,$*#32"(#&="234"( .<($*"%2("51,&<"2!>(:'3-"a73$"(&2(%'i"H%.,"(*"3,$*#32"(#&="234"($*7!(#3'( U( W(

:'($*%!(#3!"/(%$(%!("51,&<"26.3!"-(*"3,$*(%'!723'#">( @4>(\\Z>(E3'(3'(d51,&<"26.3!"-(9"3,$*(:'!723'#"(A<!$"5(C"(p7!$c

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limit one’s quality of life, making it an ethical issue.10 While private insurance for these individuals could be an alternative, it would be highly impractical since it will likely be unaffordable for most middle class workers under our current system of private insurance. So then we must ask the )&,,&0%'4n(%!(%$(K7!$%+3.,"()&2(.7!%'"!!"!($&(#*&&!"(53%'$3%'%'4(3(,"=",(&) ( +'3'#%3,(12&+$3.%,%$<(.<(&',<(&))"2%'4(!$3'-32-(*"3,$*(%'!723'#"(&="2(12&viding more adequate health insurance for their employees that will be more expensive to maintain? Most employees would answer “no.” However, the businesses themselves are not necessarily at fault for this injus$%#"/(3!($*"(7,$%53$"(4&3,(&) (3'<(.7!%'"!!(%!($&(53%'$3%'(+'3'#%3,(12&+$ability, and certain cuts must be made to ensure stability even if it means +2%'4("51,&<""!(&2(#7$$%'4(."'"+$!(!7#*(3!(*"3,$*#32"(#&="234">(X*"(2"3,( 12&.,"5(,%"!(%'(*&0($*"("51,&<"26.3!"-(*"3,$*(%'!723'#"(%!(!"$(71>(:$!( P%'i"H%.%,%$<Q(&',<(3,,&0!()&2(3-"a73$"(#&="234"(7'-"2('&253,(0&28%'4( #&'-%$%&'!(3'-()&2(!$3'-32-("51,&<5"'$(!7#*(3!(&)+#"(K&.!(0*"2"(K&.6 related risks are relatively low when compared to high-risk jobs such as mining or construction. As Nancy Jecker puts it, “the current system of employer-based health insurance arose through historical events and accidents, rather than through a deliberate and morally thoughtful process.”11 Thus, a hastily created system like this cannot adequately adapt to the needs of different employees and work environments. This is not to say that all businesses should be required to offer health insurance; however, $*"("H$"'$(&) (*"3,$*(%'!723'#"(&))"2"-(!*&7,-(&.=%&7!,<('&$(."(%'i"H%.,">( Since we’ve looked at the ethical problems presented above, it is important for us to now consider the advantages and disadvantages of alternatives that could potentially cut back our reliance on employerbased health insurance.12 By closely examining these alternatives, we can not only determine which strategy is most ethical, but also potentially incorporate positive aspects from each of these options to create a more complete, and ultimately more just system of health insurance for the general population. X*"(+2!$(3,$"2'3$%="(%!($*"(_2"4&'(C3!%#(9"3,$*(A"2=%#"!(@2&4235( in which a system of rationing healthcare service is provided for recipi"'$!(%'(3'("H13'-"-(Y"-%#3%-(12&4235>((:$(%!(3(57,$%6$%"2"-(23$%&'%'4( 10

An example of this would be how standard insurance plans only cover a few sessions of physical therapy per year. For someone who works in construction and is often subject to hard labor, this is not enough to cover for the 4-5 physical therapy session that he or she need to keep up with the strenuousness of his or her job. [[(( @4>(\]M/(E3'(3'(d51,&<"26.3!"-(9"3,$*(:'!723'#"(A<!$"5(C"(p7!$c 12 As the main way to obtain healthcare coverage.

The Princeton Journal of Bioethics

system where recipients are given a pairing of illness and treatments ordered by importance that would be covered under the Medicaid program. B"$"25%'%'4(23'8!(&) ($*"(%,,'"!!g$2"3$5"'$(13%2(%!(.3!"-(&'(#&!$6."'"+$( ratios where the lower ratios are not included on the list of services 12&=%-"->(?*"'($*"(!<!$"5(03!(17$(%'$&("))"#$(%'([WUW/(%$(&))"2"-(7'%="2sal coverage for basic care and greatly expanded the healthcare access to 5&!$(_2"4&'%3'!R(*&0"="2/(!"="23,("$*%#3,(%!!7"!(32&!">(_'"(53%'(%!!7"( was how illness/treatment pairs were inappropriately ranked through the #&!$6."'"+$(23$%&(3'3,<!%!>(X*%!(%!(*&0($*"('&0(%')35&7!(311"'-"#$&5<( vs. tooth capping example arose, in which tooth cappings are ranked higher on the list of medical treatment and procedures than appendectomies. The reason why this happened can be directly attributed to the ,%'"32%$<(&) (3'<(#&!$6."'"+$(3'3,<!%!>(C"#37!"(*"3,$*#32"(12&=%!%&'!(=32<( =3!$,<(0%$*(-%))"2"'$(%'-%=%-73,('""-!/(#&!$6."'"+$(23'8%'4!(&) (%,,'"!!g treatment pairing are far too linear and algorithmic to accommodate for the complexities behind healthcare coverage and rationing. Due to the fact that the illness/treatment pairing list featured a #7$6&)) (,%'"(0*"2"(!"2=%#"!(0%$*(,&0"2(."'"+$!(0"2"("H#,7-"-/(%$(03!(3,!&( -%)+#7,$()&2(_2"4&'(,30(538"2!($&(-"$"25%'"(0*"2"($*3$(#7$6&)) (,%'"( !*&7,-(,%">(X*%!(.2&74*$(71(3'&$*"2(%51&2$3'$(%!!7"(0%$*($*"(_2"4&'( Basic Health Services Program, which Norman Daniels, Professor of Population Ethics in the Department of Global Health and Population of the Harvard School of Public Health, argues is that the program is unjust, because it actually hurt Medicaid recipients. According to Daniels, P:) ('&('"0(2"!&72#"!(32"(3--"-/($*"(1,3'(53<(538"(#722"'$(Y"-%#3%-( recipients worse off,â&#x20AC;? because the plan is a zero sum game with regards to resources.13 What this means is that because our healthcare provisions are greatly limited by scarce resources, any additions to the list of illness/treatment pair will mean the exclusion of another illness/treatment pair.14 The next alternative we will look at is universal healthcare cover34"/(-"+'"-(3!(*"3,$*#32"(#&="234"()7'-"-(.<($3H"!(3'-(12&=%-"-()&2(3,,( members of society. An example of an universal healthcare system is that of Canadaâ&#x20AC;&#x2122;s, which is publicly-funded through taxes. Provided under the Canada Health Act, health services are mostly free and the Canadian [e(( @4>(LLeL/(:!($*"(_2"4&'(S3$%&'%'4(@,3'(F3%2c 14 The example that Daniels gives is if extrarenal transplants are removed from coverage and no higher priority services, unavailable before $*"(1,3'/(32"(3--"-/($*"'(#722"'$(Y"-%#3%-(2"#%1%"'$!(0%,,(,&!"(!&5"(!"2=%#"!(3'-($*"(*"3,$*(."'"+$!($*"<(12&-7#">

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government provides funding through public tax money. As Allen Bu#*3'3'(1&%'$!(&7$/($*%!(!<!$"5(&) (P"')&2#"-(."'"+#"'#"Q(2"a7%2"!(3!!%!tance from citizens to contribute toward a common goal for a society.15 The required assistance in this case would be in the form of taxation and the common goal would be a minimum level of healthcare. Buchanan 3247"!($*3$($*%!()&25(&) ("')&2#"-(."'"+#"'#"(%!(P'"#"!!32<($&(&="2#&5"( the individual’s incentive to withhold contribution by imposing penalties for his own failure to contribute and by assuring him that others will contribute.”[\ Criticism of this system is mainly brought forth by conserva$%="(,%."2$32%3'!(0*&(-"#,32"($*3$("')&2#"-(."'"+#"'#"(%!(7'K7!$(."#37!"( it violates moral rights through government interference and coercive taxes and supports something that not every citizen necessarily wants. A counterargument to the conservative libertarian views would be from a Rawlsian point of view, which would argue that a social contract is set up between the government and its citizens, and certain government actions $*3$("a73,%f"($*"(-%!$2%.7$%&'(&) (K7!$%#"(3'-(32"(."'"+#%3,(&="23,,(!*&7,-( be permissible. Another alternative is a free market system of health insurance. A free market in healthcare would eliminate the need for employer-based health insurance and independent purchases of healthcare coverage. :-"3,,</($*%!(!<!$"5(0&7,-('&$(&',<(-2%="(-&0'($*"(12%#"!(&) (%'!723'#"( premiums by spreading insurance costs over more people, but would also allow individuals to make the choice of buying the healthcare coverage they could actually afford. The practicality of free market systems has been widely criticized, most famously by Karl Marx, who claimed that free markets are dehumanizing. Marx noted that in a free market system, owners of capital have “superior bargaining positions” to manipulate prices at their discretion. As a result, everyone else in the system has little power to improve their own conditions and inequalities will compound and reinforce each other.[] With any free market system, even if it is for healthcare, there are various ethical problems. These problems, emphasized by Ronald Dworkin, are that 1) wealth is already unfairly distributed so very few people 15

A. Buchanan, The Right to a Decent Minimum of Health Care. The example used by Buchanan is enforcing the rules of the road to drive only on the right side. The joint efforts of citizens are the goal of safe driving with coordination of requirements in the form of road laws. [\(( @4>(\W/(X*"(S%4*$($&(3(B"#"'$(Y%'%575(&) (9"3,$*(E32"> []( (Y>(@&0"2/(S>(F3-"'/(@4>([MM>(X*"(Y&23,(F&7'-3$%&'(&) (@7.,%#(9"3,$*(3'-(9"3,$*(@&,%#<

The Princeton Journal of Bioethics

could actually afford adequate health insurance in a free market, 2) peo1,"(&)$"'$%5"!(*3="(%'!7)+#%"'$(8'&0,"-4"(3.&7$(*"3,$*(2%!8!($&(7'-"2stand their level of health and the type of coverage that is best suited for them, and 3) in a free market system, insurance companies can utilize an experience rating system where they can charge higher premium rates for people with greater health risks.[U Likely results of this system are that $*"(1&&2"!$/(0*&(#3''&$(3))&2-(3-"a73$"(*"3,$*#32"(%'($*"(+2!$(1,3#"/(0%,,( not be able to afford higher premiums and certain ethnic groups could be discriminated against due to higher susceptibility to certain diseases. Per Lawrence Gostin, â&#x20AC;&#x153;the government cannot be expected to take responsibility for assuring the health of each member of the popu,3$%&'j(.7$($*"(12"="'$%&'(&) (-%!"3!"(&2(-%!3.%,%$<(3'-($*"(12&5&$%&'(&) ( health, within reasonable resource constraints, provide the preeminent K7!$%+#3$%&'()&2($*"(4&="2'5"'$($&(3#$()&2($*"(0",)32"(&) (!&#%"$<>Q[W With all these issues in the free market system and employer-based health insurance, some like Gostin may argue that other social determinants such as governmental regulation could serve as a counterbalance to market-induced inequalities.20 This brings us to the last alternative, which is universal government-managed insurance. Similar to universal healthcare, what a system like universal government managed insurance does is it creates a way for citizens to pool resources and share risks.21 Though the government should not be held accountable for assuring equal health in a society, it should, however, have oversight as to prevention and promotion of health. What this entails is that the government must be 2"!1&'!%.,"()&2(53'34%'4(*"3,$*(%'!723'#"(!&($*3$(3'(")+#%"'$(!<!$"5($*3$( works for the welfare of the nation is justly and properly administered and maintained, whether or not it is funded by public taxes or individual premium fees. Thus, blatant inequalities in our current employer-based health insurance, such as higher premiums for higher health risk workers, non-coverage for seasonal and part-time employees, and intermittent coverage from companies, can be abated with strong government actions and enforcement. The prime example of a successful government-managed health insurance program would be the veteranâ&#x20AC;&#x2122;s healthcare plan administered [U(( [W(( 20 L[((

S>(B0&28%'/(A&="2"%4'(;%2$7" @4>(e>(A"#72%'4(9"3,$*(&2(p7!$(9"3,$*(E32"c(X*"(d))"#$(&) ($*"(9"3,$*(E32"(A<!$"5(&'($*"(9"3,$*(&) (G5"2%#3 M. Power, R. Faden, The Moral Foundation of Public Health and Health Policy G##&2-%'4($&(Y>(@&0"2(3'-(S>(F3-"'/(P3,,(%'-%=%-73,!(0%$*%'($*"(1&&,(J&2(!&5"&'"(&'($*"%2(."*3,)O(538"(+'3'#%3,(#&'$2%.7$%&'!/(3'-( only those with medical needs of the sort for which risk protection is provided draw upon the pooled resources. Large pools allow the %'!72%'4("'$%$<($&(!12"3-($*"(2%!8(0%-",</($*"2".<(5%'%5%f%'4($*"(2%!8(&) (+'3'#%3,(27%'>Q

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.<($*"(;"$"23'(9"3,$*(G-5%'%!$23$%&'(J;9GO/(3(#&51&'"'$(&) ($*"(D>A>( B"132$5"'$(&) (;"$"23'!(G))3%2!($*3$(!"2="!(3!(3(132$(&) (%$!(5"-%#3,(3!sistance program for veterans. According to famous demographer Phillip `&'453'/($*"(;9G(*3!("=&,="-(%'$&(P3'(%'-7!$2<(,"3-"2(%'(%$!(!3)"$<(3'-( quality measures” of healthcare provisions. Longman explains that it is surprising to realize that “government bureaucracy is setting the standard for best practices while reducing costs, and it’s the private sector that’s lagging in quality.”22 Whether or not this claim for quality is completely $27"(%!(&1"'($&(!1"#7,3$%&'/(.7$(&'"($*%'4($*3$($*"(;9G(*3!(12&="'(%'( the years it has been in existence is that it can be maintained by the government to serve for the welfare of a large group of citizens. Despite the fact that the idea of universal government-managed *"3,$*#32"(!""5!($&(."(K7!$(3'-(0&7,-(."'"+$(5&!$(1"&1,"/(%$(-&"!(23%!"( several questions and potential problems. John Farmer raises these questions in a blog entry from 2010: “Who can we best trust to oversee health insurance? The federal government, with its spotty records for ")+#%"'#<j(&2(12%=3$"(%'!723'#"(.%40%4!(0*&!"(#*%") (%'#"'$%="(%!($&( %'#2"3!"(12&+$!(%'($*"%2(&0'(3'-($*"%2(!*32"*&,-"2!b(%'$"2"!$cQ23 Though Farmer harbors an obvious distrust in both the government and health insurance companies, he does raise a valid question: should we be allocating the decision-making process with regards to healthcare provisions and health insurance exclusively to one party? Looking from the point of =%"0(&) (3(12&1&'"'$(&) (_2"4&'(23$%&'%'4/(7'%="2!3,(*"3,$*#32"/(&2(4&=ernment-managed healthcare, the a similar aspect they all possess is the removal of these provisional decisions from the exclusive control of the health insurance market, which is what universal government-managed health insurance does. However, Farmer’s question is understood in another way, which is, should a third party even be involved in the decisionmaking behind healthcare provision and insurance decisions between a patient and doctor? We must determine whether it is just for any other entities besides the doctors themselves to intervene in order to determine $*"('3$72"(&) (*"3,$*#32"(12&=%!%&'(3'-($2"3$5"'$>(Y&23,,<(!1"38%'4/(:( $*%'8(%$(0%,,(."(-%)+#7,$($&(538"($*"(32475"'$(%'(!711&2$(&) (%'$"2="'tion on the doctor’s job as a health provider; however, this raises another problematic situation in which doctors could potentially abuse their pow"2!>(X*"(1&$"'$%3,()&2(3(42""-<(-&#$&2($&(&2-"2(+="(2&7'-!(&) (x623<(!#3'!( 22 23

P. Longman, The Best Care Anywhere. John Farmer, http://blog.nj.com/njv_john_farmer/2010/02/employer-based_health_care _is.html

The Princeton Journal of Bioethics

for a patient who only needs one calls for a system that has the power to &="2!""($*"(-&#$&2b!(-"#%!%&'!>(X*%!(2&,"(#3'(."()7,+,,"-(.<($*"(7'%="2!3,( government-managed healthcare system. The system must not only have the ability to enforce health regulations, but also have general oversight of collection of payments and doctorâ&#x20AC;&#x2122;s accounting statements. However, another concern behind this system is the age-old question of limited resources such that some might argue that the government simply does not have enough resources to adequately provide and manage health insurance for everyone. While it is true that resources are scarce for the newer medical treatment technologies, this is not the #3!"()&2($*"(5&2"(.3!%#($2"3$5"'$!($"#*'&,&4%"!(!7#*(3!($*"(YS:(53chine or CT scanners.24(k"$/($*"(D'%$"-(A$3$"!(03!(23'8"-(e]$*(&'($*"( ?&2,-(9"3,$*(_243'%f3$%&'b!(23'8%'4!(&) ($*"(0&2,-b!(*"3,$*(!<!$"5!(%'( 2000, even though our Expenditure Per Capita was number one in the 0&2,->o8y(A&($*"(a7"!$%&'(0"(!*&7,-(."(3!8%'4(%!('&$(0*"$*"2(0"(*3="( enough resources to provide adequate care for everyone, but rather how 0"(#3'(")+#%"'$,<(7!"(&72(#722"'$(2"!&72#"!($&(12&=%-"(3-"a73$"(#32"( )&2("="2<&'">(:$(!""5!($*3$(7'-"2(&72(#722"'$(!<!$"5(&) ("51,&<"26.3!"-( *"3,$*(%'!723'#"/(0"(32"('&$(")+#%"'$>(X*7!/(0"(57!$(*3="(!&5"(!&2$(&) ( solution that restructures our system of healthcare provisions and elimi'3$"!(%'")+#%"'#%"!(%'(*"3,$*#32"(!1"'-%'4>( Straightforward solutions to this problem are to look back on federal spending, health insurance spending, and overall medical care costs, and then determine which unnecessary programs and procedures #3'(."(#7$($&(%512&="(&="23,,(")+#%"'#<>(G(#&7'$"232475"'$($&($*%!( would be that cuts will have to be made on other important programs such as education and defense. To this counterargument, my response is that public opinion through voting should then be used to determine 0*%#*(!"#$&2($&(#7$(%'!$"3-(&) (2",<%'4(&'(17.,%#(&)+#%3,!($&(-"$"25%'"( 0*"2"($&(#7$>(_) (#&72!"/($*"!"(!&,7$%&'!(53<(!""5($&&(%-"3,%!$%#(3'-(%5practical to implement any time soon, but as Phillip Longman, Schwartz Senior Fellow at the New America Foundation, and formerly a senior 02%$"2(3'-(-"17$<(3!!%!$3'$(53'34%'4("-%$&2(3$(D>A>(l"0!(T(?&2,-(S"port, asserts, â&#x20AC;&#x153;it is still worth thinking about how the private health-care %'-7!$2<(o3'-("51,&<"26.3!"-(*"3,$*(%'!723'#"y(5%4*$(."(2"!$27#$72"($&( LN(( G##&2-%'4($&(_243'%f3$%&'()&2(d#&'&5%#(E&6&1"23$%&'(3'-(B"=",&15"'$(J_dEBO(9"3,$*(B3$3(LM[M/($*"(D'%$"-(A$3$"!(*3-($*"( L'-(5&!$(YS:(53#*%'"!(1"2(5%,,%&'(1&17,3$%&'!(0*%,"(p313'(*3-($*"(5&!$>(X*%!(%!(+="($%5"!(5&2"($*3'($*"(D'%$"-(q%'4-&5b!(YS:( machines per million populations. Some of the other categories that the U.S. takes the lead are total expenditure on health per capital J@@@O(J[!$O/(Y355&4231*!(1"2(5%,,%&'(1&17,3$%&'!(Je2-O/(3'-($*"('75."2(&) (3#$%="(12&)"!!%&'3,('72!"!(1"2(5%,,%&'(1&17,3$%&'!(JN$*O>(

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3,,&0(%$($&(-&(0*3$($*"(;9G(*3!(-&'">Q( Since we’ve looked at these major alternatives, we will now return to my previous point where a strategy that is most just needs to be determined. What we see is that major questions and problems arise in all of these alternative systems. However, some do appear to be more K7!$($*3'(&$*"2!>(:'(5<(&1%'%&'/($*"(7'%="2!3,(4&="2'5"'$653'34"-( health insurance system, despite its downsides, provides the fairest outcomes for citizens, just purely based on the facts that 1) no apparent moral rights could be restricted in this system,25 2) no inequalities could be maintained,L\(3'-(eO(."'"+$!(#&7,-(3#$73,,<(."("H13'-"->L] X&()72$*"2(",3.&23$"/(:(0%,,(.2%"i<(5"'$%&'($*"(@3$%"'$(@2&$"#$%&'( 3'-(G))&2-3.,"(E32"(G#$(J@@GEGO(3'-($*"(9"3,$*(E32"(3'-(d-7#3$%&'( S"#&'#%,%3$%&'(G#$(&) (LM[M>(:(.",%"="($*"!"(3#$!(32"(4&&-(!$"1!(%'($*"( direction of creating a just system of health insurance, especially with its provisions of better coverage for those with pre-existing conditions, improved prescription drug coverage in Medicare, extension of the life of the Medicare Trust fund by at least 12 years, and its requirement for employers with more than 200 employees to automatically enroll employees into health insurance plans offered by the employer.LU However, this current health care reform is also marred with potential problems such as raising healthcare costs and taxes on the middle class and increasing the national debt. Critics argue that these bills are unsatisfactory because they do not actually allow the general public to completely detach itself from its reliance on employer-based insurance and private insurance companies. A step in the right direction, as critics would argue, should be some sort of “public option” health insurance, that allows the government to operate its own health insurance agency that competes with both employer-based health insurance as well as private insurance. Critics claim that only through a government-managed program could we potentially lower the cost of insurance premiums for citizens since it would foster competition amongst healthcare providers and improve &="23,,(")+#%"'#%"!(%'($*"(*"3,$*#32"(5328"$>(:$(%!("'$%2",<(1&!!%.,"(3'-( even very likely that with a “public option” program run by the government, all the aforementioned improvements will happen; however, LZ(( E&5132"-($&(7'%="2!3,(*"3,$*#32"(0%$*("')&2#"-(."'"+#"'#" L\(( E&5132"-($&(.&$*()2""65328"$(!<!$"5(3'-("51,&<"26.3!"-(*"3,$*(%'!723'#"(0%$*(1&$"'$%3,(-%!#2%5%'3$%&'(343%'!$(#"2$3%'(1"&1,"(3'-( groups L](( E&5132"-($&(_2"4&'(23$%&'%'4(3!(3(f"2&6!75(435" LU(( X38"'()2&5(q3%!"2(F35%,<(F&7'-3$%&'n(A75532<(&) (l"0(9"3,$*(S")&25(`30

The Princeton Journal of Bioethics

there are also some potential problems that arise from the “public op$%&'Q(!<!$"5>(_'"(1&$"'$%3,(12&.,"5(%!($*3$(0%$*(3'<(!&2$(&) (#&51"$%tive market, larger corporations still might have the competitive edge to meet consumer needs through superior services. A good example of this would be the postal industry where private companies such as FedEx and UPS compete with the federal government’s United States Postal Service JDA@AO>(S"#"'$,</($*"(DA@A(*3-($&(#7$(.3#8(42"3$,<(&'(%$!(!1"'-%'4(-7"( to poor performance and negative net incomes while both FedEx and D@A(!$%,,(2"53%'"-(12&+$3.,">LW/eM Because the USPS must still take on the burden of delivering regular mail while competing with FedEx and UPS on package deliveries, just like how the U.S. government would still have to take on the burden of providing Medicaid and Medicare while competing with large insurance companies if a “public option” plan were implemented, it is possible that this system could go down the same path that the USPS has gone and prove to be unsuccessful. Another problem with any competitive market is that insurance companies might employ questionable tactics to retain customers and maintain a sustainable competitive advantage. Tactics employed by insurance companies such as increasing premiums and reforming denial of coverage policies after signing the contract greatly restrict customers’ ."'"+$!(3'-(37$&'&5<> Additionally, with a competitive market, insurance could be more inclined to cut corners in order to lower the costs of healthcare provisions. The stated problem above is also true for a free market system; however, because the government has more resources at its disposal and greater bargaining powers, the positive aspect of a “public option” is a greatly lowered price of insurance premium. Whether or not this lower premium translates into a superior competitive advantage that overtakes employer-based insurance and private insurance is open to debate, but it is clear that even with the “public option” there are potential problems that must be evaluated before it is implemented. l"="2$*","!!/(:(.",%"="(%$(%!(7!")7,($&($*%'8(&) (03<!($&(%'#&21&rate positive aspects from each of the alternatives mentioned above to help reform our current system. This will provide us with a superior 3,$"2'3$%="($*3$(!*&7,-(."(.&$*(K7!$(3'-(."'"+#%3,()&2(!&#%"$<>(9&0"="2/( the ultimate goal of my paper was to examine these various systems and LW(( X*%!(*3!(12&51$"-($*"(4&="2'5"'$($&(#&'!%-"2(#7$$%'4(-",%="2<($&(+="(-3<!(1"2(0""8(%'!$"3-(&) (!%H> eM(( @2&+$($2"'-!($38"'()2&5(?%8%1"-%3("'$2%"!(&'(DA@A/(D@A/(3'-(F"-dH>(

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-"$"25%'"(0*%#*(&'"(%!($*"(5&!$(K7!$>(:'($*"("'-/(%$(!""5!($&(5"($*3$( the universal government-managed healthcare system is the most just because it is able to cover the most citizens in a nation, eliminate social inequalities in our current system of employer-based health insurance and private insurance, and potentially lower the cost of insurance premiums for those who need it the most.

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Work Cited C7#*3'3'/(G,,"'(d>(J[WUNO(PX*"(S%4*$($&(3(B"#"'$(Y%'%575(&) (9"3,$*( Care,” Philosophy & Public Affairs/(=&,>([e/('&>([(ZZ6]U> B3'%",!/(l&253'>(J[WW[O(P:!($*"(_2"4&'(S3$%&'%'4(@,3'(F3%2c/Q(JAMA: The Journal of the American Medical Association/(=&,>(L\Z/('&>([]( 2232-35. B0&28%'/(S>(JLMMLO(Sovereign Virtue: The Theory and Practice of Equality. J932=32-(D'%="2!%$<(@2"!!O> Farmer, J. http://blog.nj.com/njv_john_farmer/2010/02/employerbased_health_care _is.html p"#8"2/(l3'#<(A>(J[WWeO(PE3'(3'(d51,&<"26C3!"-(9"3,$*(:'!723'#"(A<!tem Be Just?,” Journal of Health Politics, Policy and Law/(=&,>([U/('&>( e(\Z]6]e> V&!$%'(`_> J[WWNO(PX*"("))"#$(&) ($*"(*"3,$*(#32"(!<!$"5(&'($*"(*"3,$*(&) ( America,” Securing health or just health carec(JA$(`&7%!(D'%=(`30O(p( eWn] Kaiser Family Foundation, The Uninsured: A Primer, Key Facts about G5"2%#3'!(0%$*&7$(9"3,$*(:'!723'#"/(JY"',&(@328/(EGn(q3%!"2( F35%,<(F&7'-3$%&'/(LMMUO `&'453'/(@>J 2005) The Best Care Anywhere. Washington Monthly e]neUz NU> Powers M, Faden R. JLMM\O Social Justice: The Moral Foundation of Public Health and Health Policy>(_H)&2-(@2"!!/(l"0(k&28/(lk>

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The Ethical Care of Intersex Infants: Normalizing Genitalia at the Expense of Well-Being Alyssa Thomas ’13 Brown University

$b!($*"(+2!$(a7"!$%&'('"0(132"'$!(3!8(3'-($*"(+2!$(a7"!$%&'()35%,<(3'-( )2%"'-!(3!8('"0(132"'$!n(P:!(%$(3(.&<(&2(%!(%$(3(4%2,cQ(?*3$(*311"'!( when an infant is born with ambiguous genitalia, when she or he cannot ."(2"3-%,<(#,3!!%+"-(3!("%$*"2(!"Hc(X*"("'!7%'4(13'%#(#3'(*3="(,&'46,3!$%'4( and often negative consequences for the child. Until recently, the medical profession has reinforced a binary gender system, which categorizes all humans at birth as either male or female. This assumption about sex 3'-(4"'-"2(%'=&,="!($*"(3,%4'5"'$(&) (4"'%$3,%3(J&2($*"(1*<!%#3,(&7$032-( appearance of males and females) with a socially constructed gender J53!#7,%'"(3'-()"5%'%'"O>( Precisely because intersex individuals defy extant gender and sex norms, the treatment of intersex infants and children affords the perfect opportunity to apply a person-centered approach to care. Medical profes!%&'3,!(32"($*"(+2!$(,%'"(&) ($2"3$5"'$()&2(#&'4"'%$3,(#&'-%$%&'!/(0*"$*"2( they are truly life threatening or if they only threaten our normative sexual categories. The treatment of any congenital condition has the potential to change the outcome of an individual’s entire life. An approach which values honesty, openness, and a careful consideration of options can lead to self-acceptance, while a rash surgical approach can lead to a life of secrecy and shame. X*"(:'$"2!"H(A&#%"$<(&) (l&2$*(G5"2%#3'("!$%53$"!($*3$(%'(31proximately 1 in 1,500 U.S. births, an infant is born with atypical genitalia.1 Certain conditions, such as congenital adrenal hyperplasia or Klinefelter Syndrome, cause clitoromegaly or micropenis, ‘abnormalities’ which are most often the focus of bioethical literature. However, these numbers overlook those individuals whose chromosomal or hormonal conditions are subtler or not diagnosable until puberty.2 For the treatment of intersex infants, the medical focus is on disambiguating the genitalia. As the child grows older, hormone therapy can be used to cement the assigned sex. This approach is steeped in societal beliefs about ‘correct’ genitalia and the medical implementation of these beliefs at the expense of the child’s rights. 1 L(

Intersex Society of North America>(l>1>/('>->(?".>(](Y3<(LM[[>(s*$$1ngg000>%!'3>&24gt>( :.%->

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p7!$%+#3$%&'!()&2($*"!"(12&#"-72"!($23-%$%&'3,,<(2"!$(&'($*"(%-"3( that intersexuality is a pathological condition. Sex/gender must be aligned immediately for fear that if the child remains intersex he or she will suffer future depression and even suicide. However, studies have shown no correlation between retaining ambiguous genitalia and psychological distress on the part of the intersex individual;3 in fact, in the past twenty years intersex adults have stridently advocated against genitalnormalization in infants. Historical and current responses to intersexuality often diverge from person-centered care. Examining these responses will help illuminate an ethical approach to intersex infants that places their human right to self-determination at the forefront of care. Historical precedent for treatment of intersex infants The current treatment of intersex infants is rooted in the suppo!%$%&'!(&) (p&*'(Y&'"<(3'-(p&*'!(9&18%'!(D'%="2!%$<(-72%'4($*"([WZM!>( The approach, now known as “optimal gender of rearing,” claimed that gender was pliable in early childhood, such that social upbringing could cement gender identity to a greater extent than biology.4 This social engineering of gender required aligning the child’s ‘abnormal’ genitalia with genitalia appropriate for the assigned gender. X&($*%!("'-/(5&!$(#*2&5&!&53,,<(53,"(#*%,-2"'(0%$*(u%'3-"a73$"b(J,"!!( than 2.5 cm long) penises were reassigned to the female sex and had their penises reconstructed into an acceptably sized clitoris.5 “Feminizing genitoplasty as opposed to masculinizing genitoplasty requires less surgery to achieve an acceptable outcome and results %'()"0"2(72&,&4%#(-%)+#7,$%"!>Q\ :'(!%51,"2($"25!/(%$(%!()32("3!%"2($&(#&'!$27#$(3(u)7'#$%&'3,b(=34%'3($*3$(%$( is to construct an adequate penis. According to this model, a functional vagina need only act as an insensitive, “receptive hole,” while the penis must be capable of achieving erection and ejaculation.] Simultaneously, doctors advised the parents of the now ‘females’ to dress the children in pink and encourage traditionally female behavior and activities. This method instigates a culture of concealment that is an intrinsic part of this approach to intersexuality. However, most critics now consider the “John/Joan” case on which this model is built to be a 3 (:.%-> 4 (( B"(Y32{3(G23'3/(Y32#7!>(PG(9753'(S%4*$!(:'="!$%43$%&'(%'$&($*"(Y"-%#3,(&) (ul&253,%f3$%&'b(&) (:'$"2!"H(@"&1,">Q(Human Rights Commission of the City and County of San Francisco (LU(G12>(LMMZn([6[[M>(@2%'$>(@34"([L>( 5 (( B2"4"2/(G,%#"(B&5723$>(PbG5.%47&7!(A"Hb(6(&2(G5.%=3,"'$(Y"-%#%'"cn(d$*%#3,(:!!7"!(%'($*"(X2"3$5"'$(&) (:'$"2!"H73,%$<>Q(Hastings Center Report(JY3<([WWUOn(LN6eZ>(@2%'$>(@34"(LU 6 (( `""/(@"$"2(G/("$(3,>(PE&'!"'!7!(A$3$"5"'$(&'(Y3'34"5"'$(&) (:'$"2!"H(B%!&2-"2!(>Q(Pediatrics([[U>L(JLMM\On(NUU6ZMM>(American Academy of Pediatrics>(?".>(](Y3<(LM[[>(s*$$1ngg3311&,%#<>33117.,%#3$%&'!>&24g#4%g#&'$"'$g)7,,g1"-%3$2%#!R[[UgLg"NUUt>( 7 (( B2"4"2/(G,%#"(B&5723$>(PbG5.%47&7!(A"Hb(6(&2(G5.%=3,"'$(Y"-%#%'"cn(d$*%#3,(:!!7"!(%'($*"(X2"3$5"'$(&) (:'$"2!"H73,%$<>Q(Hastings Center Report(JY3<([WWUOn(LN6eZ>(@2%'$>(@34"(LW

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#&51,"$"()3,,3#<>(:'([W\Z/(3(53,"(%-"'$%#3,($0%'(.3.<(J'&$(%'$"2!"H73,O(03!( undergoing a circumcision when a doctor accidentally burned off the infant’s penis. Subsequently, John Money and the Hopkins group recommended that the little boy be raised as a female, with surgery to construct female-appearing genitalia and a female psychosocial upbringing. The truth of his condition was concealed until the child’s teen years, at which point he resumed his male identity.U While this individual was not born intersex, his nonconsensual sex change is very similar to the experiences &) (%'$"2!"H(1"&1,">(:$(%!(#,"32()2&5($*%!(#3!"($*3$(3,$"2%'4(4"'%$3,($%!!7"( does not in fact change an individual’s gender or sex. Normalizing interventions can only force a child to conform to social mores but cannot 3,$"2(*%!(&2(*"2(%-"'$%$<>(:$(%!(3,!&(%51&!!%.,"(7'-"2(5&!$(#%2#75!$3'#"!($&( reverse the effects of these surgeries. Until a child can advocate for his own sexual and gender identity, irreversible procedures are dangerously hit or miss. A psychosocial emergency… for whom? Western societies conform to the mutually exclusive male-female dichotomy and any deviation from these norms provokes severe anxiety. Consequently, the medical treatment of these intersexed children is intended to assuage any ambiguity. However, immediate gender-normal%f%'4(!724"2<(%!(232",<(3(5"-%#3,('"#"!!%$<>((:'!$"3-/(P-&#$&2!(3#$(a7%#8,<( not because the infant is in any medical danger, but ‘to spare parents the trauma of seeing their child as intersexed each time they change the infant’s diaper.’”W(:$(%!()&2($*"(132"'$!b(#&5)&2$(3'-(3##"1$3'#"(&) ($*"(#*%,-( $*3$(!724"2%"!(&)$"'(&##72(%'($*"(+2!$(5&'$*!(3)$"2(3(#*%,-b!(.%2$*>(_) ( #&72!"/(132"'$3,(#&7'!",%'4(#&7,-(!"2="($*"(!35"(1721&!"/(.7$(3(a7%#8(+H( is far more alluring. As a medical professional, buying into a strict sexual binary treats those who fall outside of recognizable gender categories as unwanted aberrations. This is not to say that parents and the medical profession intend to harm the child. However, they often believe that normalization will 3,,&0($*"(#*%,-($&("!#31"(.7,,<%'4(3'-(+$(%'$&(*%!(&2(*"2(1""2(42&71>(X*"<( fear that the child will suffer irreparable psychological damage because he or she feels or looks different from other children. However, this #&'$%'7"-("51*3!%!(&'(3(+H"-(4"'-"26!"H(!<!$"5(-&"!('&$(!132"(#*%,-2"'( $*"!"()"",%'4!(&) ("5.3223!!5"'$(&2(!*35">(:'!$"3-/(3!(C"$!"<(B2%="2/( .&2'(0%$*(#&'4"'%$3,(3-2"'3,(*<1"21,3!%3/($"!$%+"-/(P3,,(&) ($*"(!724"2%"!( 8 (( B"(Y32{3(G23'3/(Y32#7!>(PG(9753'(S%4*$!(:'="!$%43$%&'(%'$&($*"(Y"-%#3,(&) (ul&253,%f3$%&'b(&) (:'$"2!"H(@"&1,">Q(Human Rights Commission of the City and County of San Francisco (LU(G12>(LMMZn([6[[M>(@2%'$>(@34"([e>( 9 Ford, Kishka-Kamari. “First, Do No Harm: The Fiction of Legal Parental Consent to Genital-Normalizing Surgery.” Yale Law and Policy Review([W>L(JLMM[On(N\W6NUU>(JSTOR>(?".>(](Y3<(LM[[>(s*$$1ngg000>K!$&2>&24g!$3.,"gNMLeWZ]L(>t>(@34"(N]]>

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and attention taught her that her body was unacceptable and something of which to be ashamed.”10 The surgeries, which often must be repeated 3!($*"(#*%,-(42&0!/(0"2"(P%'$"'-"-($&(3!!734"()"",%'4!(&) (-%))"2"'#"(o.7$y( only served to highlight their stigma.”11 Treating intersex children as grotesque seeds a lifetime of selfhatred and shame. Physicians must not only know when to perform surgery, but even more importantly, when to withhold an unnecessary surgery. A physician’s primary goal should always be to serve the best interests of his or her patient, not to ameliorate the discomfort of family members or society as a whole. Consequently, a person-centered approach would involve recognizing a family’s discomfort and offering counseling, while at the same time considering the person that is the intersex infant and truly questioning the consequences of treating his or her birth as an emergency. Consent or lack thereof? Consent is a key complicating factor in any discussion of the ethics of genital-normalizing surgery on an infant. The infant is unable to give informed consent for any medical procedures performed because of “underdeveloped communication and comprehension abilities.”12 Therefore, the parents must speak for their infant, under the assumption that “parents, as the natural guardians of their children, are best situated and best able to make important decisions on their behalf.”13(:$(0&7,-( be thoughtless to say that parents should not be able to make medical decisions on an infant’s behalf. But the crucial question to ask is, how informed is the parents’ decision? Bewildered parents, grieving the loss of one image of their child, are presented with a way to normalize an ‘abnormal’ child, to rekindle their dreams for a child who can be socially accepted. However, surgeries can be performed when a child is old enough $&(4%="(%')&25"-(#&'!"'$(3'-(0"%4*($*"(."'"+$!(3'-(2%!8!>(d#*&%'4($*"( =&%#"!(&) (53'<(&$*"2(%'$"2!"H(%'-%=%-73,!(0*&($"!$%+"-(3$($*"(A3'(F23'cisco Human Rights Commission, Ms. Eli seMbessakwini, born with clitoromegaly, “feels that the integrity of her body and her trust was taken from her when there was never anything wrong with her body.”14 The same SF Human Rights Commission report noted that most adult 10 (( B"(Y32{3(G23'3/(Y32#7!>(PG(9753'(S%4*$!(:'="!$%43$%&'(%'$&($*"(Y"-%#3,(&) (ul&253,%f3$%&'b(&) (:'$"2!"H(@"&1,">Q(Human Rights Commission of the City and County of San Francisco (LU(G12>(LMMZn([6[[M>(@2%'$>(@34"(e[>( 11 Ford, Kishka-Kamari. “First, Do No Harm: The Fiction of Legal Parental Consent to Genital-Normalizing Surgery.” Yale Law and Policy Review([W>L(JLMM[On(N\W6NUU>(JSTOR>(?".>(](Y3<(LM[[>(s*$$1ngg000>K!$&2>&24g!$3.,"gNMLeWZ]L(>t>(@34"(NUZ> 12 (( :.%->(@34"(N]]> 13 (( :.%->( 14 (( B"(Y32{3(G23'3/(Y32#7!>(PG(9753'(S%4*$!(:'="!$%43$%&'(%'$&($*"(Y"-%#3,(&) (ul&253,%f3$%&'b(&) (:'$"2!"H(@"&1,">Q(9753'(S%4*$!( E&55%!!%&'(&) ($*"(E%$<(3'-(E&7'$<(&) (A3'(F23'#%!#&((LU(G12>(LMMZn([6[[M>(@2%'$>(@34"(eN>(

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men with small penises and most adult women with large clitorises would not want these parts of their bodies removed.15 Thus, parents providing their consent on behalf of intersex infants should take into account that as adults, these infants likely would not have given consent for surgery. Another intersex witness in the report, Mr. Peter Trinkl, said, “he wishes that the genital surgery had not been done on him. He believes that it is shortsighted to believe that intersex people can be treated through genital surgery.”[\ Trinkl “is opposed to genital surgeries that are not medically necessary and are performed without the informed consent of the patient.”[](X*"(,"43,(.,&#83-"(&) (132"'$3,(#&'!"'$(3$(+2!$(!""5!(%51"'"trable. Nonetheless, it is crucial to examine consent in the case of surgery or treatment with such life-changing consequences. Medical professionals and parents must carefully consider whether they are choosing what is best for the infant in the long term, or if their decisions are colored by a desire for the child to be ‘normal.’ Surgery and stigma: The ethics of secrecy Surgery treats intersex children as pathological, rather than as &7$,%"2!(&'(3(="2<(.2&3-(!1"#$275(&) (!"H73,(3'3$&5<>(:'(8""1%'4(0%$*($*"( ‘optimal gender of rearing’ model, the purpose and diagnosis behind the surgeries and hormone injections are not always revealed to the intersex child as he or she grows up. Mr. Jimmy Bruce, an intersex person born with micropenis and assigned a female gender, felt “manipulated and abused by his parents” and “believed that they lied to him by omission and that they were removing his self-determination by telling him what gender to be.”[U(X*"(-"#"1$%="(123#$%#"!v0%$**&,-%'4(5"-%#3,(2"#&2-!/( '"4,"#$%'4($&(2"="3,(-%34'&!"!v32"(7'"$*%#3,(."#37!"($*"<(-"'<($*"( %'$"2!"H(1"2!&'(3##"!!($&(3'(%'$%53$"(3!1"#$(&) (*%!(&2(*"2(&0'(%-"'$%$<>(:$( also implies that there is a right way to exist as a sexual human being, and that “children who challenge these categories should be reconstructed $&(+$(%'$&(J3'-($*"2".<(2"%')&2#"O($*"5>Q[W The failure of physicians and families to communicate honestly with the intersex individual will only compound feelings of shame and abnormality. Secrecy not only affects a child’s self-perception but also directly *325!($*"()35%,<b!(-<'35%#!>(E*"2<,(E*3!"/($*"()&7'-"2(&) (:AlG(3'-( an intersex person, writes, “because her parents were not free to communicate the fear, shame and grief, they developed anger toward me, the 15 (( :.%->(@34"(L[> 16 (( :.%->(@34"(ee> []( (( :.%->( 18 (( :.%->(@34"(eZ>( 19 (B2"4"2/(G,%#"(B&5723$>(PbG5.%47&7!(A"Hb(6(&2(G5.%=3,"'$(Y"-%#%'"cn(d$*%#3,(:!!7"!(%'($*"(X2"3$5"'$(&) (:'$"2!"H73,%$<>Q(Hastings Center Report JY3<([WWUOn(LN6eZ>(@2%'$>(@34"(LW

The Princeton Journal of Bioethics

proximal cause of their suffering.”20 The parents’ impulse toward secrecy stems from the ‘optimal gender of rearing’ model and is a defense mech3'%!5($&(12&$"#$($*"(#*%,-(J$*"<(.",%"="O(3'-(12&$"#$($*"('&253,#<(&) ($*"( family. However, instead of leading to mutual acceptance, this deception allows negative feelings to fester in the parent-child relationship. Conclusion: A person-centered treatment plan A person-centered approach means separating societal expectations from the individual plan that is best suited to a child’s well-being. Physicians and families, in order to serve this well-being, should understand that the assumption of gender-sex alignment is unnecessarily -%#*&$&5&7!>(X*"(23'4"(&) ('&253,#<(%'(4"'%$3,%3(%!(32.%$232%,<(-"+'"-( 0%$*&7$(3(#&51,"$"(7'-"2!$3'-%'4(&) ($*"(2"3!&'!()&2($*"!"(-"+'%$%&'!>( Linking a child’s body to his or her self-worth as an adult is not only a harmful practice but also a misleading one. Men with small penises and women with large clitorises have consistently said that they “can and do learn to be sexual in ways that satisfy both themselves and their partners.”21(G!(0%$*(3'<(-%))"2"'#"v%'$",,"#$73,(&2(1*<!%#3,v$*"(4&3,( must be to accept and appreciate the individuals along with, rather than in spite of, these differences. Consequently, although it may seem more -%)+#7,$($&(53%'$3%'($*"(35.%47&7!(4"'%$3,%3/(-&%'4(!&(%!($*"(13$%"'$6 centered approach. This is not to say that these children should be raised %'(3($*%2-(#3$"4&2<(&) (u%'$"2!"HbR(%'()3#$/($*"(:'$"2!"H(A&#%"$<(&) (l&2$*( America expressly advocates assigning a male or female gender after hormonal and genetic tests have been done.22 However, the gender assigned in infancy is only preliminary and without surgery during infancy, sexual genitalia may be changed later in life to match the gender identity &) ($*"(#*%,->(G!!%4'%'4(3(4"'-"2(3,,&0!($*"(#*%,-($&(5&2"(2"#&4'%f3.,<(+$( into social settings, while retaining the genitalia permits the child to experience adult life with the sexual characteristics of his or her choosing, rather than those assigned at birth by a physician. As they grow, children must be given the opportunity to develop their own sense of gender identity and decide for themselves the extent to which they wish to alter their bodies permanently. This collaboration between parent, child, and physician requires a unique combination of trust, patience, and acceptance of uncertainty. Keeping these ideals in mind will reinforce the person-centered approach to intersexuality and lead to more favorable outcomes for intersex infants. 20 (B"(Y32{3(G23'3/(Y32#7!>(PG(9753'(S%4*$!(:'="!$%43$%&'(%'$&($*"(Y"-%#3,(&) (ul&253,%f3$%&'b(&) (:'$"2!"H(@"&1,">Q(Human Rights Commission of the City and County of San Francisco (LU(G12>(LMMZn([6[[M>(@2%'$>(@34"(eU>( 21 (:.%->(@34"(L[>( 22 Intersex Society of North America>(l>1>/('>->(?".>(](Y3<(LM[[>(s*$$1ngg000>%!'3>&24gt>(

Princeton Bioethics Conference

The Hard Case: Enrolling Dementia Patients in High-Risk, No-Benefit Research Raafay Syed ’12 Johns Hopkins University In this paper, I will highlight some of the ethical issues at play in the enrollment of -#9#,'(%$:%'(#,'+$(,$&#+#%&)"8$;:#)(7)%**<=$>$1(**$2.)5+$.,$'"#$"%&-$)%+#$(,0.*0(,?$-#9#,'(%$:%tients as participants in research that poses greater than minimal risk, yet does not hold out the :&.+:#)'$.2 $-(&#)'$@#,#7'$2.&$'"#$(,-(0(-5%*$+5@A#)'8$B2'#&$:&#+#,'(,?$'"&##$,.&9%'(0#$:.+('(.,+$ on the issue, I ultimately defend the third position that consent by a surrogate decision-maker C;DEF$(+$,.'$+527)(#,'$'.$%**.1$+5)"$&#+#%&)"$%,-$'"%'$G#+#%&)"$B-0%,)#$D(&#)'(0#+$CGBD+F$ present the only ethically feasible option for such research to occur. Finally, I present some further avenues of inquiry into RADs which might help aid their implementation in the most practical and effective manner.

Introduction As the population of America continues to age at a staggering rate, -%!"3!"!($*3$(5&!$(!%4'%+#3'$,<(3))"#$($*"(",-"2,</(!7#*(3!('"72&-"4"'"23$%="( #&'-%$%&'!(,%8"(-"5"'$%3/(0%,,(1&!"(%'#2"3!%'4,<(-%)+#7,$(#*3,,"'4"!()&2(&72( society. Alzheimer’s Disease is the sixth-leading cause of death across all 34"!(%'($*"(D'%$"-(A$3$"!/(3'-(%!($*"(+)$*6,"3-%'4(#37!"(&) (-"3$*(35&'4( $*"(",-"2,<>(C<(LMZM/($*"2"(%!(3(12&K"#$"-([eM^(%'#2"3!"(%'($*"('75."2(&) ( new cases.1 The increased prevalence of Alzheimer’s Disease and other dementias will have a profound impact on care-givers, health systems, health care professionals, and society at large. For this reason, research on Alzheimer’s Disease and other dementias is of utmost importance, and should be regarded as one of the most pressing concerns for medical 2"!"32#*>(:'(&2-"2($&(!$7-<($*"('"72&.%&,&4%#3,(5"#*3'%!5!($*3$(7'-"2,%"( $*"!"(#&'-%$%&'!(3'-($"!$($*"(")+#3#<(&) (-274!(3'-($2"3$5"'$!/(2"!"32#*"2!( must examine the population of people who actually suffer from these conditions for the results to have any potential therapeutic value. Therefore, there is a growing need for more individuals with dementia-related disorders to enroll in research studies. Procedural issues regarding who should make decisions in the case of incompetency are some of the most important areas for ethical analysis. Since many dementia patients have cognitive decline, impaired judgment, and loss of memory, they no longer retain the ability to make their own decisions.1 Before delving into the procedural ethics of enrollment, it is 31

The Princeton Journal of Bioethics

important to clarify the different classes of research, since the relevant factors at play will depend on the type of research under discussion. ( G,$*&74*(3,,(2"!"32#*(%!/(.<(-"+'%$%&'/('&'6$*"231"7$%#/(%$(#3'(!$%,,(."( categorized into two different groups: research which holds out the pros1"#$(&) (-%2"#$(."'"+$()&2($*"(%'-%=%-73,(!7.K"#$/(3'-(2"!"32#*(0*%#*(3%5!( 5"2",<($&(3-=3'#"(4"'"23,%f3.,"(!#%"'$%+#(8'&0,"-4"(0%$*&7$(3'<(12&!1"#$( &) (-%2"#$(."'"+$()&2($*"(%'-%=%-73,(!7.K"#$>(F72$*"25&2"/(&'($*"(.3!%!(&) ( D>A>(F"-"23,(S"47,3$%&'!/(2"!"32#*(%!(#,3!!%+"-(3##&2-%'4($&($*"(,"=",(&) (2%!8( to which human subjects will be exposed. The concept of “minimal risk” !"2="!(3!(3($*2"!*&,-/($*3$(3,,&0!(:SC!($&(12&$"#$(=7,'"23.,"(1&17,3$%&'!/( including incompetent persons.2 Research studies that pose no greater than minimal risk are usually uncontroversial, at least with respect to the ethics of enrollment. Studies that pose greater than minimal risk and hold &7$($*"(12&!1"#$(&) (-%2"#$(."'"+$()&2($*"(%'-%=%-73,(!7.K"#$/(3,$*&74*('&$( as presumptively uncontroversial, are at least straightforward in the sense that a best-interests analysis is possible. Lastly, there are research studies that pose greater than minimal risk GlB( -&( '&$( *&,-( &7$( $*"( 12&!1"#$( &) ( -%2"#$( ."'"+$( )&2( $*"( %'-%=%-73,( subject. There are many examples of these kinds of studies. For instance, studies on pathogenesis could potentially involve invasive procedures such as the use of an arterial or venous line for a PET scan.3 Also, lumbar 17'#$72"!/(%'(0*%#*(3(!1%'3,($31(%!(7!"-($&(#&,,"#$(#"2".2&!1%'3,(i7%-/(%!(3( procedure which is more than minimally risky, and is commonly used for research on patients with Alzheimer’s disease.4(Y3'<(@*3!"(:($2%3,!(&) (-274!( and placebo controls usually involve higher than minimal risk as well. An "H351,"(&) ($*%!(8%'-(&) (2"!"32#*(%!(3(@*3!"(:(!3)"$<($2%3,(&) (3(#*&,%'"!$"23!"( inhibitor.5 Along with the higher level of risk of these procedures, there %!(3(!$2&'4(,%8",%*&&-($*3$(-"5"'$%3(13$%"'$!(0%,,('&$(-"2%="(-%2"#$(."'"+$( from many of these studies for two reasons. First, the aim of many of these studies might only be to identify important biomarkers, genes, or proteins %'=&,="-(%'($*"('"72&,&4%#3,(5"#*3'%!5!(&) ($*"!"(%,,'"!!"!>(:'($*%!(!"'!"/( patients in these kinds of studies will most likely not receive any treatment or therapeutic procedure. Second, the majority of patients with Alzheimer’s -%!"3!"(32"(3.&="($*"(34"(&) (!%H$<6+="/(3'-(53'<(&) ($*"5(32"("="'(&,-"2>( :$(%!(,%8",<($*3$/("="'(%) ($*"<(0"2"("'2&,,"-(%'(3(!$7-<($&($"!$($*"(")+#3#<(&) ( 3(4%="'($2"3$5"'$/($*"<(0&7,-('&$(!$3<(3,%="(,&'4("'&74*($&(-%2"#$,<(."'"+$( )2&5($*"(3112&="-(-274(&2(12&#"-72">(F&2("H351,"/(@*3!"(:($2%3,!(&) (-274!( can take many years before they are out on the market. This paper will focus on the procedural ethics surrounding how the decision of enrollment should be made for this third class of research, since 32

Princeton Bioethics Conference

%$(23%!"!($*"(5&!$(!3,%"'$("$*%#3,(12&.,"5!>(:(0%,,(."4%'(.<(12"!"'$%'4($*2""( normative positions which can be taken with regard to the third class of 2"!"32#*>(G)$"2(3247%'4(%'()3=&2(&) ($*"($*%2-(1&!%$%&'/(:(3--2"!!(!&5"(&) ( the practical challenges to the implementation of RADs. Normative Positions There are three main normative positions concerning the enrollment &) (-"5"'$%3(13$%"'$!(%'($*"!"(!$7-%"!n(J[O(-"5"'$%3(13$%"'$!(!*&7,-('"="2( ."("'2&,,"-(%'($*"!"(!$7-%"!/(JLO(12&H<(#&'!"'$()2&5(3'(ABY(%!(!7)+#%"'$( )&2("'2&,,5"'$(%'($*"!"(!$7-%"!/(3'-(JeO(12&H<(#&'!"'$(%!('&$(!7)+#%"'$/(.<( itself, for enrollment and other factors should also be considered, includ%'4(SGB!>(D,$%53$",</(:(3247"(%'()3=&2(&) ($*"($*%2-('&253$%="(1&!%$%&'/(3'-( claim that we need to take RADs more seriously as a possible means of 2"!&,=%'4($*"!"(-%,"553!>(:(3,!&(12"!"'$(!&5"(!$23$"4%"!($*3$(#3'(13="($*"( way for more effective and prevalent usage of RADs. ( G##&2-%'4($&($*"(+2!$(1&!%$%&'/($*"($*%2-(#,3!!(&) (2"!"32#*(!*&7,-( not be permitted on patients with dementia under any circumstances. This viewpoint is primarily based on the “precautionary principle” which states $*3$(%$(%!(."$$"2($&("22(&'($*"(!%-"(&) (42"3$"2(!3)"$<>(:$(%!(3,!&(42&7'-"-(%'( a strong sense of concern for the protection of vulnerable populations, a category under which dementia patients are subsumed according to the U.S. Code of Federal Regulations. Under the regulations, dementia patients are labeled “mentally disabled persons.”2 This position is problematic because, in the name of protection, it actually undermines patient autonomy and yields a viewpoint that is unnecessarily paternalistic. For example, there are many competent individuals who would willingly want to participate in 5&2"($*3'(5%'%53,,<(2%!8<(2"!"32#*(0%$*&7$($*"(12&!1"#$(&) (-%2"#$(."'"+$/( and would want to do so if they were to become incompetent later on in their lives. There are many reasons one might have for agreeing to such research, including altruism and an optimistic attitude concerning the ad=3'#"5"'$(&) (!#%"'#">(_'"(5%4*$("="'(=%"0(132$%#%13$%&'(%'(!7#*(2"!"32#*( 3!(3(5&23,(-7$<(3##&2-%'4($&(&'"b!(2",%4%&7!(&2(1*%,&!&1*%#3,(.",%")!>(:'($*%!( !"'!"/(3.%-%'4(!$2%#$,<(.<($*"(+2!$('&253$%="(1&!%$%&'(0&7,-("'$3%,(!%$73$%&'!( in which incompetent individuals would be barred from participation in such research even if they would have elected to participate had they been competent. Moreover, if such research is not allowed to continue under any possible circumstances, then it might be nearly impossible to develop effective drugs to treat diseases like Alzheimer’s. As a result, this position does not completely respect the autonomy of the individual subject nor does it allow for compelling societal interests to be pursued at all. 33

The Princeton Journal of Bioethics

( X*"(!"#&'-(1&!%$%&'(!$3$"!($*3$(12&H<(#&'!"'$(%!(!7)+#%"'$()&2("'rollment in these studies, without the necessity of considering any other #2%$"2%3>(X*"(3-=3'$34"(&) ($*%!(1&!%$%&'(%!($*3$(%$((!%4'%+#3'$,<(!%51,%+"!( the situation in two ways. First, it treats the research context no different $*3'($*"($2"3$5"'$(#&'$"H$>(@2&H<(#&'!"'$(%!(7!73,,<(!7)+#%"'$(%'(#3!"!(&) ( medical treatment. Second, this position avoids the vague and ambiguous #&'#"1$(&) (P5%'%53,(2%!8Q(3,$&4"$*"2>(A%'#"(12&H<(%!(#&'!"'$(%!(!7)+#%"'$/( regardless of the level of risk, setting a threshold of “minimal risk” is not '""-"-(3'-(3,,($*"(32475"'$!(%'()3=&2(&)/(3'-(343%'!$/(=32<%'4(-"+'%$%&'!( 32"($*2&0'(3!%-">(_'"(5%4*$(3,!&($*%'8($*3$(3'(ABY(!*&7,-(-"#%-"(&'($*"( .3!%!(&) ($*"(!35"(!$3'-32-!($*3$(32"(71*",-(%'($*"($2"3$5"'$(#&'$"H$>(:'( &$*"2(0&2-!/($*"(ABY(57!$(+2!$(,&&8($&(3'(SGB/($*"'(7!"(P!7.!$%$7$"-( judgment”, and lastly decide on the basis of “best interests.” This is known as the traditional hierarchical model of surrogate decision making and is the dominant model used today.\ Although the simplicity created by the second position has advantages, with increasing simplicity, important ethical concerns are shrouded. As a result, there are many problems with this position. First, research studies on the effectiveness of proxy consent show that SDMs are usually inaccurate in their perception of what the patient, on whose behalf they are deciding, actually wants.] Studies also show that SDMs often do not place much emphasis on the risks involved in research and have a tendency to assume the research is safe.U(:'($*%!(!"'!"/(5"2",<(-")"'-%'4($*%!(1&!%$%&'( on the basis of current practices in the treatment context ignores the fact that there may even be ethical problems with allowing proxy consent as 3(!7)+#%"'$(#&'-%$%&'()&2(#&'!"'$($&($2"3$5"'$>(A"#&'-/($*"2"(32"(5&23,,<( relevant differences between the treatment and research context that warrant attention. The main difference is apparent when we talk about the third #,3!!(&) (2"!"32#*>(:'(!7#*(2"!"32#*/($*"2"(%!('&(12&!1"#$(&) (-%2"#$(."'"+$>(:'( the treatment context, there is, like the research context, a certain degree of probable risk involved. However, there is always some prospect of direct ."'"+$(%'($*"(#3!"(&) ($2"3$5"'$/(.<(-"+'%$%&'>((The fact that a proxy is allowed to consent to most forms of risky treatment should not automatically allow a proxy to consent to risky research when there is no possibility of ."'"+$> ( :) (&'"(!711&2$!($*"(!"#&'-('&253$%="(1&!%$%&'/(&'"(5%4*$($2<($&(17!*( .3#8(343%'!$($*%!(&.K"#$%&'(.<(#,3%5%'4($*3$(%$(-"+'"!(P."'"+$Q(%'($&&('322&0( 3(!"'!">(_'"(5%4*$(!744"!$($*3$(P."'"+$Q(#3'(."(5&2"(.2&3-,<(#&'!$27"-( !&(3!($&(%'#,7-"('&$%&'!(&) (P3,$27%!$%#(."'"+$Q(&2(P)35%,%3,(."'"+$>Q(X*"( #&'#"1$(&) (P)35%,%3,(."'"+$Q(%!(42&7'-"-(&'(2"#"'$(!#%"'$%+#("=%-"'#"($*3$( 34

Princeton Bioethics Conference

suggests that Alzheimer’s disease and many other dementias are genetically linked.W Thus, in some cultures which place a high level of value on the family over the individual, an individual may want to participate in such 2"!"32#*(."#37!"(%$(."'"+$!($*"()35%,<(3!(3(0*&,">(:) (0"(3!!75"($*3$(P."!$( interests” can be broadened to include these concepts, then there is some 12&!1"#$(&) (-%2"#$(."'"+$(%'($*"(.2&3-"2(!"'!"()&2($*%!(#,3!!(&) (2"!"32#*/(3'-( one might then argue that there are no other morally relevant differences between the treatment and research context. Therefore, one can make the argument that the ethical permissibility of proxy consent to treatment can be neatly transferred to the research context. There are many counter-arguments that can be made against this -")"'!">(F%2!$/("="'(%'($*"($2"3$5"'$(#&'$"H$/($*"(0&2-(P."'"+$Q(%!(7!"-(%'( more of a narrow, medical sense. The same standards should be upheld )&2($*"('&$%&'(&) (P."'"+$Q(%'(.&$*($*"($2"3$5"'$(3'-(2"!"32#*(#&'$"H$>(:$( !""5!(*%4*,<(%223$%&'3,($&(#,3%5($*3$(P."'"+$Q(!*&7,-(."(7'-"2!$&&-(5&2"( broadly in the research context, when it is not understood in such a sense in the treatment context, especially when one is trying to point out the moral !35"'"!!(&) (.&$*(#&'$"H$!>(A"#&'-/(:(!""($*"('&$%&'(&) (3(.2&3-"2(7'-"2standing of “best interests” as a misguided attempt to fuse the concepts of “substituted judgment” and “best interests” in order to gain the advantages of both. Daniel Sulmasy’s concept of “substituted interests” is an example of this, at least in the treatment context.10(_'"(57!$(a7"!$%&'(0*"$*"2(&2( '&$($*"2"(%!(3'<(2&&5()&2(3()7!"-(#&'#"1$/(3'-(:(0%,,('&0(#2%$%#3,,<("H35%'"( this endeavor. So, what do the proponents of the second normative position hope $&(3#*%"="(0%$*(3(.2&3-"2(7'-"2!$3'-%'4(&) (P."'"+$/Q(&$*"2($*3'(3247%'4( )&2($*"(5&23,(!35"'"!!(&) ($*"($0&(#&'$"H$!c(:($*%'8($*3$(3(.2&3-"2(7'-"2!$3'-%'4(&) (P."'"+$Q(3,!&(3,,&0!(5&2"(2"!"32#*($&(."("$*%#3,,<(1"25%!!%.,"( under the second position. For instance, if a narrow understanding of P."'"+$Q(%!("51,&<"-(/($*"'(%$(0&7,-(."(&.=%&7!($*3$($*"($*%2-(#,3!!(&) ( research is never in the “best interests” of the patient. As a result, an SDM could only allow such research via a substituted judgment. A substituted judgment, at least in this class of research, would probably have to be some kind of written document with detailed preferences regarding the research. Although states differ with respect to the amount of evidence required for a substituted judgment, we must remember that this is a discussion of normative viewpoints, and we are now considering what should be the case, not what actually is the case. Since a substituted judgment would have to be so detailed, at least at this point in time, most people would not have written such documents, and a substituted judgment would probably be 35

The Princeton Journal of Bioethics

off limits for a surrogate decision-maker. Given a narrow understanding of P."'"+$/Q(="2<(,%$$,"(2"!"32#*(0&7,-(."(3,,&0"->(G(.2&3-"2(7'-"2!$3'-%'4/( 0*%#*()7!"!($*"(!7.K"#$%="(#&51&'"'$(&) (3(!7.!$%$7$"-(K7-45"'$(J0*%#*( 3,,&0!()&2($*"(.2&3-"2(7'-"2!$3'-%'4(%'($*"(+2!$(1,3#"O(0%$*($*"(&.K"#$%="( #&51&'"'$(&) (P."!$(%'$"2"!$!Q(J0*%#*(3,,&0!(5&2"(2"!"32#*($&($38"(1,3#"( when there is not any detailed, written evidence) is essential for the second normative position to have some teeth. ( :!(!7#*(3()7!%&'(1&!!%.,"c(E3'(0"(538"(2&&5()&2(3(*<.2%-(#&'#"1$( $*3$(<%",-!($*"(3-=3'$34"!(&) (.&$*(3'-(3,,&0!(2"!"32#*($&(#&'$%'7"c(:(-&'b$( think so. As an SDM, one only resorts to “best interests” when there is not enough evidence for a substituted judgment. Assuming that there is not enough such evidence in a particular case, then how can there be enough "=%-"'#"()&2(3(.2&3-"2(7'-"2!$3'-%'4(&) (P."'"+$Qc(:'(&$*"2(0&2-!/($*"( broadening &) (P."'"+$/Q(0*%#*("'$3%,!($*"(3--%$%&'(&) (3(!7.K"#$%="(#&51&'"'$/( 2"a7%2"!("=%-"'#"(3!(0",,>(:(0&7,-(3247"($*3$(($*"(!35"(35&7'$(&) ("=%-"'#"( as in a substituted judgment should be required. For example, let’s take a ,&&8(3$($*"('&$%&'(&) (P3,$27%!$%#(."'"+$>Q(:) ($*"2"(03!('&("=%-"'#"(2"a7%2"-( for an SDM to enroll a patient in the third class of research on the basis of P3,$27%!$%#(."'"+$/Q(&2(,"!!("=%-"'#"($*3'()&2(3(!7.!$%$7$"-(K7-45"'$/($*"'( an SDM could justify this by merely mentioning that the patient was an altruistic person throughout his or her life therefore the patient would have wanted to enroll to help advance knowledge which could potentially help &$*"2!>(?%$*&7$(!7)+#%"'$("=%-"'#"/(*&0"="2/(P3,$27%!5Q(#3'(."(%'$"212"$"-( in many ways, and it is not enough to justify enrollment. For instance, one 5%4*$( ."( 3,$27%!$%#/( .7$( '&$( $27!$( $*"( !#%"'$%+#( "'$"212%!"( 3!( 3( ,"4%$%53$"( means of helping other people. Also, one might be altruistic in the sense that one is willing to help others 1('".5'$%,<$&#1%&-$.&$@#,#7'$'.$.,#+#*2, which by no means implies that one is willing to help others at risk to oneself or even at greater than “minimal” risk to oneself. Therefore, based on these 35.%47%$%"!( %'( %'$"212"$3$%&'/( :( 3247"( $*3$( $*"( .2&3-"'%'4( &) ( P."'"+$Q( !*&7,-(2"a7%2"($*"(!35"(35&7'$(&) ("=%-"'#"(3!(3(!7.!$%$7$"-(K7-45"'$>(:) ( $*%!(12"5%!"(%!(3##"1$"-/($*"'($*"()&,,&0%'4(#&'#,7!%&'("'!7"!n(:) ($*"2"(%!( not enough evidence for a substituted judgment, then there is not enough "=%-"'#"()&2(3(.2&3-"'"-(P."!$(%'$"2"!$!/Q(3'-(+'3,,<(&'"(57!$(2"!&2$($&( a narrow sense of “best interests.” This leaves us with the same problem that the hybrid concept was introduced to solve; namely, that very little, if any, research would be allowed. ( :(!711&2$($*"($*%2-(1&!%$%&'/($*3$(12&H<(#&'!"'$(%!('&$(3(!7)+#%"'$( condition, by itself, for the enrollment of dementia patients in the third class &) (2"!"32#*>(A1"#%+#3,,</(:(0&7,-(342""(0%$*(5&!$(1&,%#<(2"#&55"'-3$%&'!( 36

Princeton Bioethics Conference

which state that an RAD is a necessary condition for enrollment, and that a proxy should be available to monitor participation in case the patient needs to be pulled out of the research due to some complication.4,11-12 An RAD would be the best option to promote the autonomy of the dementia patient and would, at the same time, allow this class of research to continue, unlike $*"(+2!$('&253$%="(1&!%$%&'>(X*"(53%'(&.K"#$%&'!($&($*"($*%2-('&253$%="( 1&!%$%&'(#"'$"2(32&7'-($*"(123#$%#3,(%51,"5"'$3$%&'(&) (SGB!>(:(0%,,('&0( provide some further directions for research and policy-making in order to actualize the third normative position and to overcome these practical barriers. Future Directions First, we must opt for legal recognition and regulation of RADs to ensure that they are implemented and acted upon with binding force, and to prevent their misuse or abuse.W Currently, there are no laws recognizing the use of RADs and few states have detailed laws on surrogate consent $&(2"!"32#*>(_',<($0&(!$3$"!/(E3,%)&2'%3(3'-(;%24%'%3("H1,%#%$,<(1,3#"(,%5%$!( &'(!722&43$"(#&'!"'$>(G##&2-%'4($&($*"(_)+#"()&2(9753'(S"!"32#*(@2&$"#$%&'!(J_9S@O/(%'(!$3$"!($*3$(-&('&$(*3="(!7#*(,30!/(%$(%!(1"25%!!%.,"($&( analogize from laws regulating proxy consent to treatment.13 Legal reform 57!$(2"i"#$(3'(7'-"2!$3'-%'4(&) ($*"(-%))"2"'#"!(."$0""'(!722&43$"(#&'!"'$( for treatment and surrogate consent for research, which is neglected by the _9S@(2"47,3$%&'!/(3'-(!*&7,-(2"#&4'%f"($*"(7$%,%$<(&) (SGB!(%'(12&$"#$%'4( patient autonomy while at the same time ensuring their appropriate regulation. Second, it is essential to focus research efforts on testing the empirical effectiveness of RADs in practice. Scant studies have been performed, and more research in this area is needed. Such research can improve our understanding of the factors that contribute to potential practical problems 0%$*(SGB!/(3'-(3$$"'$%&'(#3'(."()&#7!"-(&'($*"!"(!1"#%+#(32"3!>(_'"(53K&2(!$7-<(&) ("51%2%#3,(")+#3#<(03!(#&'-7#$"-(.<(A$&#8%'4(3'-(#&,,"347"!( %'(0*%#*($*"(")+#3#<(&) (3(2"!"32#*(3-=3'#"(-%2"#$%="(#3,,"-(@GX(J@,3''%'4( Ahead Together) was measured on the basis of enrollment rates, decision ease, and proxy comfort.14 Unfortunately, the results did not differ between the control group and the group which had performed the PAT. However, $*%!(-&"!('&$(2"i"#$($*"()3%,72"(&) (SGB!(%'(4"'"23,/(."#37!"($*"()3%,72"(&) ( patients and proxies to report decision ease was most likely due to the fact that the research in which most of them were invited to participate was not the same kind of high-risk research included in the conversations required for PAT. As a result, this study should foster new and creative ways to think 37

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&) (&.K"#$%="(5"3!72"!()&2(")+#3#<(3'-(!$2&'4"2(!$7-<(-"!%4'>( Finally, we need to address the issue of patient uptake and knowl"-4"(3.&7$(SGB!>(_'"(!$7-<(%'(I7"."#()&7'-($*3$($*"(12"=3,"'#"(23$"(&) ( )&253,(3-=3'#"(-%2"#$%="!()&2(2"!"32#*(03!(]>N^(#&5132"-($&(3(NL>e^(23$"( for informal advance directives for health care.15 Another study involving L/e][(3-7,$(%'13$%"'$!(3$($*"(l:9(E,%'%#3,(E"'$"2()&7'-($*3$(&',<([[^(&) ( patients had completed research advance directives over a four month period.[\ Strategic efforts to increase patient knowledge and uptake of RADs should be pursued. Furthermore, it is necessary to think about how to design RAD forms. The prevalence of a “therapeutic misconception,” in 0*%#*(13$%"'$!(%512&1"2,<(.",%"="($*3$(2"!"32#*(0%,,(."'"+$($*"5/(%!(3(53K&2( -%)+#7,$<(0%$*($*"(-"!%4'(&) (SGB()&25!>[](_'"(&) ($*"(53%'(32475"'$!( against the proposal to combine research and treatment into one advance directive form is that this would exacerbate the “therapeutic misconcep$%&'Q(%'($*"(5%'-!(&) (13$%"'$!>(X*"2"(32"('75"2&7!(123#$%#3,(-%)+#7,$%"!( associated with the design of these forms, and empirical studies pertaining to various design proposals are also needed in this area. RADs should be recognized as a necessary condition for the enroll5"'$(&) (-"5"'$%3(13$%"'$!(%'(*%4*62%!8('&6."'"+$(2"!"32#*(%'(&2-"2($&(12&tect the autonomy of these patients. A push for RADs might also result in more discussion between patients, providers, and their surrogate decision makers, about decisions at end-of-life, and in cases of incompetency. While there are practical challenges to the large-scale implementation of RADs, they are not insurmountable. A sound ethical policy should address these issues and future research should make RADs a top priority. References Alzheimer’s Association. “2011 Alzheimer’s Facts and Figures.” Alzheimer’s & Dementia ]>L(JLM[[On([6\e> 2 Code of Federal Regulations. U.S. Department of Health and Human A"2=%#"!/([Z(p7,<(LM[M>(?".>([N(_#$>(LM[[>(s*$$1ngg000>**!>4&=g &*21g*753'!7.K"#$!g47%-3'#"gNZ#)2N\>*$5,t> 3 (q%5/(A#&$$(k>9>/(@37,(A>(G11",.375/(B%,%1(;>(p"!$"/(3'-(p3!&'(X>(_,%'>( “Proxy and Surrogate Consent in Geriatric Neuropsychiatric Research: Update and Recommendations.” American Journal of Psychiatry [\[>Z(JLMMNOn(]W]6UM\> 4 (B7''/(`3723(C>/(3'-(A3*3'3(Y%!23>(PS"!"32#*(d$*%#!(:!!7"!(%'(V"2%3$2%#( Psychiatry.” Psychiatric Clinics of North America eL>L(JLMMWOn(eWZ6N[[> 5 Beresford, H. Richard. Ethical Issues in Dementia. Web. 1

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Berger, Jeffrey T., Evan G. DeRenzo, and Jack Schwartz. “Surrogate Decision Making: Reconciling Ethical Theory and Clinical Practice.” Annals of Internal Medicine>([NW>[(JLMMUOn(NU6Ze> ] (A*3,&0%$f/(B3=%-(:>/(d,%f3."$*(V322"$$6Y3<"2/(3'-(B3=%-(?"'-,"2>(PX*"( Accuracy of Surrogate Decision Makers.” Archives of Internal Medicine. [\\(JLMM\On(NWe6NW]> U Sugarman, Jeremy, Carole Cain, Roberta Wallace, and Kathleen A. Welsh-Bohmer. “How Proxies Make Decisions about Research for Patients with Alzheimer’s Disease.” Journal of the American Geri3$2%#!(A&#%"$<>(NW(JLMM[On([[[M6[[[W> W Pierce, Robin. “A Changing Landscape for Advance Directives in Dementia Research.” Social Science & Medicine ]M(JLM[MOn(\Le6eM> 10 (A7,53!</(B3'%",(@>/(3'-(`&%!(A'<-"2>(PA7.!$%$7$"-(:'$"2"!$!(3'-(C"!$( p7-45"'$!n(G'(:'$"423$"-(Y&-",(&) (A722&43$"(B"#%!%&'(Y38%'4>Q( JAMA: The Journal of the American Medical Association eMN>[](JLM[MOn( [WN\6WN]> 11 National Bioethics Advisory Commission. Research Involving Persons with Mental Disorders That May Affect Decisionmaking Capacity. S"1>([WWU> 12 (E3'3-%3'(:'!$%$7$"!(&) (9"3,$*(S"!"32#*/(l3$723,(A#%"'#"!(3'-(d'gineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada. Ethical Conduct for Research Involving Humans. Rep. 2010. 13 Saks, Elyn R., M. Litt, Laura B. Dunn, Jessica Wimer, Michael Gonzales, and Scott Kim. “Proxy Consent to Research: The Legal Landscape.” Yale Journal of Healthy Policy, Law, and Ethics U>[(JLMMUOn( e]6WL> 14 Stocking, Carol B., Gavin W. Hougham, Deborah D. Danner, Marian B. Patterson, Peter J. Whitehouse, and Greg A. Sachs. “Empirical Assessment of a Research Advance Directive for Persons with Dementia and Their Proxies.” Journal of the American Geriatrics Society. ZZ(JLMM]On[\MW6[\[L> 15 Bravo, Gina, Marie-France Dubois, and Mariane Paquet. “Advance Directives for Health Care and Research: Prevalence and Correlates.” Alzheimer Disease and Associated Disorders. [](JLMMeOn(L[Z6LLL> [\ Muthappan, Palaniappan, Heidi Forster, and David Wendler. “Research G-=3'#"(B%2"#$%="!n(@2&$"#$%&'(&2(_.!$3#,"cQ(American Journal of Psychiatry>([\L(JLMMZOn(LeUW6LeW[> [] Appelbaum, Paul S., Loren H. Roth, and Charles Lidz. “The Therapeu$%#(Y%!#&'#"1$%&'n(S"!"32#*(:')&25"-(E&'!"'$(%'(@!<#*%3$2%#(S"search.” International Journal of Law and Psychiatry. Z(J[WULOn(e[W6eLW> \

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Toward a More Open Future for All: Making a Case for Positive Eugenics Harry Chalmers ’12 Centre College I. Introduction

“E

ugenics” is a notoriously dangerous word in bioethical discourse. For many, the word evokes thoughts of coercive, violent, and disastrous 20th-century attempts to genetically “purify” the human species. Examples of such attempts are only too easy to recall, from the extermination of hundreds of thousands of mentally and physically challenged individuals in Nazi concentration camps to the forced sterilization of the mentally ill, or “feeble-minded,” in the United States J?3,$"2!(LMMO>(:'-""-/(%'(-%!#7!!%&'!(&) (.%&"$*%#3,(%!!7"!/(&'"(!&5"$%5"!( sees association with eugenics, or even merely potential association with eugenics, posed as an argument in itself that a certain policy or practice is immoral. As biomedical technology advances, however, and the potential for using genetic technologies to advance public health and individual 0",,6."%'4(42&0!(#,"32"2/(%$(."#&5"!(%'#2"3!%'4,<(-%)+#7,$($&(-%!5%!!(&2( ignore the notion that eugenics could be of extraordinary value to hu53'%$<>(A%'#"($*"(-%!#&="2<(%'([WUe(&) ($*"(4"'"($*3$(#37!"!(97'$%'4$&'b!( disease, to take only one example, the scope and effectiveness of genetic $"!$%'4(*3!(42&0'($&(%'#,7-"('75"2&7!(&$*"2(-%!&2-"2!>(:$(*3!(.""'( predicted that, by 2020, there will be genetic tests available for obesity, !#*%f&1*2"'%3/(3$$"'$%&'(-"+#%$(*<1"23#$%=%$<(-%!&2-"2/(3!$*53/(-<!,"H%3/( 3'-(-%3."$"!(JI73%-(LNe6LNNO>(G--%$%&'3,,</(4"'"$%#(5"$*&-!(&) ($2"3$%'4( such conditions are now being explored, such as the transfer of genes to human fetuses in order to prevent genetic diseases from arising JS"!'%8( L\]O>(:$(%!(0%$*(!7#*(1&!!%.%,%$%"!(%'(5%'-($*3$(.%&"$*%#%!$(p&'3$*3'(V,&="2(02%$"!/(P:) (0"(-"#%-"(&'(3(1&!%$%="(o4"'"$%#y(12&42355"($&(#*3'4"(&72( nature, this will be a central moment in our history, and the transforma$%&'(5%4*$(."(."'"+#%3,($&(3(-"42""(0"(#3'(!#32#",<(%534%'"Q(J]\UO>( Some key questions raised by the history of and recent develop5"'$!(%'("74"'%#!(5%4*$(."(1&!"-(3!()&,,&0!n(:!("74"'%#!(3,03<!(5&23,,<( 40

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02&'4c(_2(#3'(%$(."(5&23,,<(1"25%!!%.,"v&2/(%'-""-/(5&23,,<(&.,%43$&2<c( X*"(-%)+#7,$<(&) (3'!0"2%'4(!7#*(a7"!$%&'!(."#&5"!(31132"'$(0*"'(0"( 2"i"#$(&'($*"(=32%&7!()&25!(&) ("74"'%#!v)2&5(!<!$"53$%#("H$"25%'3tion and forced sterilization, which are quite clearly morally wrong, to !$%,,6-"=",&1%'4(3'-(!""5%'4,<(5&2"(-&#%,"(5"$*&-!($*3$(32"(P#&'+'"-( $&($*"(,3./Q(!&($&(!1"38(J">4>/(3,$"2%'4($*"(4"'"$%#(#&51&!%$%&'(&) (3()"$7!O>( :'(&2-"2($&(3=&%-($*"(#&')7!%&'(&) ("H$23'"&7!(5&23,(#&'!%-"23$%&'!/(!7#*( 3!(4"'&#%-"(3'-(#&"2#%&'/(:(0%,,(,%5%$(5<(-%!#7!!%&'($&()&25!(&) ("74"'%#!( $*3$(#"'$"2(&'("5.2<&!v$*3$(%!/(&'(5"$*&-!($*3$(4"'"$%#3,,<($"!$/(5&-%)</( or selectively implant embryos.1(:'(132$%#7,32/(:(0%,,(7!"(12"6%51,3'$3$%&'( 4"'"$%#(-%34'&!%!(J@VBO(3!($*"(5&-",(&) ("74"'%#!()&2($*%!(-%!#7!!%&'>2 A few remarks on PGD itself are warranted before proceeding )72$*"2>(@VB(%!(3($"#*'%a7"($*3$(."4%'!(0%$*(%'(=%$2&()"2$%,%f3$%&'(J:;FO/(3( procedure wherein eggs are fertilized outside of the uterus, typically in a @"$2%(-%!*>(:'(@VB/(3(#",,(%!($38"'()2&5("3#*(&) ($*"(-"=",&1%'4("5.2<&!( and genetically tested, thereby revealing the embryosâ&#x20AC;&#x2122; dispositions, or lack thereof, to certain medical conditions. The embryos may then be either implanted into the uterus or discarded on the basis of their genetic 12&+,"!>(@VB('&0($"!$!(&="2([MM(4"'"$%#(#&'-%$%&'!(JP@2"6%51,3'$3$%&'( V"'"$%#(B%34'&!%!(o@VByQO>(:()&#7!($*%!(-%!#7!!%&'(&'(@VB(."#37!"(%$( is an effective model for illustrating the principles, rather than the forms, of eugenics. After all, in selecting embryos to implant on the basis of PGD, people make decisions about the genetic composition of future %'-%=%-73,!v-"#%!%&'!(0*%#*/(%) (53-"(.<(3(!7)+#%"'$('75."2(&) (1"&1,"/( have implications for the genetic composition of populations. The essential elements of eugenics are thus present in PGD, while there are none of the extraneous moral considerations mentioned above. _'"(+'3,(#,32%+#3$%&'(%!('""-"-(.")&2"(12&#""-%'4($&(5<(32475"'$>(A1"#%+#3,,</(%$(%!(%51&2$3'$($&('&$"($*"(&)$"'("51*3!%f"-(-%!$%'#tion between positive and negative eugenics. The goal of negative eugenics is to reduce the incidence of undesired genes, conditions, and quali$%"!>(:'($*"(#3!"(&) (@VB/('"43$%="("74"'%#!(%!(53'%)"!$"-(%'(#*&&!%'4('&$( $&(%51,3'$(#"2$3%'("5.2<&!(."#37!"($*"<(#&'$3%'(-")"#$%="(4"'"!v!3</( 4"'"!()&2(X3<6A3#*!(-%!"3!"(&2(#<!$%#(+.2&!%!>(@&!%$%="("74"'%#!/(%'(#&'trast, aims to increase the level of desired genes and traits. The practice [( 2

X&(3=&%-(<"$(3'&$*"2(1&$"'$%3,(5&23,(#&51,%#3$%&'/(:(0%,,(3,!&(3!!75"($*3$(%$(%!($*"(J1&$"'$%3,O(132"'$!v23$*"2($*3'/(!3</(3(4&="2'5"'$( &2(5"-%#3,("!$3.,%!*5"'$v0*&(#*&&!"(0*3$(%!(3'-(%!('&$(-&'"($&($*"("5.2<&!>( An upshot of the use of PGD as a model is that this paperâ&#x20AC;&#x2122;s conclusions, if sound, apply at least to embryo-based forms of eugenics. Whether they apply to other forms of eugenics, however, is beyond the scope of the paper.

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of positive eugenics through PGD would entail selecting and implanting embryos “not to treat or prevent a disease but to achieve another result, such as increased height, intelligence, disease resistance, or musical abil%$<Q(JS"!'%8(L\]O>( :$(%!(!&5"$%5"!(3!!75"-($*3$('"43$%="("74"'%#!/(."%'4(#&'#"2'"-( !&,",<(0%$*($*"(12"="'$%&'(&) (!7))"2%'4/(%!(5&23,,<(&.,%43$&2<(J&2(3$(,"3!$( permissible), whereas positive eugenics, with its dangerous focus on "'*3'#"5"'$/(%!(5&23,,<(%51"25%!!%.,"(JV,&="2(]]NO>(B"!1%$"(%$!(%'%$%3,( attractiveness, however, the alleged moral distinction between positive and negative eugenics does not hold. Like negative eugenics, positive eugenics is morally obligatory. Such a claim, of course, is quite strong. :$("'$3%,!/()&2(&'"($*%'4/($*3$(%$(%!(5&23,,<(02&'4('&$($&(123#$%#"(1&!%$%="( eugenics when one has the opportunity to do so. Yet the conclusion that positive eugenics is morally obligatory follows from defensible claims. :'($*%!(131"2(:(0%,,(3247"/(+2!$/($*3$('"43$%="("74"'%#!(%!(5&23,,<( &.,%43$&2<>(A"#&'-/(:(0%,,(!*&0($*3$($*"2"(%!('&(5&23,,<(2","=3'$(-%!$%'#$%&'(."$0""'('"43$%="(3'-(1&!%$%="("74"'%#!>(F%'3,,</(:(0%,,(3'!0"2(3()"0( of the most prominent objections to both positive and negative eugen%#!>(V%="'/($*"'/($*3$(J[O('"43$%="("74"'%#!(%!(5&23,,<(&.,%43$&2</(JLO($*"2"( is no morally relevant distinction between negative and positive eugen%#!/(3'-(JeO($*"(&.K"#$%&'!($&(1&!%$%="(3'-('"43$%="("74"'%#!(32"(0"38/(%$( follows that we are morally obligated to practice some form of positive "74"'%#!v3$($*"(="2<(,"3!$/("5.2<&6.3!"-()&25!> II. Negative Eugenics is Morally Obligatory a. The Open Future There has arisen in recent bioethical discourse the notion of a child’s “right to an open future,” or the right to be given a future in which he or she has autonomy JB3=%!(UO>(?"(53<(."4%'($&(!""(*&0( practicing negative eugenics is morally obligatory by examining, as well 3!(!,%4*$,<(5&-%)<%'4/($*%!('&$%&'(&) ($*"(2%4*$($&(3'(&1"'()7$72">(X*"(+2!$( 5&-%+#3$%&'(:(0%!*($&(538"(%!($&(#&'#"%="(&) ($*"(&1"'()7$72"('&$(3!(3( 2%4*$/(.7$(3!(3'(&.,%43$%&'v$*3$(%!/(3'(&.,%43$%&'(&'(7!($&(12&=%-"(J$&( "5.2<&!/(#*%,-2"'/(&2(3'<(&$*"2(2","=3'$("'$%$<O(3'(&1"'()7$72">(A"#&'-/(:( 12&1&!"(3(.2&3-"2(-"+'%$%&'(&) (P&1"'()7$72"Q(3!($*"(."!$(1&!!%.,"()7$72"( for an individual, rather than merely a future that ensures his or her having autonomy. 42

Princeton Bioethics Conference

:$(%!(0&2$*('&$%'4($*3$/(0*"'(-"+'"-(%'($*%!(5&2"(4"'"23,(03</( the open future seems quite uncontroversially to imply some sort of 5&23,(&.,%43$%&'>(C<(-"+'%$%&'/($2<%'4($&(4%="(%'-%=%-73,!($*"(."!$(1&!sible future is, at the very least, a morally praiseworthy endeavor; if this were not so, the word “best” would seem to lack moral content. Further, one may make a case that, if there are no reasons not to perform a morally praiseworthy act, the act is a moral obligation.3 Thus, it seems safe to say that, like the vague notion of “trying to make a better world,” the =347"('&$%&'(&) ($2<%'4($&(4%="(%'-%=%-73,!(3'(&1"'()7$72"v3!!75%'4/( 343%'/($*3$($*"("))&2$(-&"!('&$(%'=&,="(3'<(#&7'$"2=3%,%'4(#&!$!()&2(7!v%!( a moral obligation. Admittedly, conceiving of the open future as the best possible future for an individual is vague, doing virtually nothing to suggest for &2(343%'!$(#&72!"!(&) (3#$%&'>(X&(!1"#%)</($*"'/(:(12&1&!"($*3$($*"(&1"'( )7$72"(*3!(.&$*(."'"+#"'#"(3'-(37$&'&5</($*"($0&(8"<(12%'#%1,"!(&) ( bioethics, as its foundations. That is, giving an individual an open future 5"3'!(-&%'4(0*3$(0"(#3'($&(53H%5%f"(."'"+#"'#"(3'-(37$&'&5<(%'(*%!( or her future. C<(P."'"+#"'#"Q(:(5"3'($*"(7$%,%$32%3'(%-"3,(&) ($*"(12"="'$%&'( of harm or suffering and the promotion of well-being.4 John Stuart Mill, perhaps the primary historical exponent of utilitarianism, explains the 12%'#%1,"(&) (."'"+#"'#"(3!()&,,&0!n((PoGy#$%&'!(32"(2%4*$(%'(12&1&2$%&'( as they tend to promote happiness; wrong as they tend to produce the reverse of happiness. By happiness is intended pleasure and the absence &) (13%'R(.<(7'*311%'"!!/(13%'(3'-($*"(12%=3$%&'(&) (1,"3!72"Q(JWWO>( C<(P37$&'&5<Q(:(5"3'(3'(%'-%=%-73,b!(3.%,%$<(3'-(2%4*$(&) (!",)6 determination. According to the principle of autonomy, people should be allowed to make their own decisions, as long as their decisions do not 3-="2!",<(3))"#$(&$*"2!b()2""-&5($&(3#$>(G##&2-%'4($&(:553'7",(q3'$/( the most important defender of the value of autonomy, the imperative to respect others’ autonomy stems from the intrinsic value of persons: Pl&0(:(!3<($*3$($*"(*753'(."%'4(3'-(%'(4"'"23,("="2<(23$%&'3,(."%'4( exists as an end in itself, not merely as a means to be used by this or that 3 The principle invoked here is similar to a point famously made by Peter Singer: “[I]f it is in our power to prevent something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

The Princeton Journal of Bioethics

0%,,(3$(%$!(-%!#2"$%&'jQ(Je]R("51*3!%!(&2%4%'3,O>(q3'$(!#*&,32(E*2%!$%'"( Korsgaard explains that respecting autonomy entails “strong injunctions against coercion and deception, since these involve attempts to take oth"2(1"&1,"b!(-"#%!%&'!(&7$(&) ($*"%2(&0'(*3'-!jQ(JHH%%O>(?*%,"($*"(#,3!!%#3,( Kantian ethic focuses primarily on not violating others’ autonomy, more modern conceptions of autonomy are broader, allowing that autonomy is not a strict designation, but a scale. That is, some individuals can be more or less autonomous than others based on qualities such as mental competence and physical ability. Autonomy has also come to be generally viewed as a good to be actively maximized where possible, rather than merely not violated. Giving individuals an open future, then, means doing what we #3'($&(53H%5%f"(."'"+#"'#"(3'-(37$&'&5<(%'($*"%2()7$72">(A7#*(3()&257,3$%&'(2"53%'!(a7%$"(3.!$23#$/(*&0"="2>(F&2(3(!1"#%+#(%,,7!$23$%&'(&2( application of the moral obligation to give individuals an open future, we need look no further than pregnant women. When women are pregnant and intend to become mothers, we view them as morally obligated to !$3<(*"3,$*<(J">4>/(.<("3$%'4('7$2%$%&7!()&&-!(3'-('&$($38%'4(*325)7,(!7.stances), at least as far as their circumstances allow, in order to maximize the future individual’s chance of being autonomous, healthy, happy, and '&$(1,347"-(.<("H#"!!%="(&2(7''"#"!!32<(!7))"2%'4>(:) (3(0&53'(!$3<!( healthy during her pregnancy and gives birth to a healthy baby, then she, at least in terms of her pregnancy, has done what she could to give the .3.<(3'(&1"'()7$72">(:) (3(0&53'(#&'!75"!(3,#&*&,("H$"'!%=",<(-72ing her pregnancy, however, and gives birth to a baby with fetal alcohol !<'-2&5"(JFGAO/(0"(2%4*$,<(=%"0(*"2(3#$%&'(3!(5&23,,<(2"12"*"'!%.,">(X*"( stunted growth, facial deformities, brain damage, and resultant cognitive -"+#%$!(J">4>/(1&&2(5"5&2<(3'-(%517,!%="(."*3=%&2O($*3$(2"!7,$()2&5(FGA( will lead to greater suffering and diminished autonomy for the future individual. Thus, the openness of this individual’s future has been greatly diminished. The example of pregnant women is helpful for prefacing a dis#7!!%&'(&) (*&0('"43$%="("74"'%#!(%!(3(5"3'!(&) ()7,+,,%'4(&72(&.,%43$%&'( to give individuals an open future, since, despite a few practical differences, the essential principles of both cases are the same. Before discussing '"43$%="("74"'%#!(-%2"#$,</(*&0"="2/(:(!*&7,-(538"(3'(%51&2$3'$(#,32%+#3$%&'>(:'(-%!#7!!%'4('"43$%="("74"'%#!/(0"(53<(%'3-="2$"'$,<("'$"2$3%'( the notion that there are future individuals with genetic disorders, and 44

Princeton Bioethics Conference

that negative eugenics is a means of improving their futures by removing their disorders. We must be careful to avoid such a characterization of negative eugenics, for, at least under the model of PGD testing, it is inaccurate. Rather than modifying individualsâ&#x20AC;&#x2122; futures, negative eugenics chooses from a pool of potential individuals, based on their futures, 0*&(0%,,(."(.&2'(3'-(."#&5"(3#$73,(%'-%=%-73,!>(:$(%!('&$(3(53$$"2(&) ( 5&-%+#3$%&'/(.7$(!","#$%&'>(E&'!"a7"'$,</(%) (%$(%!($&(."(311,%"-($&('"43$%="("74"'%#!/($*"(5&23,(&.,%43$%&'($&(4%="(%'-%=%-73,!(3'(&1"'()7$72"v3'( &.,%43$%&'($*3$(&!$"'!%.,<()&#7!"!(&'(5&-%+#3$%&'(23$*"2($*3'(!","#$%&'v'""-!($&(."(2")&257,3$"->( :'(&2-"2($&("H1,&2"(%$!(311,%#3.%,%$<($&('"43$%="("74"'%#!/(:('&0( reformulate the moral obligation to give individuals an open future as follows: Whenever we are faced with the choice of bringing one individual of several into existence, we are morally obligated to choose the one with the most open future. While this reformulation may appear ad *&#/(%$()&,,&0!()2&5(0*3$(*3!(.""'(!3%-($*7!()32(3.&7$($*"(&1"'()7$72">(:) ( there is indeed value in having an open future, it would seem that there is more value in a world in which, given the same number of individuals, a higher percentage has an open future. Consequently, insofar as we are morally obligated to do what we can to bring about a world of more value, we are morally obligated to select individuals with the most open future to be born. :(0%,,('&0(&))"2(3'("H351,"($*3$/(0*%,"("H$2"5"/(%,,7!$23$"!(0",,( the moral obligation to select for implantation and birth the individuals J&2/(5&2"(3##723$",</("5.2<&!O(0%$*($*"(5&!$(&1"'()7$72">(:) (0"(0"2"( forced to choose between one embryo with genes for Tay-Sachs dis"3!"v3'("5.2<&($*3$/(%) (!","#$"-()&2(%51,3'$3$%&'(3'-(.%2$*/(0&7,-(!7)fer in virtually constant dependency and physical deterioration from six 5&'$*!(3)$"2(.%2$*/(,%8",<(!72=%=%'4('&(,&'4"2($*3'()&72(<"32!($&$3,v3'-( a healthy embryo, we would be morally obligated to select the healthy embryo for implantation, as it would have a vastly more open future $*3'($*"(&$*"2("5.2<&>(E&'!%-"23$%&'!(&) (."'"+#"'#"(3'-(37$&'&5</( 3'-(1"2*31!(&72(5&23,(%'$7%$%&'(%'(4"'"23,/(538"(%$(-%)+#7,$($&(!""(*&0( anyone could seriously maintain that we would not be morally obligated to select and implant the healthy embryo in such a case. Another example that illustrates well the principle of favoring the 5&2"(&1"'()7$72"/(3,."%$(%'(3(-%))"2"'$(03</(%'=&,="!(3(*"3,$*<([\6<"326&,-( 3'-(3'(3%,%'4(WM6<"326&,->(A711&!"($*3$(&'"(&) ($*"5(*3!($&(-%"/(3'-(%$( 45

The Princeton Journal of Bioethics

is up to us to choose. Whom should we choose? All other things being equal, we would be morally obligated to choose the elderly person to die 3'-($*"($""'34"2($&(,%="/(!%'#"($*"($""'34"2(*3!(3(5&2"(&1"'()7$72"(J">4>/( %'($"25!(&) (*"3,$*/(37$&'&5</(3'-('75."2(&) (<"32!(3=3%,3.,"O>(:'(5&2"( 4"'"23,($"25!/(%$(%!($*"(=3,7"(&) (*3=%'4(3'(&1"'()7$72"($*3$(K7!$%+"!(&72( intuition that the death of a young person is more tragic than the death of an old person. b. Negative Eugenics and the Open Future There are over 5,000 known genetic disorders, most of which #37!"(P-%!3.%,%$%"!/(12"53$72"(-"3$*/(3'-(!7))"2%'4Q(JS"!'%8(L\]O>(:(0%,,( now list only a few such disorders, as well as some disorders that are not 172",<(4"'"$%#(.7$(2"53%'(!$2&'4,<(%'i7"'#"-(.<(4"'"$%#!/(3'-($*"%2(3!sociated symptoms: 3O(E<!$%#(+.2&!%!v-%)+#7,$<(%'(.2"3$*%'4/(!%'7!(%')"#$%&'!/(1&&2( growth, diarrhea, infertility, early death .O(97'$%'4$&'b!(-%!"3!"v-"$"2%&23$%&'(&) ($*"('"2=&7!(!<!$"5(J$<1%cally beginning in middle age), leading to poor muscle coordination, dementia, and death #O(X3<6A3#*!(-%!"3!"v12&42"!!%="(-"$"2%&23$%&'(&) (5"'$3,(3'-(1*<!%#3,(#313.%,%$%"!(J">4>/(.,%'-'"!!/(-"3)'"!!/(-%)+#7,$<(!03,,&0%'4O(."ginning at about six months after birth, usually resulting in death before four years of age -O(G,f*"%5"2b!(-%!"3!"v&'!"$(%'(&,-(34"(&) (5"5&2<(,&!!/(#&4'%$%="( -"#,%'"/(,&!!(&) (!",)6*",1(!8%,,!(J)""-%'4/(42&&5%'4/("$#>O/(-",7!%&'!/( hallucinations "O(A#*%f&1*2"'%3v$*&74*$(-%!&2-"2/(37-%$&2<(*3,,7#%'3$%&'!/(-",7sions, social withdrawal, loss of motivation, increased risk of suicide )O(G7$%!5(!1"#$275(-%!&2-"2!v%513%2"-(!&#%3,(#&557'%#3$%&'(3'-( social reciprocity, stereotyped repetitive patterns of behavior We see, then, that genetic disorders lead to a wide array of suf)"2%'4(3'-(-%!3.%,%$<(.&$*(1*<!%#3,(3'-(5"'$3,>(:) (0"(03'$($&(4%="("5bryos an open future, or to select embryos with the most open future, we should make sure not to select and implant embryos that have disorders and symptoms like those above. Again, the fact that such disorders and symptoms are detrimental to having an open future stems from consider46

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3$%&'!(&) (."'"+#"'#"(3'-(37$&'&5<>(S"432-%'4(."'"+#"'#"/(%$(0&7,-(."( an understatement to say that symptoms like blindness, impaired muscle #&&2-%'3$%&'/(-%)+#7,$<(%'(.2"3$*%'4/(3'-("32,<(-"3$*(%'=&,="(4"'7%'"( !7))"2%'4()&2($*"(%'-%=%-73,(J3!(0",,(3!(*%!(&2(*"2()35%,<O/(!7))"2%'4($*3$( ."'"+#"'#"(3-=%!"!(7!($&(12"="'$>(C<('&$(!","#$%'4("5.2<&!(0%$*($*"( 2"a7%!%$"(4"'"$%#(-")"#$!/(0"(#&7,-(12"="'$($*%!(!&2$(&) (!7))"2%'4v3!(0",,( 3!(%'#2"3!"(*"3,$*(3'-(*311%'"!!>(:'(#&'$23!$($&(.2%'4%'4(3.&7$("H$2"5",<( dependent and often short lives, we would ensure the existence of individuals who could move freely, form social relationships more easily, and )"",(#&'+-"'$(%'(*3=%'4(3()7,,(,%)"(3*"3-(&) ($*"5>( Autonomy, too, stands to gain from negative eugenics. By not selecting and implanting embryos genetically predisposed to cognitive defects, such as mental retardation, we would ensure the future existence of autonomous individuals, rather than individuals who lack autonomy or have only very limited autonomy. Also, the eugenically selected individuals would be autonomous not only in the strict sense of being mentally sound, but in the broader sense of being able to act effectively on their desires. We might say that, lacking physical disabilities, such as paraplegia and poor muscle coordination, and also lacking the resultant need to depend persistently on others, these individuals would have â&#x20AC;&#x153;physical autonomyâ&#x20AC;? in addition to the more common conception of autonomy. III. The Lack of a Morally Relevant Distinction between Positive and Negative Eugenics :$(!""5!(#,"32($*3$('"43$%="("74"'%#!/(3!(3(5"3'!(&) (53H%5%f%'4( ."'"+#"'#"(3'-(37$&'&5</("'!72"!(3'(&1"'()7$72"()&2(%'-%=%-73,!(3'-(%!( thus morally obligatory. We should now consider positive eugenics. That there is necessarily a practical distinction between positive and negative eugenics may be questioned.5(9"2"/(*&0"="2/(:(0%,,('&$(-0",,(&'($*"(,"4%$imacy or illegitimacy of the alleged practical distinction between positive 3'-('"43$%="("74"'%#!>(F&2($*"(!38"(&) (32475"'$/(:(0%,,(3!!75"($*3$($*"2"( is indeed a practical distinction between them: negative eugenics as the practice of not selecting embryos based on their having undesired genes, positive eugenics as the practice of selecting embryos based on their hav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

The Princeton Journal of Bioethics

ing desired genes. Having assumed that there is a practical distinction between positive and negative eugenics, we might now ask ourselves whether there is 3(5&23,(-%!$%'#$%&'>(:(12&1&!"($*3$($*"2"(%!('&(!7#*(-%!$%'#$%&'>(:) ($*"2"(%!( indeed a moral obligation to select embryos with the most open future, 3'(&.,%43$%&'()&7'-"-(&'(."'"+#"'#"(3'-(37$&'&5</(%$(311,%"!($&(1&!%tive eugenics as much as it does to negative eugenics. The endeavor of )72$*"2%'4(."'"+#"'#"(3'-(37$&'&5</(3)$"2(3,,/('""-('&$(."(#&'+'"-($&( 2"5&=%'4(-")"#$!R(."'"+#"'#"(3'-(37$&'&5<(53<(."()72$*"2"-($*2&74*( enhancement of the individual. ( _) ('"#"!!%$</($*"("H351,"!(&) (1&!%$%="("74"'%#!(&))"2"-(*"2"(32"( *<1&$*"$%#3,/(!%'#"('&(&'"($&-3<(123#$%#"!(1&!%$%="("74"'%#!v&2(3$(,"3!$/( '&$(%'(%$!("5.2<&6.3!"-()&25!>(A$%,,/(:(.",%"="($*3$($*"()&,,&0%'4("H351,"!( are plausible illustrations of the role that positive eugenics could play in selecting embryos with the most open future. First, in consideration &) (."'"+#"'#"/(!%4'%+#3'$(!7))"2%'4(#&7,-(."(12"="'$"-(.<("74"'%#( "'*3'#"5"'$>(:534%'"/()&2(%'!$3'#"/($*3$("5.2<&!(#&7,-(."(!","#$"-( )&2(*3=%'4(3(4"'"($*3$(12"!"2="!($*"($<1%#3,(3.%,%$%"!(&) (<&7$*v0",,6 )7'#$%&'%'4("<"!%4*$/(*"32%'4/(5&.%,%$</(3'-(!&(&'v57#*()72$*"2(%'$&( &,-(34"($*3'('&253,>(:) ($*"!"("5.2<&!(0"2"(!","#$"-(3'-(%51,3'$"-/($*"( lives of the corresponding future individuals would involve many fewer years of physical deterioration and of increasing dependence on others. To take another example, if embryos could be selected for a gene that leads to improved concentration, the corresponding future individuals would likely experience fewer instances of suffering associated with poor concentration, such as car accidents. _'($*"(&$*"2(!%-"(&) (."'"+#"'#"/(!%4'%+#3'$(*311%'"!!(#&7,-(."( gained by eugenic enhancement. To imagine a rather basic example, if genes were found that lead to longer life, the selection of embryos with these genes would ensure the existence of individuals with more years of life, more years of enjoyment, and more time to complete meaningful projects than is normally the case. To take another example, if we were to select embryos with genes that lead to heightened empathy and capac%$<()&2(!",)6"H12"!!%&'/(0"(#&7,-(2"3!&'3.,<("H1"#$($*3$v3$(,"3!$(%'!&)32( as understanding and meaningful relationships with others are aided by *3=%'4("513$*<(3'-(3(0",,6-"=",&1"-(#313#%$<()&2(!",)6"H12"!!%&'v$*"( corresponding future individuals would live lives of greater understanding and more meaningful relationships with others. 48

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Autonomy, too, could be furthered by positive eugenics. The previously mentioned examples of selecting embryos with genes for longer lives and greater physical autonomy would be instances of furthering autonomy. After all, an individual with a longer life and more sustained physical autonomy can reasonably be expected to be less dependent on others, as well as to have more time to complete projects that are personally meaningful. Further, given that autonomy is predicated on being mentally sound, there is reason to believe that autonomy could be furthered by enhancing individualsâ&#x20AC;&#x2122; mental capacity. Like height, intel,%4"'#"(311"32!($&(."(%'i7"'#"-(,324",<(.<(4"'"$%#!/(0%$*(4"'"$%#()3#$&2!( 3##&7'$%'4()&2(3112&H%53$",<(]M^(&) (=32%3$%&'(%'(%'$",,%4"'#"(0%$*%'(3( 1&17,3$%&'(J?*%$'"<(3'-(A#*3))'"2(L]]6L]UO>(:) ("5.2<&!(0"2"(!","#$"-( according to a combination of genes leading to greater intelligence, we could reasonably expect the corresponding future individuals to be more 37$&'&5&7!v&2(3$(,"3!$/(5&2"(3.,"($&("))"#$%=",<(2"3,%f"($*"%2(37$&'&5<>( :$(!""5!(%'-%!17$3.,"($*3$(42"3$"2(%'$",,%4"'#"/(=%2$73,,<(.<(-"+'%$%&'/(%!( associated with greater problem-solving ability and capacity for complex #&4'%$%="(3#$%=%$</(,%8"(3.!$23#$(2"3!&'%'4v3.%,%$%"!($*3$(#3'(2"3!&'3.,<(."( expected to help one live the kind of life one wishes to live. At least to the extent that decisions are based on thinking, more intelligent individuals are less likely to make mistaken or ineffective decisions and more likely to make effective, well-chosen decisions. The lives that they autonomously wish to live are more likely to be actualized. We might say, then, that such individuals have, in some important sense, â&#x20AC;&#x153;fullerâ&#x20AC;? autonomy than individuals of lesser intelligence. We see, then, that the putative moral distinction between negative and positive eugenics does not hold. Bioethicist David Resnik, speaking in the closely related context of gene therapy, puts the point rather directly: _'"(#3''&$("a73$"($*"231<(o3'3,&4&7!($&('"43$%="("74"'%#!(%'( this discussion] with morally acceptable or morally required, and &'"(#3''&$("a73$"("'*3'#"5"'$(o1&!%$%="("74"'%#!y(0%$*(5&23,,<( unacceptable or morally forbidden. To determine the moral jus$%+3.%,%$<(&) (3(4"'"$%#(%'$"2="'$%&'(%'(3(132$%#7,32(#3!"/(&'"(57!$( assess that intervention in light of the relevant facts as well as 5&23,(=3,7"!(3'-(12%'#%1,"!(!7#*(3!(37$&'&5</(."'"+#"'#"/(3'-( K7!$%#"j(JL\UR("51*3!%!(&2%4%'3,O 49

The Princeton Journal of Bioethics

While we may allow a practical distinction between positive and nega$%="("74"'%#!/(%'($"25!(&) ($*"(2","=3'$(5&23,(=3,7"!(3'-(12%'#%1,"!v."'"+#"'#"(3'-(37$&'&5<v$*"2"(%!(!%51,<('&(-%!$%'#$%&'($&(."(53-">( l"43$%="("74"'%#!(53H%5%f"!(."'"+#"'#"(J.<(.&$*(12"="'$%'4(!7))"2%'4( 3'-(%'#2"3!%'4(*311%'"!!O(3'-(37$&'&5</($*"2".<()7,+,,%'4(&72(5&23,( obligation to select among potential individuals those with the most open future. By all indications, positive eugenics is no different in this 2"432-R(%$(53H%5%f"!(."'"+#"'#"(J343%'/(.<(.&$*(12"="'$%'4(!7))"2%'4(3'-( %'#2"3!%'4(*311%'"!!O(3'-(37$&'&5</(3'-(%'(-&%'4(!&(%$(,%8"0%!"()7,+,,!( our moral obligation to select among potential individuals those with the most open future. Ultimately, given that negative eugenics is morally obligatory and that there is no morally relevant distinction between negative and positive eugenics, it follows that positive eugenics, at least in embryo-based forms, is likewise morally obligatory. ( G$($*%!(1&%'$(:(!*&7,-(&))"2(3('&$"(&'(,%5%$!>(D1&'(!""%'4($*"( conclusion of my argument, some will ask, rightly, whether there are any ,%5%$!(&'($*"(7!"(&) (1&!%$%="("74"'%#!v$*3$(%!/(,%5%$!(&'($&(0*3$("H$"'$( and in what ways embryos may be selected or enhanced. Without a mention of any such limits, the argumentâ&#x20AC;&#x2122;s conclusion is likely to seem dangerous; it is all too easy to imagine, Ă la Brave New World, the systematic 5&-%+#3$%&'(&) ("5.2<&!(3'-()"$7!"!($&(!"2="($*"("'-!(&) (#&21&23$%&'!( and to sustain a rigidly hierarchical society. Fortunately, the foundation of the argument itself suggests limits on the uses of positive eugenics. Y&2"(!1"#%+#3,,</($*"(,%5%$!(&'($&(0*3$("H$"'$(3'-(%'(0*3$(03<!("5.2<&!( 53<(."(!","#$"-(&2("'*3'#"-(i&0()2&5(#&'!%-"23$%&'!(&) (0*3$(a73,%$%"!( 0%,,(,"3-($&($*"(5&!$(&1"'()7$72">(:) (3(132$%#7,32(a73,%$<v!3</(%'3.%,%$<($&( "))"#$%=",<(-&(3'<(0&28("H#"1$(5"#*3'%#3,(,3.&2v4&"!(343%'!$(*3=%'4(3'( open future, we are morally prohibited from selecting or cultivating it. As for qualities that seem not to bear any relation to the openness of oneâ&#x20AC;&#x2122;s )7$72"/(!7#*(3!(*3%2(#&,&2/(%$(0&7,-(!""5(5&23,,<(1"25%!!%.,"($&(!","#$(J3!( well as to refrain from selecting) them. And, of course, we are morally obligated to select qualities that do create a more open future. IV. Some Objections to Negative and Positive Eugenics a. Negative Eugenics Does not Respect Disabled Individuals :(0%,,('&0(#&'!%-"2(&.K"#$%&'!($&("74"'%#!>(X*"(+2!$(%!(3(0",,6 known objection to negative eugenics: the objection that negative eugen50

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ics is inherently disrespectful to disabled individuals. As Marsha Saxton &) ($*"(?&2,-(:'!$%$7$"(&'(B%!3.%,%$<(-2353$%#3,,<(17$!(%$/(PX*"(5"!!34"(3$( $*"(*"32$(&) (0%-"!12"3-(!","#$%="(3.&2$%&'(o3'3,&4&7!(*"2"($&('&$(!","#$ing and implanting certain embryos] on the basis of prenatal diagnosis o3'3,&4&7!(*"2"($&(@VBy(%!($*"(42"3$"!$(%'!7,$n(!&5"(&) (7!(32"(u$&&( i30"-b(%'(&72(="2<(BlG($&("H%!$R(0"(32"(7'0&2$*<(&) (."%'4(.&2'Q(Ja$->( in Parens and Asch S2). Closely related to this objection is the claim that -%!3.,"-(%'-%=%-73,!(#3'(,%="(*311<(3'-()7,+,,%'4(,%="!/(57#*(,%8"('&'-%!3.,"-(%'-%=%-73,!>(:$(*3!(.""'(#,3%5"-/()&2(%'!$3'#"/($*3$()35%,%"!(0%$*( disabled individuals are capable of functioning well, at least based on characteristics such as parental stress and the quality of the parent-child 2",3$%&'!*%1(J@32"'!(3'-(G!#*(A]O>( The above objection may be interpreted as a charge that negative eugenics is immoral because it prevents the existence of individuals 0*&(#&7,-(,%="(=3,73.,"/()7,+,,%'4(,%="!>(_) (#&72!"/(%) (%'$"212"$"-($*%!(03</( $*"(&.K"#$%&'()3,,!(i3$>(?*%,"('"43$%="("74"'%#!(-&"!(%'-""-(12"="'$($*"( future existence of disabled individuals who could live valuable lives, it -&"!(!&(.<(!","#$%'4(&$*"2(%'-%=%-73,!($&(."(.&2'v&$*"2(%'-%=%-73,!(0*&( not only could also live valuable lives, but who have a higher probabil%$<(&) (,%=%'4(,%="!($*3$(32"(*311<(3'-(*"3,$*<>(:'(3'<(132$%#7,32(%'!$3'#"/( whether negative eugenics is used has no bearing on the fact that an individual will be brought into existence. The only difference is that, in the case of negative eugenics, the future individual will be virtually guaranteed not to have a disability. A weaker and more plausible interpretation of the objection is that the practice of negative eugenics is itself a mark of disrespect to032-(-%!3.,"-(%'-%=%-73,!v3'(%51,%#%$(3)+253$%&'($*3$(0"(=%"0($*"5(3!( not worthy of existing. Even in this weaker form, however, the objection fails. Simply put, it is a non sequitur. There is nothing in the endeavor to provide embryos an open future, or to select and implant embryos with the most open future, that implies disrespect toward existing disabled individuals. Even though a goal of negative eugenics is to reduce the incidence of disability, such a goal is fully compatible with recognizing that -%!3.,"-(1"&1,"(#3'(3'-(-&(*3="(0&2$*0*%,"(,%="!>(:'($*%!(#&'$"H$/(3,,($*3$( the practice of negative eugenics commits us to is the belief that futures without disability are more open than futures with disability.

The Princeton Journal of Bioethics

b. Positive Eugenics Would Lead to Homogenization _.K"#$%&'!($&(1&!%$%="("74"'%#!(32"(5&!$(&)$"'(#&'!"a7"'$%3,ist. That is, they appeal to the imagined consequences of the practice of 1&!%$%="("74"'%#!/(0*%#*(32"(3,,"4"-($&(."(7'3##"1$3.,">(_'"(!7#*(&.K"#tion charges that the practice of positive eugenics would lead to societal homogenization, or a society in which all individuals have the same or very similar genes, thereby greatly diminishing the diversity of human thought, behavior, and even appearance. The worry is that the value of -%="2!%$<(3'-(&) (P,"!!($*3'(1"2)"#$Q(%'-%=%-73,!v)&2("H351,"/(.2%,,%3'$( but mentally disturbed intellectuals, such as the mathematician John l3!*v0&7,-(."(,&!$>( Partly because such a scenario is clearly not certain to come true, %$(%!(-%)+#7,$($&(+'-("H351,"!(%'($*"(2","=3'$(,%$"23$72"(&) ($*%!(&.K"#$%&'( being made explicitly. However, it is easy to sense intimations of it. Ac#&2-%'4($&(.%&"$*%#%!$(`"&'(q3!!/()&2(%'!$3'#"/(Pj$*"(17.,%#(%!(2%4*$($&( ."(35.%=3,"'$(3.&7$(4"'"$%#($"#*'&,&4<j($*"!"(0&22%"!(o3.&7$($*"(7!"!( of genetic technology] are, in fact, in touch with the deepest matters of &72(*753'%$<(3'-(-%4'%$</(3'-(0"(%4'&2"($*"5(3$(&72(1"2%,Q(J[Z[6[ZLO>( Also, in the words of bioethicist Michael Burgess, â&#x20AC;&#x153;The current ad hoc addition of genetic tests to the standard of practice merely because they 12&=%-"(3##723$"(4"'"$%#(%')&253$%&'(%!('&$(K7!$%+3.,">(X*%!(%!(132$%#7,32,<( true as social and psychological effects cannot be adequately described or 12"-%#$"-Q(JLN[O> The most prominent feature of this objection, of course, is that it is a slippery slope objection; it appeals to the supposedly likely consequences of positive eugenics in an attempt to show that we should not practice it. That the practice of positive eugenics may lead to homog"'%f3$%&'/(*&0"="2/(-&"!('&$(!""5($&(."(3(!7)+#%"'$(2"3!&'($&(27,"(&7$( 1&!%$%="("74"'%#!("'$%2",<>(:$(!""5!/(%'!$"3-/($*3$($*"(5&!$($*%!(&.K"#$%&'( can establish is that we are morally obligated to be very careful in how we practice positive eugenics. While he is speaking of genetic engineering rather than eugenics per se, bioethicist Jonathan Glover effectively summarizes the problem with the slippery slope objection in a way that applies equally to positive eugenics: The risk of disasters provides at least a reason for saying that, if we do adopt a policy of human genetic engineering, we ought $&(-&(!&(0%$*("H$2"5"(#37$%&'j>(X*%!(P12%'#%1,"(&) (#37$%&'Q(%!( 52

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less strong than one ruling out all positive engineering, and allows room for the possibility that the dangers may turn out to be very remote, or that greater risks of a different kind are involved in '&$(7!%'4(1&!%$%="("'4%'""2%'4j>($*"(32475"'$()2&5(2%!8(12&=%-"!(5&2"(K7!$%+#3$%&'()&2($*"(12%'#%1,"(&) (#37$%&'($*3'()&2($*"( !$2&'4"2(.3'(&'(3,,(1&!%$%="("'4%'""2%'4>(J]]MR("51*3!%!(&2%4%'3,O A second point worth noting is that, given the assumption that the choice of which embryo to implant would rest with the parents, homogenization would be mitigated, at least to a considerable extent, by different parental preferences. Some parents would prefer to have boys, others girls; some would prefer a blond-haired child, others a brunette; it is easy to imagine various other examples. Third, the objection seems to assume that homogenization in any )&25(%!($&(."(3=&%-"->(X*%!(3!!751$%&'(%!(a7"!$%&'3.,"/(*&0"="2>(:'-""-/( it appears quite clear that there could be good instances of homogeniza$%&'>(:) (=%2$73,,<("="2<&'"(0"2"(*"3,$*%"2/(5&2"("513$*"$%#/(3'-(5&2"( creative, for instance, it is hard to imagine how that could be an unfortu'3$"(#*3'4">(:'(&2-"2($&(*3="(3'<()&2#"/($*"(&.K"#$%&'()2&5(*&5&4"'%f3$%&'(0&7,-('""-($&(!1"#%)<(J[O(0*%#*()&25!(&) (*&5&4"'%f3$%&'(32"(,%8",<( 7'-"2(1&!%$%="("74"'%#!(3'-(JLO(0*<($*"!"()&25!(&) (*&5&4"'%f3$%&'( would be bad. Fourth, the objection neglects the potential for safeguards against *&5&4"'%f3$%&'>(:)/()&2(%'!$3'#"/(3!(!&5"(!""5($&()"32/(132"'$!b(3.%,%$<( to select the sex of their children would lead to a general sexual imbalance in favor of males, governments could take a variety of measures to ameliorate the imbalance. Mary Anne Warren describes a few potential measures: â&#x20AC;&#x153;Couples might be forbidden to use sex preselection to produce sons until they have already produced at least one daughter; or tax penalties or other disincentives might be used to reduce the attractiveness of all-male families. Ways might even be found to reduce economic -%!#2%5%'3$%&'(343%'!$(0&5"'/($*7!(2"-7#%'4(!&'612")"2"'#"Q(JLNeO>(:'( particular, the use of tax incentives would seem to be an effective way to respond to any sort of imbalance or negative homogenization. c. Positive Eugenics Would Exacerbate Inequality and Discrimination Closely related to the objection regarding homogenization is the &.K"#$%&'($*3$(Pj%) (=3,73.,"("'*3'#"5"'$!(0"2"(3=3%,3.,"(&',<($&($*"( 53

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better-off, existing inequalities in opportunity might be exacerbated” JC7#*3'3'("$(3,>(LeMO>(X*3$(%!/(!%'#"(3(!%'4,"(12&#"-72"(&) (@VB(J%'#,7-%'4(:;FO(#&!$!(w[e/MMM6w[\/ZMM(3'-(%!($*"2")&2"(3##"!!%.,"(&',<($&($*"( 2%#*/($*"2"(!""5!($&(."(3(2"3,(2%!8($*3$(1&!%$%="("74"'%#!(0&7,-(."'"+$( only the rich, leaving genetic disorders a stigma distinctive to the poor JP@2"6%51,3'$3$%&'(V"'"$%#(B%34'&!%!(o@VByn(G##"!!($&(@VBQO>( Like the previous objection, this is a slippery slope objection. Thus, to a certain extent, some of the responses to the previous objec$%&'(311,<($&($*%!(&'">(F&2("H351,"/(%$(!""5!(5&2"(K7!$%+"-($&(#&'#,7-"( that, rather than banning positive eugenics outright, the risk of exacerbating inequality should make us cautious in how we practice positive eugenics. Also, the potential for safeguards seems present here. There could be laws, for instance, that prohibit insurance companies from discriminating on the basis of genetic background. Additionally, it is likely that as PGD becomes more established and less cutting-edge in future years, it will become more affordable and accessible. This, at least, appears to be the pattern of other developments %'(5"-%#%'"/(!7#*(3!($"!$%'4()&2(97'$%'4$&'b!(-%!"3!"(JI73%-(LNeO>(G$( least one bioethicist predicts that genetic testing in general will become 5&2"(#&55&'(3!($%5"(13!!"!(JI73%-(LNZO>(X*7!/(0"(!*&7,-(=%"0(0%$*( some skepticism the notion that positive eugenics through PGD would be available only to the rich. Finally, it is worth noting that, even if positive eugenics does exacerbate existing inequality, it would not be a “harm-centered” exacerba$%&'(&) (%'"a73,%$<(J9Ed:O/(&2(3'(%'!$3'#"(&) (*325%'4($*"(0&2!"6&))/(.7$( 3(P."'"+$6#"'$"2"-Q("H3#"2.3$%&'(&) (%'"a73,%$<(JCEd:O/(!%'#"(%$(0&7,-(%'=&,="(&',<(%'#2"3!%'4($*"(."'"+$(3'-(&11&2$7'%$%"!(&) ($*"(."$$"26&))>(X*"( difference between these two types of exacerbation of inequality is mor3,,<(!%4'%+#3'$>(9Ed:(!""5!(a7%$"(#,"32,<($&(."(3(5&23,(02&'4/(0*"2"3!( CEd:/(3$($*"(="2<(,"3!$/(%!('&$(3!(02&'4>(Y&!$(&) (7!(2"3-%,<(3##"1$( %'!$3'#"!(&) (CEd:v)&2(%'!$3'#"/("H1"'!%="($23%'%'4(#&72!"!(3'-(12"13ration materials for standardized educational tests. A strict commitment $&(3=&%-%'4(CEd:(0&7,-(2"a7%2"()3=&2%'4($*"(3.!"'#"(&) (!7#*(#&72!"!( 3'-(53$"2%3,!v3!(0",,(3!(3,,(&$*"2(4&&-!($&(0*%#*("="'(3(2",3$%=",<(!53,,( 1&2$%&'(&) ($*"(1&17,3$%&'(,3#8!(3##"!!v&="2($*"%2(3=3%,3.%,%$<(&',<($&($*"( well-off. But such a position borders on the absurd; in outright opposi$%&'($&(."'"+#"'#"/(%$(%!($*"("a7%=3,"'$(&) (!3<%'4($*3$("="2<&'"b!(#%2#75stances should be worsened to match those of the worst-off. Perhaps, 54

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$*"'/('&$(3,,(CEd:(%!(5&23,,<(%51"25%!!%.,">( V. Conclusion :'($*%!(131"2(:(*3="(3247"-($*3$(J[O('"43$%="("74"'%#!(%!(5&23,,<( &.,%43$&2</(JLO($*"2"(%!('&(5&23,,<(2","=3'$(-%!$%'#$%&'(."$0""'(1&!%$%="(3'-('"43$%="("74"'%#!/(3'-(JeO($*"(&.K"#$%&'!($&(1&!%$%="(3'-('"43tive eugenics are weak. From these claims it follows that we are morally &.,%43$"-($&(123#$%#"(!&5"()&25(&) (1&!%$%="("74"'%#!v3$($*"(="2<(,"3!$/( embryo-based forms, of which selection of embryos on the basis of PGD is an exemplar. :$(2"53%'!($&(."(!""'(0*"$*"2(!&#%"$<(0%,,("5.23#"("5.2<&6.3!"-( forms of positive eugenics. Doubtlessly, the notorious and morally disastrous eugenic practices of the 20th century have made many reluctant to 123#$%#"(3'<()&25(&) ("74"'%#!>(k"$/(3!(p35"!(B>(?3$!&'(1&%'$!(&7$/(Pj we must not fall into the absurd trap of being against everything Hitler 03!()&2Q(JLL\O>(:) (0"(32"($&(*3="(&1"'(5%'-!(3'-(#,"32(5&23,($*%'8%'4/( we must not allow the mistakes of the past to blind us to the extraordinary potential of positive eugenics, the potential to create a better world by leading to more open futures.

The Princeton Journal of Bioethics

Works Cited C"37#*351/(X&5(`>/("$(3,>/("-!>(E&'$"51&232<(:!!7"!(%'(C%&"$*%#!>(]$*( "->(C",5&'$/(EGn(?3-!0&2$*/(LMMU>(@2%'$>( Buchanan, Allen, et al. “From Chance to Choice: Genetics and Justice.” C"37#*351("$(3,>(LL]6Lee>(@2%'$>( C724"!!/(Y%#*3",(Y>(PC"<&'-(E&'!"'$n(d$*%#3,(3'-(A&#%3,(:!!7"!(%'(V"'"$%#(X"!$%'4>Q(C"37#*351("$(3,>(Le\6LNL>(@2%'$>( B3=%!/(B"'3(A>(PV"'"$%#(B%,"553!(3'-($*"(E*%,-b!(S%4*$($&(3'(_1"'( F7$72">Q(X*"(93!$%'4!(E"'$"2(S"1&2$(L]>L(J[WW]On(]6[Z>(pAX_S>( Web. 5 May 2011. V,&="2/(p&'3$*3'>(PI7"!$%&'!(3.&7$(A&5"(D!"!(&) (V"'"$%#(d'4%'""2%'4>Q(C"37#*351("$(3,>(]\N6]]N>(@2%'$> q3'$/(:553'7",>(V2&7'-0&28(&) ($*"(Y"$31*<!%#!(&) (Y&23,!>(X23'!>( Y32<(V2"4&2>(l"0(k&28n(E35.2%-4"(D@/([WW]>(@2%'$>( Kass, Leon. Life, Liberty, and the Defense of Dignity: The Challenge for Bioethics. San Francisco: Encounter, 2002. NetLibrary. Web. 24 April 2011. q&2!4332-/(E*2%!$%'">(:'$2&-7#$%&'>(q3'$(=%%6HHH>(@2%'$>( Y32a7%!/(B&'>(P?*<(G.&2$%&'(:!(:55&23,>Q(C"37#*351("$(3,>(eNZ6eZL>( Print. Mill, John Stuart. “Utilitarianism.” The Classical Utilitarians: Bentham 3'-(Y%,,>(d->(p&*'(X2&<"2>(:'-%3'31&,%!n(93#8"$$/(LMMe>(WZ6[N]>( Print. Parens, Erik and Adrienne Asch. “The Disability Rights Critique of Pre'3$3,(V"'"$%#(X"!$%'4n(S"i"#$%&'!(3'-(S"#&55"'-3$%&'!>Q(X*"( Disability Rights Critique of Prenatal Genetic Testing. Spec. issue &) (X*"(93!$%'4!(E"'$"2(S"1&2$(LW>Z(J[WWWOn(A[6ALL>(pAX_S>( ?".>(LU(G12%,(LM[[> P@2"6%51,3'$3$%&'(V"'"$%#(B%34'&!%!(J@VBO>Q(9753'(F"2$%,%!3$%&'(T( d5.2<&,&4<(G7$*&2%$<>(9753'(F"2$%,%!3$%&'(T(d5.2<&,&4<(G7$*&2%$<>(LW(_#$>(LMMW>(?".>(LM(G12%,(LM[[>( P@2"6%51,3'$3$%&'(V"'"$%#(B%34'&!%!(J@VBOn(G##"!!($&(@VB>Q(S"12&ductive Health Technologies Project. Reproductive Health Technologies Project. 2011. Web. 20 April 2011. I73%-/(q%5."2,<(G>(P@2"-%#$%="(V"'"$%#(X"!$%'4>Q(C"37#*351("$(3,>(LNe6 LN]>(@2%'$> 56

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Resnik, David B. “Human Genetic Engineering.” C"37#*351("$(3,>(L\\6 L]L>(Print. A%'4"2/(@"$"2>(PF35%'"/(G)i7"'#"/(3'-(Y&23,%$<>Q(@*%,&!&1*<(T(@7.,%#( G))3%2!([>e(J[W]LOn(LLW6LNe>(pAX_S>(?".>([M(Y3<(LM[[>( ;3$%#3'/(E&'42"43$%&'()&2($*"(B&#$2%'"(&) ($*"(F3%$*>(P:'!$27#$%&'(&'( S"!1"#$()&2(9753'(`%)"(%'(:$!(_2%4%'(3'-(&'($*"(B%4'%$<(&) ( Procreation.” The Ethics of Reproductive Technology. Ed. q"''"$*(B>(G,1"2'>(l"0(k&28n(_H)&2-(D@/([WWL>(Ue6W]>(@2%'$> ?3,$"2!/(`"S&<>(P:'$2&-7#$%&'($&(E*31$"2(Nn(d74"'%#!(3'-(9753'(V"'"$%#!>Q(C"37#*351("$(3,>([WW6LMN>(@2%'$>( Warren, Mary Anne. “The Ethics of Sex Preselection.” The Ethics of Reproductive Technology. Ed. Kenneth D. Alpern. New York: _H)&2-(D@/([WWL>(LeL6LN\>(@2%'$>( ?3$!&'/(p35"!(B>(PV"'"!(3'-(@&,%$%#!>Q(C"37#*351("$(3,>(LL[6LL\>( Print. Whitney, Glayde and Kenneth F. Schaffner. “Genetics and Human C"*3=%&2n(A#%"'$%+#(3'-(S"!"32#*(:!!7"!>Q(C"37#*351("$(3,>(L]e6 LU[>(@2%'$>(

The Princeton Journal of Bioethics

The Unethical Nature of Moral Obligation Lauren Mashburn ’13 Centre College

2%&2($&([WWM/($*"(&',<(&1$%&'($&(3(132"'$(0%$*(3(4"'"$%#(-%!&2-"2($&( ensure that they did not produce offspring with a genetic disorder 03!($*2&74*(3.&2$%&'>(:'([WUW/($*%!(#*3'4"-(3!($*"(+2!$(!7##"!!)7,(@2"6 :51,3'$3$%&'(V"'"$%#(B%34'&!%!(#<#,"(03!(#&51,"$"-/(#2"3$%'4(3(03<()&2( genetically disabled couples to ensure a “normal” child, one absent of a genetic disorder. The most widely accepted philosophical view, presented most popularly by Singer, is that with the availability of this option, using @VB($"!$%'4($&(+'-(3(P'&253,Q("5.2<&(%!('&$(&',<("$*%#3,/(.7$(5&2ally obligatory. The choice, then, to knowingly implant an embryo with a known genetic disorder would be unethical. However, in observance to the Kantian and Utilitarian ethical theories, the analysis of a few case studies, and the opinions of medical professionals, it is obvious that this %!('&$($*"(#3!">(:$(%!(5&23,,<(1"25%!!%.,"($&(*3="(%')&253$%&'(&.$3%'"-( from PGD testing that diagnose an embryo with a genetic disorder, and choose to implant the embryo with hopes for a child to be born. This #,3%5(%!(="2<(-"$3%,"-(3'-(!1"#%+#>(9&0"="2/(0%$*($*"($27$*)7,'"!!(&) ($*%!( claim, the claim of moral obligation set forth by Singer is not only philosophically unsound, but possibly unethical in itself. @2"6:51,3'$3$%&'(V"'"$%#(B%34'&!%!(J@VBO(%!($*"(!#2""'%'4(3'-( detection of genetic diseases or chromosome abnormalities in eggs or "5.2<&!(%'(3-K7'#$($&(%'6=%$2&()"2$%,%f3$%&'(J:;FO(%'(&2-"2($&(12&-7#"( healthy children. The most common genetic diseases that have been !#2""'"-(.<(@VB(32"(#<!$%#(+.2&!%!/(!%#8,"(#",,(3'"5%3/(X3<(A3#*!(B%!ease, Huntington Disease, and myotonic dystrophy. PGD is currently available in the United States as a reproductive option for couples in $*2""(4"'"23,(#3$"4&2%"!n(J[O(@32$'"2!(0%$*(&="2(3(LZ^(#*3'#"(&) (12&-7#%'4(3(#*%,-(0%$*(3(4"'"$%#(-%!"3!"R(JLO(@32$'"2!(0*&(*3="(*3-('75"2&7!( 7'"H1,3%'"-(5%!#322%34"!(3'-(0&5"'(&="2(2"12&-7#$%="(34"R(3'-(JeO( Couples in which one of the partners is a carrier for a chromosome rearrangement.1(:'(&$*"2(#&7'$2%"!(@VB($"!$%'4(%!(."%'4(7!"-($&(-"$"25%'"( the sex of the child, for ‘savior children,’ and has potential of determin1

http://www.arizonarms.com/pgd

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ing the height, intelligence, etc. of any particular embryo. However, these departments are not important to the discussion of this thesis. My thesis also does not intend to make any arguments against the ethical permis!%.%,%$<(&) (",%5%'3$%'4(3'("5.2<&(.3!"-(&'(@VB($"!$%'4(2"!7,$!v&',<($*"( moral obligation associated with it. There is a philosophical stance that promotes a change in the US policy involving PGD testing. This change would require the elimination of embryos that tested positive for a certain list of genetic disorders. Singer’s argument is as follows: =?$ He begins with the assumption that suffering from death from lack of medical care is bad. ;?$ :) (%$(%!(%'(&72(1&0"2($&(12"="'$(!&5"$*%'4(.3-()2&5(*311"'%'4/(0%$*&7$($*"2".<(!3#2%+#%'4(3'<$*%'4(&) (#&51323.,"( moral importance, we are morally obligated to do it. 2,3 When applied to PGD testing, the argument goes as such: Genetic disorders lead to death, and therefore, are bad. So, because PGD testing 3,,&0!(7!($&(12"="'$($*3$(.3-()2&5(*311"'%'4/(0%$*&7$(!3#2%+#%'4(3'<thing of equal value, then one is obligated to eliminate embryos that have genetic disorders. His argument is extremely popular amongst the philosophical world. However, the discussion that follows may in fact prove &'"(&) (*%!(3!!751$%&'!(3!()3,!"/($*"2")&2"(-%!271$%'4($*"(i&0(&) ($*"(32gument and disproving it entirely. There are many cases in which genetic disorders are not bad, and do not necessarily all lead to immediate death. :'($*"()&2$*#&5%'4(-%!#7!!%&'($*"2"(0%,,(."(32475"'$!($&7#*%'4(&'(.&$*( $*"(12%'#%1,"(&) (37$&'&5<(3'-(."'"+#"'#"($*3$(0%,,(*3="(%51,%#3$%&'!( towards the downfall of Singer’s philosophical position. :'(&2-"2()&2(@VB($&(."("$*%#3,,<(1"25%!!%.,"/(&'"(57!$(+2!$(3--2"!!($*"("$*%#3,(1"25%!!%.%,%$<(&) (:;F(3'-($*"(5&23,(!$3$7!(&) ("5.2<&!( because both are necessary components of the PGD process. The ethi#3,'"!!(&) (:;F(!$2&'4,<(-"1"'-!(&'($*"(5&23,(!$3$7!(&) (3'("5.2<&>(:) (3'( "5.2<&(*3!(5&23,(!$3$7!/(:;F(#3''&$(."(3(5&23,(3#$(."#37!"(%$(-%!#32-!( countless excess embryos. Therefore, in order to consider PGD ethical 3$(3,,/(0"(57!$(3!!75"($*3$(:;F(%!("$*%#3,/(3'-($*"2")&2"/(3'("5.2<&(-&"!( not have moral status. There will be no evidence provided to support this assumption; however, granting these two assumptions is necessary in order for PGD testing to be ethical as a whole. 2 (9"('&$"!($*3$(.<(P0%$*&7$(!3#2%+#%'4(3'<$*%'4(&) (#&51323.,"(5&23,(%51&2$3'#"Q(9"(5"3'!(P0%$*&7$(#37!%'4(3'<$*%'4(",!"( #&51323.,<(.3-($&(*311"'/(&2(-&%'4(!&5"$*%'4($*3$(%!(02&'4(%'(%$!",)/(&2()3%,%'4($&(12&5&$"(!&5"(5&23,(4&&-/(#&51323.,"(%'(!%4'%+#3'#"($&($*"( bad thing that we can prevent.” 3 A%'4"2/(@"$"2>(PF35%'"/(G)i7"'#"/(3'-(Y&23,%$<>QPhilosophy and Public Affairs>(=&,>([/('&>([(JA12%'4([W]LO/(11>(LLW6LNe>(s(*$$1ngg000> 7$%,%$32%3'>'"$g!%'4"2g.<g[W]L6666>*$5t

The Princeton Journal of Bioethics

G?$ The Parentâ&#x20AC;&#x2122;s Right to Choose The principle of autonomy requires that the parents be allowed to choose whether or not they would like to implant an embryo with or without a genetic disorder. Therefore, this ethical principle does not provide anything of substance to the argument for or against preserving a genetically disabled embryo. Kantian ethics, off of which the principle of Autonomy is based, strictly demands that an ethical action respect &'"!(1"2!&'*&&->(:'(-&%'4(!&/(&'"(#&7,-('&$(",%5%'3$"($*"(37$&'&5<(&) ( the parents to choose which embryo to implant. United States federal law recognizes this reproductive liberty 3!(0",,>(:'($*"(A712"5"(E&72$(#3!"( Lifchez v. Hartigan, the courts decided that it was up to the parents what kind of child they wanted to have. 4Therefore, allowing that, even bringing a child with a genetic disorder into the world was lawful. There is, however, one philosophically problematic argument put forth against the implantation of a genetically defective embryo that is based on the principle of autonomy. The argument demands that parents must implant an embryo that would have the greatest capacity for autonomy. An embryo with genetic disorder, under this view, has a lesser capacity for autonomy, and therefore must be eliminated. The problems with this claim, however, eliminate its factuality, leaving the decision, once again, up to the parents. There are two main problems with this #,3%5>((X*"(+2!$(12&.,"5(%!($*3$($*"("5.2<&(-&"!('&$(*3="(5&23,(!$3$7!/( and therefore, no autonomy. Therefore, one must address the problems associate with the embryoâ&#x20AC;&#x2122;s capacity for autonomy. or in other words, the future 37$&'&5<(&) ("5.2<&>(X*%!(2"a7%2"!(+2!$/($*"(3!!751$%&'($*3$( an embryo has a future, and second that you know what the future of that embryo might entail. However, this is not possible. Therefore, the claim in broader terms becomes as such: Embryo 1 without Autonomy that may or may not lead to person 1 without Autonomy is worse than Embryo 2 without Autonomy that may or may not lead to person 2 without autonomy. This is not logical, and does not provide an argument against the ethical permissibility of implanting an embryo that has been diagnosed with a genetic disorder. Even if you assume that the life of person 1 would or would not be more autonomous than the life of person 2, there is a third problem. 4Â #&5gt(

Lifchez, Aaron. Neil F. Hartigan. United States Supreme Court, N.D. Illinois. ]eZ(F>A711>([e\[n(G12%,(L\/[WWM>(s*$$1ngg!#*&,32>4&&4,">

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Under the principle of autonomy, it is irrelevant how much autonomy something has ; under Kantian Ethics the purpose is not to create the greatest amount of autonomy, but to avoid the violation of one’s autonomy. Because the embryo does not have Autonomy to begin with, there is no violation in allowing for a Child without Autonomy to be born. GG?$ For the Benefit of the Parents, Child, and Society :$(%!('&$(5&2"(."'"+#%3,($&(",%5%'3$"(3'("5.2<&($*3$(*3!(.""'(-%agnosed with a genetic disorder through PGD testing, even though that means having a genetic disorder. Because utilitarianism requires that an "$*%#3,(3#$(."($*"(5&!$(."'"+#%3,()&2(3,,(3))"#$"-(132$%"!/(0"(57!$(,&&8(3$( how not eliminating such embryos would affect the embryo, the parents, 3'-(!&#%"$<(3!(3(0*&,">((:(*3="($*2""(132$%#7,32(#3!"!($*3$(-"5&'!$23$"( circumstances in which it would be ethical under the Utilitarian principle &) (."'"+#"'#"($&(12"!"2="(3'("5.2<&(0%$*(3(4"'"$%#(-%!&2-"2>( $

B$H%+#$2.&$'"#$6#,#7'$.2 $;.)(#'<

Jono Lancaster suffers from Treacher Collins syndrome. There)&2"/(3'<(#*%,-($*3$(*"()3$*"2"-(*3-(3(ZM^(#*3'#"(&) (%'*"2%$%'4($*"(-%!"3!">((p&'&(3'-(*%!(0%)"(`3723(-%-('&$(#*&&!"($&(*3="($*"%2(+2!$("5.2<&( $"!$"-/(,7#8%,</($*"(+2!$("5.2<&(03!('"43$%="()&2(X2"3#*"2(E&,,%'!>(9&0ever, their second child was tested and tested positive, and they chose for the Child to be born anyways. Their decision was based on the principle &) (."'"+#"'#">((p&'&(2"#&4'%f"!($*3$(1"&1,"(0%$*(-%!3.%,%$%"!/(,%8"(*%5self, have to go through their own type of trials, but can, in some cases, live the lives of normal people. He had the opportunity to grow up, get a job, get married, and decided to have kids of his own- living a quality of life that is comparable to that of a non-diseased person. He noted that no child’s life is perfect; his child’s trials would just be much different than other children’s. Jono’s case demonstrates a situation that can be 311,%"-(3#2&!!($*"(.&32->(:$(%!('&$('"#"!!32%,<(3'<(0&2!"()&2(3(#*%,-(0%$*(3( genetic disorder to be born than a child without a genetic disorder.5 Macrae was the genetic counselor closely associated with the Lancaster Case. He makes statements regarding the implications for the birth of a child with a genetic disorder on society. He commented, “There are all of these other amazing people in the world with genetic -%!&2-"2!/(:($*%'8($*3$($*"(0&2,-(%!(."$$"2(."#37!"($*"<(32"(%'(%$>Q\ He 5 (C32)&2-/(;3'"!!3>(PA*&7,-(Y<(9"2"-%$32<(B%!3.%,%$<(A$&1(Y"(93=%'4(3(C3.<cQ(BBC News Magazine (online)n(G12%,(LM[[>s(*$$1ngg 000>..#>#&>78g'"0!g5343f%'"6[LWUZMNt 6 (Pp&'&(`3'#3!$"2(F&,,&0(D1n(A&(?*3$(:) (Y<(C3.<(%!(C&2'(`%8"(Y"cQ Same Difference: Apr. 2011.

The Princeton Journal of Bioethics

makes the argument that people with genetic disorders do not have any less intrinsic value than those without a disorder. Po@VBy(2"%')&2#"!($*"(!$"2"&$<1%#3,('&$%&'($*3$(-%!3.%,ity per se is a bad thing and that disabled lives are intrin!%#3,,<(,"!!(=3,73.,">(:) (<&7(538"($*"(#&5132%!&'(0%$*( "$*'%#%$</(0*%#*(:(8'&0(%!('&$(3,03<!(*",1)7,/(3'-(<&7( want to start doing this to people of color, then there would be, quite rightly, and outcry. For me, disabled people are part of the rich mix of a diverse society. We want to be working towards a society that can accommodate the range of need that people have, rather than getting rid of people.”] :(0%,,('&$(3247"($*3$($*"(23#%3,(a7"!$%&'(3'-($*"(4"'"$%#(-%!&2-"2(a7"!tion are the same- there seem to be a lot of differences in each situation. 9&0"="2/(:(0%,,(3)+25($*3$(",%5%'3$%'4(3(0*&,"(#&557'%$<(&) (4"'"$%#3,,<(-%!&2-"2"-(1"&1,"(0&7,-('&$('"#"!!32%,<(."(."'"+#%3,($&(!&#%"$<>(Y3'<( people with genetic disorders are just as productive in society and those that aren’t still serve a purpose for the betterment of society. Therefore, allowing for a child with a genetic disorder to be born would be ethically 1"25%!!%.,"(7'-"2($*"(12%'#%1,"(&) (."'"+#"'#">( B$H%+#$2.&$'"#$6#,#7'$.2 $'"#$I9@&<.$%,-$'"#$3%&#,'+ :'(([WW\(3'-(343%'(%'((LMML/((A*32&'(B7#*"!'"37((3'-(E3'-<( McCullough, a lesbian couple living in Maryland, both of whom are deaf, hoped to have a deaf child - a child “whom they felt they could guide and nurture with more understanding than a child with normal hearing.” Both times, they maximized their chances by us%'4((-&'&2(!1"25()2&5((3(()2%"'-(0%$*((+="((4"'"23$%&'!(&) ((-"3)'"!!(%'(( his family. Both times, the couple had PDG to guarantee their success and both of their children were born deaf. U This is an interesting case in which it seems that both parties, $*"("5.2<&(3'-($*"(132"'$!/(32"(4&%'4($&(."'"+$()2&5(*3=%'4(3(-"3) ( child that they can relate to. Deafness is a genetic disorder commonly eliminated by PGD testing as a disease. However, members of the deaf community feel that they are normal people that society has created a stereotype against as being less capable than other members of society. X*"2")&2"/(."%'4(-"3) (%!('&$('"#"!!32%,<(7'6."'"+#%3,>(:'($"25!(&) ($*"( 7 (Pp&'&(`3'#3!$"2(F&,,&0(D1n(A&(?*3$(:) (Y<(C3.<(%!(C&2'(`%8"(Y"cQ Same Difference: Apr. 2011. 8 S"=/(932<(`>(PSdVD`GX:lV(@Sd:Y@`GlXGX:_l(VdldX:E(B:GVl_A:An(X9d(@GX9_`_V:mGX:_l(@S_C`dY>Q( The Harvard Law Review Association: Jun. 2005.

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132"'$!6#*%,-(2",3$%&'!*%1(%$(0&7,-(3#$73,,<(."("H$2"5",<(."'"+#%3,()&2( the parents to have a child that they could relate to and communicate ef)"#$%=",<(0%$*(%'($*"(*&5">(S"432-,"!!($*3$($*%!(%!(3(="2<(!1"#%+#(#3!"/(%$( -&"!(!""5($*3$(%$(03!("$*%#3,(7'-"2($*"(12%'#%1,"(&) (."'"+#"'#"()&2($*%!( child to be born with a genetic disorder. More broadly speaking, there 32"(53'<(-%!&2-"2!($*3$(0&7,-('&$(12&=%-"(3'(7'6."'"+#%3,(,%)"()&2($*"( child. A Case for the Non-existent Future of an Embryo There is a problem with trying to determine the future of an embryo and assuming the life that he or she would live to be more or ,"!!(."'"+#%3,($*3'(3'&$*"2>((X*%!(#3!"(03!('&$(17.,%!*"-(%'(3(0&2,-0%-"( '"0!131"2/(.7$(03!($38"'()2&5(3(.,&4>(:$(="2<(.,3$3'$,<(-"5&'!$23$"!($*"( problem of future-predicting for embryos. P(:(35(3(#322%"2(&) (97'$%'4$&'b!(B%!"3!"/($*"2")&2"(0*"'( considering having children, we looked into the PGD process. _72(+2!$(3$$"51$(%'(LMMM(03!(3(!7##"!!R(0"(*3-(3(1"2)"#$,<(*"3,$*<( ,%$$,"(4%2,j(A*"(%!($27,<(3(4&,-"'(#*%,-(6(.2%4*$/(#,"="2/(."37$%)7,/( $3,,/(!,%5/()7''</(#*325%'4/(&&-,"!(&) (#&'+-"'#"/(!*"("H#",!(%'("=erything, gives and receives so much love, so we feel truly blessed. “A few years later, we went through the process again to produce another HD free child. However, we were part of the 7',7#8<(LZ^($*3$(*3!(3'("H1"2%"'#"(&) ()3%,"-(@VB($"!$%'4>(_72( second child had HD. “Then, a couple years later, we would give PGD another shot. The results were a beautiful baby boy that showed no signs of HD. However, he, unlike my other children, was extremely slow to develop. This very slow developmental pattern eventually led us to see a geneticist to get a diagnosis. He did not have Huntington’s, but he had developed Downs Syndrome. PY<(#*3'#"!()&2(3(.3.<(0%$*(9B(0"2"(LZ^/(5<(2"!7,$!(3)ter PGD were 1/3 healthy children, and 2/3 children with genetic disorders. The odds were better without PGD. However, despite the statistics, we have 3/3 happy children. Given the chance, it doesn’t seem that successful PGD testing would have made us any happier.”W X*%!(#3!"(!3<!($*3$(%$(%!("a73,,<(3!(."'"+#%3,($&(%51,3'$(3'("5.2<&(0%$*( 9 ‘Tats.’ “Has anyone had a baby with PGD?” Huntingtons Disease Association: Feb. 15, 2009.(s*$$1ngg000>*-3>&24>78g.&32-g !*&0$*2"3->1*1c$|ZNt

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a genetic disorder because you cannot know what the future of the embryo is going to hold. There is no guarantee that an embryo without a genetic disorder will not develop disorders or health problems that would worsen its quality of life. There are many problems that reduce the percentage of guarantee for PGD testing to secure a healthy life for an embryo. For one, PGD %!(3('"0($"#*'%a7"(3'-(#3''&$($"!$()&2(3,,(4"'"$%#(-")"#$!(3$(&'#">((:$(%!( $&&("32,<($&(!3<(%$(%!([MM^("))"#$%="()&2($"!$%'4()&2($*3$(&'"(4"'">((Y&!$( 2"#"'$(!$7-%"!(!*&0($*3$(%$(%!(3.&7$(]Z^("))"#$%="()&2($"!$%'4()&2(&'"( 4"'"$%#(-")"#$>((d="'(3)$"2(!","#$%'4(3'("5.2<&/($*"2"(%!(&',<(3(LM^($&( ZM^(#*3'#"(3!!75%'4($*"(5&$*"2(%!(*"3,$*<(3'-(%'(*"2(12%5"(2"12&-7#tive years, that the embryo will latch on to the uterine wall and survive for any length of time during the pregnancy. Therefore, the possibility &) (3#$73,,<(."#&5%'4(12"4'3'$(%!(,&0>((:$(%!(3,!&(%51&2$3'$($&('&$"($*3'( 0*"'(#&'-7#$%54(@VB(!#2""'%'4()&2(:;F/(%'(53'<(#3!"!/($*"(-&#$&2!(-&( '&$(+'-(P'&253,Q("5.2<&!($*3$(*3="($*"(12&1"2(35&7'$(&) (#",,!/(12&1"2( !*31"(3'-(!%f"/(3'-(,3#8(3(4"'"$%#(-%!&2-"2>((_)$"'/("="2<("5.2<&($*3$(%!( tested is found to be abnormal. Therefore, eliminating embryos would ,"3-($&('&(#*%,->((:$(%!(*32-($&(#,3%5($*3$('&(#*%,-(%!(5&2"(."'"+#%3,($&( parents seeking children than a child with a genetic disorder. Therefore, it is morally permissible to have information obtained from PGD testing, strictly those that are diagnosing an embryo with a genetic disorder, and still implant the embryo with hopes for a child to be born.10 III. Implications Prior to this point, this paper has been aimed at the ethical permissibility of implanting embryos with genetic disorders. The addressed #,3%5(%!(3(="2<(!1"#%+#(#,3%5($*3$(3--2"!!"!(&',<(&'"(!1"#%+#(%!!7"6($*3$( 3!!75%'4($*3$("5.2<&!(-&('&$(*3="(5&23,(!$3$7!(3'-($*"(:;F(%!("$*%#3,,<( permissible, then it is morally permissible to have information obtained from PGD testing, strictly those that are diagnosing an embryo with a genetic disorder, and still implant the embryo with hopes for a child to be born. Despite the narrow range of application of this claim, this claim has huge implications that not only counter or disrupt any argument that would require moral obligation to implant only healthy embryos, but it would dismantle the argument completely. From this point forward, this paper will address the implications that my claim has on claims that are similar to or based off of the Singer Moral Obligation argument. 10(((((((((((((((((((@"22</(;%=%"''">(P?*<(E3'#"2(A#2""'%'4(%!(B%)+#7,$()&2(@32"'$!>Q(The Sunday Times: Jan 10, 2009.(s*$$1ngg000>$%5"!&',%'">#&>78g $&,g,%)"}3'-}!$<,"g*"3,$*g32$%#,"ZNUZLWL>"#"t

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The principle of autonomy demands that the parents have a choice in whether or not they choose an embryo with or without a genetic disorder. Whereas this does not provide much substance for or against implanting embryos with genetic disorders, it does not allow for the Singer moral obligation to eliminate the embryo. The principle of autonomy very clearly gives the parents a choice, eliminating that choice by saying it is a moral obligation to implant a “healthy” embryo would therefore, be unethical. ( X*"(A%'4"2(32475"'$(-"53'-!($*3$(%$(0&7,-(3,03<!(."(."'"+#%3,( for a child to be born without a genetic disorder versus with a disorder. :'(&$*"2(0&2-!/(*"(3!!75"!($*3$(,%=%'4(0%$*(3(4"'"$%#(-%!&2-"2(%!(3,03<!( bad. However, two cases have been discussed that give situations in 0*%#*(%$(%!(3#$73,,<("a73,,<(&2(5&2"(."'"+#%3,6('&$(&',<()&2($*"("5.2<&/( but for the parents as well, for the child to be born with a genetic disor-"2($*3'(0%$*&7$>(p&'&(`3'#3!$"2b!(#3!"()&2($*"(."'"+$(&) (!&#%"$<(538"!( a strong argument that says sometimes, not only do genetic disorders '&$(,"3-($&(-"3$*/(.7$($*"<(,"3-($&()7,+,,%'4(,%="!R($*"2")&2"/(%$(%!('&$(bad to have a genetic disorder. The Dechesneau-Mccullough Case for the ."'"+$(&) (.&$*($*"(d5.2<&(3'-($*"(@32"'$(-"!#2%."!(3(!%$73$%&'(%'(0*%#*( %$(%!(."'"+#%3,()&2(.&$*(132$%"!($*3$($*"("5.2<&(*3="(3(4"'"$%#(-%!&2-"2>( B"!1%$"($*"()3#$($*3$($*%!(%!(3(!1"#%+#(#3!"/(2%--%'4($*"(%'-%=%-73,!(%'($*%!( case, and cases that would be similar, of the opportunity to have the child with the genetic disorder would not be eliminating something bad, .7$(#2"3$%'4(3(.3-(!%$73$%&'/(3'-($*"2")&2"60&7,-(."(7'"$*%#3,>(:'($72'/( $*"(+2!$(!$"1($&(A%'4"2b!(32475"'$(%!()3,!"/(3'-($*"(2"!$(&) (*%!(1*%,&!&1*%cal claim does not stand to be true- eliminating embryos with genetic disorders is not and should not be a moral obligation. The “Non-Existent Future” case provides a strong criticism for the second part of Singer’s argument. He wants to assume that PGD testing and embryo elimination is always going to eliminate the bad. However, this case shows that there is not guarantee for good. The par"'$(#3''&$(3!!75"($*3$($*"()7$72"(&) (3'("5.2<&(0&7,-(."(5&2"(."'"+cial without a genetic disorder. First of all, the future of an embryo is not a guarantee at all, the pregnancy could be terminated at any point before the child is born. Second of all, there are still a million other genetic disorders that a child could acquire and they do not test for them all, only a select few depending on your own medical history. Thirdly, as has been argued already, there is no way to determine the quality of the future of a child with a genetic disorder. Therefore, the second part of Singer’s argu65

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ment falls through. There is no guarantee that eliminating the Embryo via PGD is going to create good, or eliminate bad. Therefore, with these points, it not only means that there is no philosophical basis for moral obligation to implant an embryo, but in many cases it would actually be unethical to require the elimination of an embryo with a genetic disorder. Works Cited C32)&2-/(;3'"!!3>(PA*&7,-(Y<(9"2"-%$32<(B%!3.%,%$<(A$&1(Y"(93=%'4(3( Baby?” BBC News Magazine (online): April 2011. http://www.bbc. #&>78g'"0!g5343f%'"6[LWUZMN Pp&'&(`3'#3!$"2(F&,,&0(D1n(A&(?*3$(:) (Y<(C3.<(%!(C&2'(`%8"(Y"cQ Same Difference: Apr. 2011. Lifchez, Aaron. Neil F. Hartigan. United States Supreme Court, N.D. Illinois. ]eZ(F>A711>([e\[n(G12%,(L\/[WWM>(*$$1ngg!#*&,32>4&&4,">#&5g @"22</(;%=%"''">(P?*<(E3'#"2(A#2""'%'4(%!(B%)+#7,$()&2(@32"'$!>Q(The Sunday Times: Jan 10, 2009. http://www.timesonline.co.uk/tol/ ,%)"}3'-}!$<,"g*"3,$*g32$%#,"ZNUZLWL>"#" S"=/(932<(`>(PSdVD`GX:lV(@Sd:Y@`GlXGX:_l(VdldX:E( B:GVl_A:An(X9d(@GX9_`_V:mGX:_l(@S_C`dY>Q(The Harvard Law Review Association: Jun. 2005. A%'4"2/(@"$"2>(PF35%'"/(G)i7"'#"/(3'-(Y&23,%$<>QPhilosophy and Public Affairs>(=&,>([/('&>([(JA12%'4([W]LO/(11>(LLW6LNe>((*$$1ngg000>7$%,%$32%3'>'"$g!%'4"2g.<g[W]L6666>*$5 ‘Tats.’ “Has anyone had a baby with PGD?” Huntingtons Disease Association: Feb. 15, 2009. http://www.hda.org.uk/board/showthread. php?t=54

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Abortion: The Dual Debate Sophia Jih ’12 Princeton University

arely anyone will contradict the statement that killing is wrong. But is killing anything wrong, or does this universality pertain only to *753'!c(:) (!&/(0*3$(%!(%$(3.&7$(."%'4(*753'($*3$(4%="!(&72(,%="!(!71"2%&2( value? And is it always wrong to kill even then? These are central questions to the abortion debate. :'(#&'!%-"2%'4($*"()"$7!b(2%4*$($&(,%)"/($*"2"(32"($0&(-%!$%'#$(-%3,&47"!( 0%$*%'($*"(3.&2$%&'(-".3$"n([O(:) ($*"()"$7!(%!(3(1"2!&'R(3'-/(LO(:) (3,,(1"2!&'!( *3="(3(2%4*$($&(,%)">(:(12&1&!"($*3$(1"2!&'*&&-(#3'(."(-"+'"-(.<(."%'4(%'( $*"(1&!!"!!%&'(&) (!",)63032"'"!!>(:($*"'(3247"($*3$(7'-"2($*%!(-"+'%$%&'/( the fetus is not considered a person. Furthermore, even if it could be given !&5"(2%4*$!(&) (1"2!&'!/('&$(3,,(1"2!&'!(*3="(3(2%4*$($&(,%)">(F%'3,,</(:(0%,,( raise the question of the mother’s right to her body, and how this may affect the morality of abortion. We often hear that Homo sapiens are “people,” and by this right "3#*(&) (7!(*3!(3(=3,73.,"(,%)">(k"$/(:(+'-(%$(a7"!$%&'3.,"($*3$("="2<(*753'( being automatically should be assigned “personhood” exactly at the moment &) (#&'#"1$%&'v0*3$(3.&7$($*%!(5&5"'$(4%="!(*%5($*"(2%4*$($&(,%)"c(X*"( 3,,72"(&) ("!$3.,%!*%'4(1"2!&'*&&-(3$(#&'#"1$%&'(%!(7'-"2!$3'-3.,"v$*"( “unique combination” of one egg and one sperm to form a zygote seems a -"+'%$"(!$32$%'4(1&%'$>(C7$(.%&,&4%#3,,</($*%!(%'$"212"$3$%&'(%55"-%3$",<(27'!( %'$&(12&.,"5!>(F&2("H351,"/(%'$23#<$&1,3!5%#(!1"25(%'K"#$%&'(J:EA:O1 is not condoned by those against abortion, but doesn’t this technique also involve a unique combination of one sperm and one egg? Another complication appears when we consider the creation of twins, which does not occur at conception. How can we say personhood has begun when we do not even know whether there is one person, or two? Finally, what is the difference ."$0""'(3(f<4&$"(3'-(3'<(&$*"2(#",,(%'($*"(.&-<c(_2(."$0""'(&'"(#",,/(&2($0&/( or four? For a debate about the moral acceptability of abortion, we should )&#7!(&'(-"+'%'4(1"2!&'*&&-($*2&74*(5&23,,<(2","=3'$($23%$!n(!"'$%"'#"/( emotionality, reason, and moral agency, to name a few.2(_7$(&) ($*"!"/($*"( #*323#$"2%!$%#(:()"",(%!($*"(5&!$(%51&2$3'$(%!(!"'$%"'#"/(&2(!",)63032"'"!!>( 1 A fertility treatment that involves the “direct injection of a single sperm into the cytoplasm of an egg that has been retrieved for in vitro fertilization.” As taken from Encyclopaedia Britannia. 2 The list is taken from a work of Mary Anne Warren’s, in which she claims that a certain organism must have a good number of $*"(#*323#$"2%!$%#!($&(."(#&'!%-"2"-(1"2!&'!>(:(7!"($*"(,%!$(!%51,<(3!(3(#&'!%-"23$%&'(&) ($*"(=32%&7!($23%$!($*3$(#3'(."(#&'!%-"2"-()&2(1"2!&'*&&->

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Without such knowledge, there would be no differentiation between a *753'(3'-(3(1,3'$v.&$*(*3="(#",,7,32()7'#$%&'!/(5"$3.&,%f"/(3'-(32"(%'( 3,,(&$*"2(03<!(3,%="/(.7$(&',<($*"(*753'(*3!($*"(3.%,%$<()&2(%'$2&!1"#$%&'>(:'( &$*"2(0&2-!/(!",)63032"'"!!/('&$("H%!$"'#"/(-"+'"!(1"2!&'*&&->( X*"(,&4%#3,(3#$%&'('&0(%!($&("H1,&2"($*"(-"+'%$%&'(&) (1"2!&'*&&-( as self-awareness. Personhood requires self-awareness, but this rationality should not be necessary for every moment of our lives. After all, we cannot be said to be completely rational when we are asleep, or very sick, or have -27'8($&&(57#*(3,#&*&,(%'(&'"('%4*$>(X*7!/(:(12&1&!"(3(*753'(#3'(."( considered a person when he has or has had self-awareness, and also has the ability to regain self-awareness if he is temporarily without it. Some ethicists, like Don Marquis and Charles Camosy, argue abortion is wrong because it deprives the fetus of being able to experience a )7$72"(,%8"(&72!(JF`_O>(Y32a7%!(#&'$"'-!(%$(%!(&',<('"#"!!32<()&2(!&5"$*%'4( to have the potential to become a self-aware being for it to have a right to life; to purposefully remove that possibility is immoral.3 However, the potentiality argument is not stringent enough. After all, we do not force 1"&1,"($&(2"12&-7#"(."#37!"($*"<(32"('&$()7,+,,%'4($*"(53H%575(35&7'$( &) (P1"2!&'!Q($*"<(#&7,-(."(#2"3$%'4>(:'!$"3-/(1"2!&'*&&-(!*&7,-(."(-"+'"-( not only by future potential, but also by past development. Barring some unnatural circumstance, a human should form rationality along the course of maturation; only when he achieves this should he be granted the right to life. ?*3$(5&!$(-"+'"!(7!(3!(1"&1,"/($*"'/(%!($*"(#&'!#%&7!'"!!(0"(*3="( created for ourselves. Losing this self-awareness through dying is what 538"!(-"3$*(!%4'%+#3'$()&2(3(1"2!&'>(A&/($*"()"$7!($*3$(-&"!('&$()"",(13%'/( much less have self-consciousness, cannot be said to have the right to life that persons do. Critics may respond that this view will claim infants are also not persons. However, the difference between an infant and a fetus is $*3$($*"()&25"2(%!(!",)6!7)+#%"'$(0*%,"($*"(,3$$"2(%!(#&51,"$",<(-"1"'-"'$(&'( 3'&$*"2(1"2!&'v$*"(5&$*"2v)&2(%$!(.3!%#(5"3'!(&) (!72=%=3,>(l"="2$*","!!/( 0"(!*&7,-(538"($*"(-"+'%$%&'(&) (1"2!&'*&&-(7'%="2!3,,<(311,%#3.,">(?*%,"( we may feel the infant has more of a right to life than a fetus because it %!(!",)6!7)+#%"'$(3'-(#3'()"",(13%'/(%$(%!($27"($*3$(3(="2<(<&7'4(%')3'$(*3!( not yet developed a sense of self.4(:) (%$(0%,,('"="2(43%'(!",)6#&'!#%&7!'"!!( because of a genetic disability or some other illness, then by the proposed -"+'%$%&'/(%$(%!(3,!&('&$(3(1"2!&'> The above view allows for a response to many arguments against 3Â 4Â

Note that this does not always argue against euthanasia. (G!(-"!#2%."-(%'($*"(+",-(&) (-"=",&15"'$3,(1!<#*&,&4<>(A""($*"(S&#*3$(2")"2"'#"()&2(3--%$%&'3,(-"$3%,!>

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abortion. The drunk college student, who arguably is not self-aware, can still be considered a person because he has been previously rational and will wake up the next morning sober and self-aware. The comatose human, so long as his comatose state is not permanent, will also have the right to life. Even the amnesiac, though he has lost his memory and therefore perhaps his self-awareness, has the right to life if we assume he was self-aware before his loss, and will be able to recover this rationality afterwards. Thus, under $*%!(-"+'%$%&'/($"51&232<(,&!!(&) (!",)6#&'!#%&7!'"!!(-&"!('&$(#&22",3$"(0%$*( 3($"51&232<(,&!!(&) (1"2!&'*&&-(&2(=3,7"(&) (,%)">(?*3$($*"(-"+'%$%&'(-&"!( entail, however, is that fetuses, and perhaps also young infants, cannot be assigned personhood until they have matured to a point of achieving selfawareness. Therefore, they do not have the right to life that we normally attribute to rational, adult human beings. However, even being a person does not necessarily mean having a right to life.5(F72$*"25&2"/(K7!$(3!(:(*3="(!*&0'(%$(%!('&$("'&74*($&(!3<($*3$( a fetus is a person and therefore should not be aborted, it is also not enough to say that a fetus is not a person and so abortion is morally permissible. :) ($*"()"$7!(%!('&$(3(1"2!&'/(3'-('&'61"2!&'!(-&('&$(*3="(3(2%4*$( $&( ,%)"/( $*"( -".3$"( !""5!( +'%!*"->( 9&0"="2/( 0"( -&( '&$( +'-( %$( 5&23,,<( permissible to arbitrarily kill animals. Peter Singer argues that under the 7$%,%$32%3'(!$3'-32-/($*"(!7))"2%'4(&) (3,,(!*&7,-(."(#&7'$"-("a73,,<v0"(32"( immoral, or speciesist, if we consider otherwise. Despite some contradiction in Singer’s viewpoint, \ such arguments make the question of whether non-people have the right to life murky enough that we cannot assume only persons have the right to life. Thus, we move to another facet of the abortion debate: even if the fetus were assigned some rights of personhood due to its existence as a living thing, should abortion still be irrevocably banned? The most famous ethicist that assumes the fetus’ personhood but !$%,,(+'-!(3.&2$%&'(3##"1$3.,"(%!(p7-%$*(X*&51!&'/(0*&(7!"!(3(P)35&7!( violinist” metaphor to demonstrate the absurdity of demanding a woman $&(#&'$%'7"(3(12"4'3'#<(!*"(-&"!('&$(03'$>(:'($*%!(5"$31*&2/(3()35&7!( violinist falls into a coma. The society of music lovers determines that only you can save the violinist’s life and break into your home while you are asleep to hook the violinist to you. The music lovers argue that the violinist is an innocent person with a right to life, and because unhooking him will result in his death, this is morally wrong. However, Thompson concludes 5 (?"(12&="($*%!(.<(3,,&0%'4(!",)6-")"'!"(K7!$%+#3$%&'!(3$($2%3,(0*"'(3(*753'(."%'4(-")"'-!(*%5!",) (343%'!$(3'(3$$3#8"2(3'-($*"( attacker is killed in the process. 6 This, paradoxically, seems to contradict his opinion on abortion: that fetuses, lacking self-awareness, do not have a similar right to ,%)"(3!(3-7,$(*753'(."%'4!>(:$(%!('&$(#,"32(0*<($*"(!7))"2%'4(&) (3,,(3'%53,!(!*&7,-(#&7'$("a73,,<(0*"'(A%'4"2()"",!($*3$($*"(!7))"2%'4(&) (3,,(*753'( beings does not.

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that while you would be altruistic in remaining hooked up to the violinist, you are not morally obliged to do so. Thompson is often criticized for basing arguments on a woman who had no choice in her own pregnancy.](_) (#&72!"/(!7#*(#%2#75!$3'#"!v !7#*(3!(231"v*32-,<(1"2$3%'($&($*"(53K&2%$<(&) (#3!"!(%'(0*%#*(3(0&53'( seeks an abortion. Thompson’s response is that if a woman can only abort when she has been raped, that would imply that the fetus only has a right to life when it is conceived under “normal” circumstances. This, Thompson maintains, distinguishes arbitrarily between the fetus conceived from rape and the fetus conceived willingly, which, since the two are not different in any moral sense, cannot be right. C7$(:(-&('&$()"",($*%!(%!/(%'()3#$/(3'(32.%$232<(-%!$%'#$%&'>(X*"(3.&2$%&'( debate struggles to balance the fetus’ right to life against the mother’s right to decide what happens to her own body. The difference the situation 538"!v0*"$*"2(&2('&$($*"()"$7!(03!(#&'#"%="-(0%,,%'4,</()&2(%'!$3'#"v changes the latter issue. The woman who has been a victim of rape has $*"(5&!$(3,,&03'#"()&2(3.&2$%&'v$*"(12"4'3'#<(%!(3(5"'$3,(3'-(1*<!%#3,( burden she did not ask for. The woman who engages in sexual activity and uses contraception responsibly cannot be blamed if such measures fail, and also cannot be forced to continue the pregnancy. The woman who engages in sexual activities without contraception is perhaps the least sympathetic of the cases; it seems arguable that, because she took neither the precaution of using contraceptives nor of remaining abstinent, she “deserves” to take responsibility for her actions and continue the pregnancy. However, not "="2<&'"(%'($*"(0&2,-(%!(4%="'($*"(!35"(8'&0,"-4"(3'-(&11&2$7'%$%"!>(:$( would not be fair to punish a woman because her community has withheld information about contraceptives, or because she is too poor to buy them. X*7!/(:(!744"!$(%$(0&7,-(."(."!$($&(,"43,,<(3,,&0(3.&2$%&'(%'(3,,(&) ($*"!"( cases,U("="'(%) ($*"(5&23,(#&22"#$'"!!(&) ($*"(3.&2$%&'(53<(."(32473.,">(:$(%!( better for the women who are against abortion to be able to refuse abortion than to prohibit the option altogether and in doing so, clearly infringe on the rights of the women who did not have a choice in their pregnancy, and do not want it. While legalized abortion would then differentiate between moral and legal acceptability, if we have already argued that the fetus is not a person and thus does not have a claim on the right to life, such a differentiation is not as worrying. So, the following arguments can be made: The fetus is not a person and therefore does not have a right 7 Grisez and Boyle even argue that her metaphor does not accurately depict the rape situation. 8 (_) (#&72!"/($*"(,"43,(1"25%!!%.%,%$<(&) (3.&2$%&'(&',<("H$"'-!($&(3(#"2$3%'(1&%'$>(?"(#&7,-('&$/()&2(%'!$3'#"/(3,,&0(0&5"'($&( carelessly abort in the eighth month of pregnancy.

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to life. Even if the fetus were to be given personhood, not all people, depending on the circumstances, have an equal right to life. Finally, the mother’s moral right to decide what happens to her own body may change depending on the circumstances of her pregnancy; however, we should allow her the legal option of abortion to make sure that we are not restricting abortion for women who have less of a moral responsibility for their pregnancies. While there are still many other #&'!%-"23$%&'!()&2($*"(,"43,(235%+#3$%&'!(&) ($*%!(&7$,&&8/(*&1")7,,<($*"( above analysis will prove useful for the formulation of future policy on this contentious issue. Works Cited E35&!</(E*32,"!>(@2%'#"$&'(D'%="2!%$<>(@2%'#"$&'/(lp>([W(_#$(LMMW>(V7"!$( Lecture. Grisez, Germain and Joseph Boyle. “Abortion for Health and in Cases of S31">Q(`%)"(3'-(B"3$*(0%$*(`%."2$<(3'-(p7!$%#">(l&$2"(B35"/(:ln( D'%="2!%$<(&) (l&$2"(B35"(@2"!!/([W]W>(LMe6LM]>(_',%'"> P%'$23#<$&1,3!5%#(!1"25(%'K"#$%&'>Q(d'#<#,&1~-%3(C2%$3''%#3>(LMMW>( d'#<#,&1~-%3(C2%$3''%#3(_',%'">(M](l&=>(LMMW>(s*$$1ngg000> .2%$3''%#3>#&5gdC#*"#8"-g$&1%#g[NZUL[]g%'$23#<$&1,3!5%#6!1"256 %'K"#$%&'t> `3F&,,"$$"/(974*/("->(d$*%#!(%'(@23#$%#">(Y3,-"'/(YGn(C,3#80",,/(LMM]>(@2%'$> Y32a7%!/(B&'>(PG'(G2475"'$($*3$(G.&2$%&'(%!(?2&'4>Q(`3F&,,"$$"([e]6[N]>( Print. Rochat, Philippe. “Five levels of self-awareness as they unfold early in life.” E&'!#%&7!'"!!(3'-(E&4'%$%&'([L(JLMMeOn(][]6]e[>(@2%'$> A%'4"2/(@"$"2>(PG,,(G'%53,!(32"(da73,>Q(`3F&,,"$$"([][6[UM>(@2%'$> 666>(@2%'#"$&'(D'%="2!%$<>(@2%'#"$&'/(lp>(L[(_#$(LMMW>(`"#$72"> X*&51!&'/(p7-%$*(p>(PG(B")"'!"(&) (G.&2$%&'>Q(`3F&,,"$$"([[]6[LZ>(@2%'$> ?322"'/(Y32<(G>(P_'($*"(Y&23,(3'-(`"43,(A$3$7!(&) (G.&2$%&'>Q(`3F&,,"$$"([L\6 [e\>(@2%'$>

The Princeton Journal of Bioethics

The Pursuit of Genetic Interventions to Prevent Gene-Based Disabilities: Morally Obligatory or Objectionably Impermissible? Natasha Mehta ’12 D'%="2!%$<(&) (;%24%'%3

isabilities rights advocates strongly oppose the use of genetic %'$"2="'$%&'!()&2($*"(12"="'$%&'(&) (4"'"6.3!"-(-%!3.%,%$%"!>(:'($*%!( 131"2/(:(0%,,(-%!#7!!($*"(#&'#"2'!($*3$($*%!(42&71(*&,-!()&2(!7#*(7!"!(&) ( 4"'"$%#($"#*'&,&4%"!>(:'(3--%$%&'/(:(0%,,("H1,3%'(*&0($*"!"(#&51,3%'$!( do not warrant the elimination of genetic interventions for the purpose &) (12"="'$%'4(4"'"6.3!"-(-%!3.%,%$%"!/(.7$(3$($*"(!35"($%5"/(:(0%,,(!*&0( how proponents of the disabilities rights movement have some legitimate concerns in regards to the particular use of genetic technologies. :'(#&'#,7!%&'/(:(0%,,(311"3,($&($*"(#&'#"1$(&) (2"12&-7#$%="()2""-&5(3'-( the ethical theory of utilitarianism to make the argument that the use of genetic technologies for the avoidance of disabilities should be not only ethically permissible but also morally obligatory. Supporters of the disabilities rights movement object to the utilization of genetic interventions to prevent gene-based disabilities with three main arguments: the “loss of support” argument, the “justice $2751!(."'"+#"'#"Q(32475"'$/(3'-($*"("H12"!!%=%!$(32475"'$(JC7#*3'3'( et al.). The main proposition behind the “loss of support” argument is that a reduction in the number of persons suffering from disabilities will ,"3-($&(3(-"#2"3!"(%'(17.,%#(!711&2$()&2(1"&1,"(0%$*(-%!3.%,%$%"!(JC7#*3'3'("$(3,>(L\\O>((@7.,%#(!711&2$/(%'($*%!(#3!"/(53<("'$3%,($*"(3,,&#3$%&'( of certain economic resources to members of the disabilities group and $*"(%'i7"'#"($*3$(-%!3.%,%$%"!(2%4*$!(3-=&#3$"!(*3="(&'($*"(17.,%#(0*"'(%$( comes to policymaking and changing the law to favor disabilities group, both of which are crucial in order to maintain their position as equal members of society. Moreover, the argument presupposes that public support for disabled persons correlates to the number of members in that group. The primary objection here is the underlying assumption that changes in public support vary concomitantly with changes in the number of individuals with disabilities. More particularly, the objection 12"!75"!($*"(17.,%#(&.!"2="!(!7#*(#*3'4"!(3'-(5&-%+"!($*"(35&7'$(&) ( support it will offer based on the number of disabled persons present 72

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after these changes. First, there is no evidence that this case. Rather, it is possible to maintain public support for a minority group even when the number of members of that group is dwindling. This particularly points to the fact that other factors play a role in how much public support can be drawn for people with disabilities. For example, activism by individu3,!(0%$*(-%!3.%,%$%"!(3'-($*"%2()35%,%"!(*3!(311"32"-($&(."($*"(,"3-%'4(%'i7ence on public support. Raising awareness in the public and policymakers is the initial step towards building public support. Furthermore, this can be accomplished regardless of the number of disabled persons since people without disabilities can also be promoting the interests of this group. Accordingly, the argument for loss of support fails to justify the objection to genetic interventions for the prevention of gene-based disabilities. The loss of public support for this minority group is a legitimate worry; however, it is evident that public support for people with disabilities may have no correlation to the actual numbers of disabled individuals. Thus, we can proceed with genetic interventions for the prevention of gene-based disabilities without housing concern for the loss of public support for the disabilities group. A second charge presented by disabilities rights advocates against the prevention of gene-based disabilities can be conveyed through the PK7!$%#"($2751!(."'"+#"'#"Q(JC7#*3'3'("$(3,>(L]MO(32475"'$>(F%2!$/(%'( the context of this argument, justice is taken to represent the prevention &) (*325>(G##&2-%'4,</(%'K7!$%#"(0&7,-(#2"3$"(!"2%&7!(*325J!O>(A"#&'-/($*"( 12%'#%1,"(&) (."'"+#"'#"(12&5&$"!(3#$%&'!($*3$(."'"+$(&$*"2!(3'-(!"2=%'4()&2($*"%2(0",,."%'4>(X*"(PK7!$%#"($2751!(."'"+#"'#"Q(32475"'$(3!serts that genetic interventions to avoid genetically based disabilities fol,&0($*"(12%'#%1,"(&) (."'"+#"'#">(:'(-&%'4(!&/(*&0"="2/(K7!$%#"(%!()&24&'">( :'(!1%$"(&) ($*"(."'"+$!($*3$(2"!7,$/(7!%'4(4"'"$%#($"#*'&,&4%"!()&2($*%!( 1721&!"(4"'"23$"!(3(P2%!8(&) (%'K7!$%#"!($&(-%!3.,"-(1"2!&'!Q(JC7#*3'3'("$( 3,>(L]MO>(A1"#%+#3,,</(%$(1&!"!(3(!"2%&7!(*325($&(%'-%=%-73,!(0%$*(-%!3.%,%ties such that it could deny them equal opportunity. Since in attempting $&(3-*"2"($&($*"(12%'#%1,"(&) (."'"+#"'#"(3(1&$"'$%3,()&2(%'K7!$%#"(32%!"!/( $*"(172!7%$(&) (."'"+#"'#"(%'($*%!(!%$73$%&'(!*&7,-(."(3.3'-&'"->((X*"2"fore, according to proponents of this argument, we should not engage in genetic intervention to prevent disabilities although they may afford ."'"+$($&($*"(%'-%=%-73,J!O(%'=&,="->(JC7#*3'3'("$(3,>(L]MO((d!!"'$%3,,</( 73

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the obligation of ensuring that no people are put at risk of suffering %'K7!$%#"!(!7213!!"!($*"(&.,%43$%&'(&) (12&=%-%'4(."'"+$!($&(&$*"2!>( Nevertheless, two problems inherently exist in this argument. F%2!$/(3,$*&74*(&'"(#3'(#,3%5($*3$(."'"+#"'#"(53<(."(!"#&'-32<($&( justice, the premise that the use of genetic interventions in this manner creates the risk of injustice to people with disabilities renders the "'$%2"(32475"'$(7'!&7'->(:$(-&"!('&$(,&4%#3,,<()&,,&0($*3$(!7#*(4"'"$%#( %'$"2="'$%&'!(32"(7'K7!$($&(-%!3.,"-(%'-%=%-73,!>(:'!$"3-/($*"(-%!3.%,%$%"!( $*"5!",="!(32"(#2"3$%'4($*"(!"'!"(&) (%'K7!$%#"(&2($*"(*325(J,&!!(&) ("a73,( &11&2$7'%$<O/(%) (%$(%'()3#$("H%!$!>(:$(%!(7')3%2($&(1,3#"($*"(.72-"'(&) ($*"( infringement of the principle of justice on genetic interventions when these technologies actually aim to eliminate the injustices caused by disabilities and offer all individuals the chance at equal opportunity. ( A"#&'-/($*"(12"5%!"($*3$($*"(12%'#%1,"(&) (."'"+#"'#"(3,&'"/( and not along with justice, mandates genetic interventions to preclude -%!3.%,%$%"!(%!(3'("22&'"&7!(!$3$"5"'$>(E&'!%-"2%'4(P."'"+#"'#"Q(3!(%$( 03!(-"+'"-("32,%"2/($*"(12%'#%1,"(&) (."'"+#"'#"(%'(3'-(&) (%$!",) (!""5!( to entail the aspect of justice that the argument addresses. Equal op1&2$7'%$<(#3'(."(2"432-"-(3!(3(."'"+$($*3$(!*&7,-(."(12&5&$"-(7'-"2( ."'"+#"'#">(X*%!(%!("!1"#%3,,<(2","=3'$(%'($*"(#3!"(&) (1"&1,"(0%$*(-%!abilities since their situation has more likely been associated with the loss of equal opportunity for members of their group. So if we were to take $*"(12%'#%1,"(&) (K7!$%#"(7'-"2($*"(12%'#%1,"(&) (."'"+#"'#"/($*"(PK7!$%#"( $2751!(."'"+#"'#"Q(32475"'$(#275.,"!(!%'#"(K7!$%#"/(&2("a73,(&11&2$7'%$</(0&7,-(."(12&=%-"-(.<(."'"+#"'#">(F2&5($*3$(%$()&,,&0!($*3$(4"'"$%#( interventions should be undertaken in accordance with the principle of ."'"+#"'#"(!%'#"($*"(53$$"2(&) (1&$"'$%3,,<(3#$%'4(7'K7!$,<('&(,&'4"2("Hists. The third objection that disabilities rights advocates raise is the expressivist objection. According to the expressivist objection, decisions regarding genetic interventions â&#x20AC;&#x153;express negative judgments about 1"&1,"(0%$*(-%!3.%,%$%"!Q(JC7#*3'3'("$(3,>(L]LO>(G!(%$(0&7,-(!744"!$/($*"!"( '"43$%="(K7-45"'$!(1&!"(3'(%'K7!$%#"($&($*%!(42&71(&) (%'-%=%-73,!>(_'"( such judgment is allegedly directed towards the value of human life. The decision to use genetic interventions to prevent disabilities conveys the notion that lives of individuals without disabilities are valued over the ,%="!(&) (%'-%=%-73,!(0%$*(-%!3.%,%$%"!>(:'(!*&2$/($*%!('"43$%="(K7-45"'$("Hpresses the claim that the lives of people with disabilities are not worth 74

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living. Another negative judgment regards an individualâ&#x20AC;&#x2122;s right to exist. A1"#%+#3,,</(%$(3!!"2$!($*3$(%'-%=%-73,!/(,%8"($*&!"(0%$*(-%!3.%,%$%"!/(!*&7,-( not be brought into this world and thus have no right to exist; only those who are perfect, in the sense that they have no disabilities, possess such a 2%4*$>(JC7#*3'3'("$(3,>(L]LO ( :$(%!(#,"32(0*<(12&1&'"'$!(&) ($*"(-%!3.%,%$%"!(2%4*$!(5&="5"'$( would vehemently oppose decisions to intervene if such negative judgments were being made. The negative judgments attack the concepts of what it means for a human life to have value and of what determines &'"b!(2%4*$($&("H%!$>(:'(2"432-!($&(1"&1,"(0%$*(-%!3.%,%$%"!/(!7#*(K7-45"'$!/( albeit implicit, can be quite discouraging. That a life with a disability has less value than a life without a disability and that perfect individuals J%'-%=%-73,!(0%$*&7$(-%!3.%,%$%"!O(!*&7,-(&',<("H%!$(32"('&$%&'!($*3$(#&7,-( potentially have detrimental effects on the psychology of disabled persons. Not only do these expressions disregard persons with disabilities as equal members of society but they also !""5($&("H#,7-"(-%!3.,"-(1"2!&'!()2&5($0&()7'-35"'$3,/(-"+'%'4('&tions of what disabilities rights advocates consider as key aspects of what it means to be human: to have a life that is worth living and to have the right to live that life. To have a life that is worth living is assigning some value to a human life such that if the value of the life happened to depreciate, that human life would not be worth living. Essentially, the higher the value &) ($*"(,%)"/($*"(5&2"(0&2$*($*3$(,%)"(*3!($&(#&'$%'7"(&'(%'("H%!$"'#">(:'( light of the expressivist argument, the lives of disabled individuals are lower in value than those of individuals without disabilities. This devaluing of people with disabilities motivates strong objections by people in the disabilities community. Disabilities rights advocates argue, and rightly so, that devaluing the lives of disabled persons is based on a generalization of what a disability entails and on a mere assumption of what the lives of disabled individuals are like. The generalization incorporates the idea that all disabilities cause serious suffering and impose limitations on the lives they directly affect. The assumption is grounded in these generalizations and upholds that any life with such suffering and restrictions #3''&$(1&!!%.,<(#&'$3%'(3'<(*311%'"!!(&2(."()7,+,,%'4>(A711&2$"2!(&) ($*"( -%!3.%,%$%"!(2%4*$!(5&="5"'$(+25,<(2"K"#$($*"(4"'"23,%f3$%&'(3'-(3!!751tion on the basis that no one disability is the same and that the lives of %'-%=%-73,!(0%$*(-%!3.%,%$%"!(#3'/(%'(2"3,%$</(."(3!("a73,,<()7,+,,%'4(3'-(K&<75

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)7,(3!($*"(,%="!(&) (%'-%=%-73,!(0%$*&7$(-%!3.%,%$%"!>(JC7#*3'3'("$(3,>(L]eO(:'( the end, perspective plays a decisive role when it comes to determining if a disabled person’s life has the same value as the life of a nondisabled individual. Thus, evaluations of the value of disabled individuals’ lives should not be associated with decisions to participate in genetic interven$%&'!>(:$(%!(31132"'$($*3$(!7#*(K7-45"'$!(32"(5"2",<(K7-45"'$!/(!7#*($*3$( an opinion about the value of disabled person’s life does not alter or may not even be an accurate portrayal of the actual value that the life has. Moreover, the separation of such judgments from the decision to intervene elucidates other reasons for the use of genetic intervention to prevent gene-based disabilities. Choosing to intervene does not presuppose that the lives of disabled persons are not worth living and that con!"a7"'$,<(0"(!*&7,-(12"="'$(!7#*(,%="!()2&5(#&5%'4(%'$&("H%!$"'#">(_'( the other hand, genetic interventions are simply attempts at promoting ."'"+#"'#"(3##&2-%'4($&(3(!$3'-32-(&) (K7!$%#"(3'-(3=&%-%'4($*"(,%5%$3tions that a disabled person might face, all of which are acknowledged in an individual’s choice to have a child according to their preferences. Reproductive freedom, phrased by John Robertson as “procre3$%="(,%."2$</Q(Ja$->(%'(C7#*3'3'("$>(3,(LM\O(%!(-"+'"-(3!($*"()2""-&5($&( 538"(#*&%#"!($*3$(1"2$3%'($&(&'"b!(2"12&-7#$%&'>((:'(2"432-!($&(4"'"6 based disabilities in their children, parents would have the reproductive freedom to pursue genetic interventions that would prevent said disabilities. Yet at the same time, this also warrants the freedom to not pursue any interventions, even if it would mean that the child will be born with a disability. Ultimately, an individual’s reproductive freedom appeals to $*"(12%'#%1,"(&) (2"!1"#$()&2(37$&'&5<(z($*"(3.%,%$<($&(538"(1"2!&'3,/( uncoerced choices. Undoubtedly, there are exceptions in that not all in-%=%-73,!(32"(3.,"($&("H"2#%!"(37$&'&5<(J%>">(%')3'$!(3'-(5"'$3,,<(-%!3.,"-( persons); however, for the purpose of this discussion, that is irrelevant, and we can assume that most individuals are capable of acting autonomously. Autonomy encompasses aspects of reproductive freedom such as the freedom to choose how many children to have, when to procreate, with whom to procreate, and what kind of children to have. Ascribing autonomy to an individual’s reproductive freedom permits the individual to also make whatever decisions he/she wishes that are relevant to the choices they are offered by reproductive freedom, including decisions to 76

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partake in genetic interventions that preclude gene-based disabilities in their offspring. ( B%!3.%,%$%"!(2%4*$!(3-=&#3$"!(0&7,-(12&.3.,<(&.K"#$($&($*%!(K7!$%+cation of the use of genetic interventions. They might argue that having the reproductive freedom to choose what kind of children to have and consequently what kind of genetic interventions one would like to use in order to create the “ideal” child does not necessarily require that we exercise that freedom. However, based on the objections already mentioned earlier that this group holds against this particular use of the genetic interventions, the counter-argument they present here is weak in that utilizes false or empty claims. ( _'($*"(#&'$232</(%'("=3,73$%'4(P12&#2"3$%="(,%."2$<Q(3'-(%$!( importance to reproduction in general, it can be seen as a freedom that 1"&1,"(0%!*($&("H"2#%!"()&2(!1"#%+#/(=3,%-(2"3!&'!(3'-('&$(5"2",<(."#37!"( the freedom exists. Reproduction is presumably a fairly private matter. :'-%=%-73,!(12")"2($*3$($*"%2(12&#2"3$%="(-"#%!%&'!(32"('&$(&1"'($&($*"( public for commenting or criticism. Correspondingly, any choices involving procreation are choices that people wish to make without coercion from or even judgment by others. Hence, as it pertains to the option of what kind of children to have, an individual’s ability to act according to that choice should not be affected by public opinion or subject to the pressures of people who rightly have no say in such a private matter. A person can choose to utilize genetic interventions for the prevention of gene-based disabilities in her or her own children, and his or her reproductive freedom proffers and protects that choice. Apart from the parents’ decision to act according to their wishes in terms of what kind of child they want to have, it should not be ignored that the child also has interests and rights that should be taken into #&'!%-"23$%&'>((_'"(1"2$%'"'$(3'-(!%4'%+#3'$(2%4*$(%!($*"(#*%,-b!(P2%4*$($&( 3'(&1"'()7$72"Q(JF%"'."24([WUM(a$->(%'(C7#*3'3'("$(3,>([]MO>(X*"(#&'cept of a “right to an open future” embodies the idea that the child has a right to not be limited in access to opportunities that should otherwise normally be available to the child. Furthermore, this right upholds $*"(132"'$!b(&.,%43$%&'($&("'!72"($*3$($*"%2(#*%,-(*3!(3'(&1"'()7$72">(:'( having an open future, the child should possess any capacities or abilities that would make attainable various opportunities that are offered to other members of society. 77

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Factors that may close off opportunities for the child might include characteristics that the parents’ selected for or against during $*"(#2"3$%&'(&) ($*"(#*%,->(:$(%!(%'($*%!(2"3,5($*3$($*"(132"'$!b(#*&%#"!(3'-( decisions regarding genetic interventions are kept in check. To guarantee that the child has an open future, parents may or may not be obligated to pursue certain interventions. Their discretion as to what might be best for their child may not correspond with what would be perceived as best in order for the child to have an open future. With the possibility of $*%!(-%!#2"13'#</(132"'$!(!*&7,-(."(2"a7%2"-($&(%'$"2="'"(J&2($&(0%$**&,-( from intervening in certain cases) to assure that they do not violate their child’s right to an open future by restricting any array of opportunities $*3$(!*&7,-(&$*"20%!"(."(3=3%,3.,"($&($*"(#*%,->(JC7#*3'3'("$(3,>([]M6[][O ( :'("))"#$/($*"(132"'$!b(-"#%!%&'!(#&'#"2'%'4($*"(4"'"$%#(%'$"2="'tions they use to create the child of their choice must be balanced along with the child’s right to an open future. To make certain that the child’s right is not violated, it seems apparent that parents should utilize genetic interventions that would prevent gene-based disabilities. For this discussion, we can assume that disabilities do limit the opportunities that are available to an individual. But how objectionable such limitations are and to what extent they infringe upon child’s right to an open future are debatable. Today, legislation, primarily as a result of disabilities rights activism, has increased opportunities and accessibility for people with disabilities. This has drastically shortened and, in some way, bridged the gap between what disabled persons were previously unable to do and what they are now permitted to take part in and enjoy. Considering this, one can argue that to not prevent gene-based disabilities through genetic interventions is not a strong violation of a child’s right to an open future. G(!7)+#%"'$(23'4"(&) (&11&2$7'%$%"!(%!(!$%,,(3=3%,3.,"($&(3(-%!3.,"-(#*%,->(:'( addition, it is not necessary that all possible opportunities that are acces!%.,"(.<(&$*"2(5"5."2!(&) (!&#%"$<(."(53-"(3##"!!%.,"($&($*%!(#*%,->(;32%ous factors such as social class, location, and parents’ educational backgrounds determine the opportunities that the child will or will not have. With such varying circumstances, parents might not be morally obligated, in all situations necessarily, to pursue genetic interventions that would prevent gene-based disabilities in their child. Nevertheless, in spite of some truth in this argument, the ability $&("'$%2",<(",%5%'3$"(3'<(,%5%$3$%&'!($*3$(3(!1"#%+#(-%!3.%,%$<(5%4*$(%51&!"( on a child should be acted upon regardless of the extent or objection78

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3.,"'"!!(&) (!3%-(,%5%$3$%&'!>(:) (132"'$!(*3="($*"(3.%,%$<($&(%'$"2="'"(%'( order to prevent a gene-based disability so that their child may have a more open future, it is wrong and ethically impermissible if they choose to not intervene. Following that, parents are morally obligated to pursue genetic interventions for the prevention of gene-based disabilities in their children on account of their obligation to provide an open future to their child. ( :'(3--%$%&'($&(%'#2"3!%'4($*"(23'4"(&) (&11&2$7'%$%"!($*3$(0&7,-( be available to the child and acting in accordance with the parentâ&#x20AC;&#x2122;s reproductive freedom to have the kind of child they desire, genetic interventions that preclude gene-based disabilities generate a greater, overall good that we are morally bound to pursue. According to Millâ&#x20AC;&#x2122;s theory of utilitarianism, what is morally right is the act that leads to the greatest amount of happiness, and one should act so as to attain this maximal 7$%,%$</(&2(."!$(&="23,,(#&'!"a7"'#"!(JS3#*",!(WeO>((G11,<%'4($*%!($*"&2<( to cases involving genetic interventions for the prevention of gene-based disabilities, it is evident that avoiding disabilities would generate the greatest amount of happiness or good. ( :'(-"$"25%'%'4($*"(*311%'"!!($*3$(%!(4"'"23$"-()2&5($*"(3.!"'#"( &) (3(-%!3.%,%$</(0"(57!$(+2!$(&.!"2="(*&0(3'-(*&0(57#*(*311%'"!!(%!( lacking in the presence of a disability and contrast it to the amount of happiness that would be present if there were no disability. By imagining *&0(57#*(*311%'"!!(3(-%!3.%,%$<($38"!(303<(3'-(+472%'4($*3$(%'$&(3(*<1&thetical case in which doctors were able to cure a disabled individual of his or her disability, we can witness a change in the collective happiness of any individuals that the disability directly and indirectly affects. ( G(-%!3.%,%$<("H"2$!(3'(%'i7"'#"(71&'('&$(&',<($*"(1"2!&'(%$(2"sides in but also the disabled personâ&#x20AC;&#x2122;s family members and other members of society as well. Eliminating a disability all together would have a positive, cascading effect in that the disabled individual and all the people $*3$(32"(3))"#$"-(.<($*3$(1"2!&'(0&7,-("H1"2%"'#"(."'"+#%3,(&7$#&5"!>( First and foremost, the disabled person would be free of any suffering 3'-(13%'($*3$($*"(-%!3.%,%$<(#37!"!(J$*"("H$"'$(&) (.&$*(&) (0*%#*(-"1"'-!( &'($*"(!1"#%+#(-%!3.%,%$<O>(G--%'4($&($*3$/(3'<(,%5%$3$%&'!($*3$($*"(-%!ability brought about would no longer exist, offering a broader range of opportunities to the individual. The absence of suffering and pain and the addition of a wider array of opportunities would augment the overall happiness that a disability would generally reduce. Second, the disabled 79

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individualâ&#x20AC;&#x2122;s family members would experience great relief if the disabil%$<(0"2"(3.!"'$>(E32%'4()&2(3(-%!3.,"-(#*%,-(#3'(."(1*<!%#3,,</(+'3'#%3,,</( 3'-("5&$%&'3,,<(#*3,,"'4%'4>((:) ($*"(#37!"(&) ($*"!"(!$2"!!"!(%!(2"5&="-/( *311%'"!!(#&7,-(2"1,3#"($*"!"(*32-!*%1!(J%'(=32<%'4(,"=",!/(&) (#&72!"O/( contributing to the overall amount of happiness. Third, other members &) (!&#%"$<(0&7,-(2"31(."'"+$!()2&5($*"(3.!"'#"(&) (-%!3.%,%$%"!>(X*"(2"sources that were originally allocated to aid only this one group in society #3'('&0(."(-%!$2%.7$"-(35&'4!$(3,,(5"5."2!(&) (!&#%"$<>(:'-7.%$3.,</($*"( more resources that are accessible to all would produce a greater amount of happiness than if certain resources were only to be consumed by a !","#$(42&71(J%>">($*"(-%!3.%,%$%"!(42&71O>( ( _'($*"(0*&,"/($*"(3.!"'#"(&) (-%!3.%,%$%"!(0&7,-(4"'"23$"($*"( most happiness than the presence of disabilities would. Taking this into consideration, we are morally obligated to act so as to bring about this greater amount of happiness. To do so would entail the utilization of 4"'"$%#(%'$"2="'$%&'!($&(12"="'$(4"'"6.3!"-(-%!3.%,%$%"!>(_'($*3$(3#count, parents are ethically responsible for pursuing these interventions in their potential children since the overall amount of happiness would be maximized. This is not to say that disabled persons and their family members do not experience happiness. Merely, the amount of happiness that would exist without a disability is, in effect, greater than the amount of happiness that comes about under the presence of a disability. While recognizing the objections that disabilities rights advocates hold against the use of genetic interventions to prevent gene-based disabilities, it is crucial that the moral obligations, freedoms, and rights of individuals are not compromised in determining if such interventions should or should not be pursued. Supporters of the disabilities rights movement present some reasonable worries about the use of these genetic interventions, yet they are simply theoretical and can never be real concerns. The fact then remains that there are more important considerations that should be made that involve the parentâ&#x20AC;&#x2122; reproductive freedom, the childâ&#x20AC;&#x2122;s right to an open future, and the moral duty to take the actions that generate the greatest amount of happiness. These three take precedence above any objections and reinforce the ethical obligatoriness of employing genetic interventions to preclude gene-based disabilities.

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Works Cited Buchanan, Alan, Dan W. Brock, Norman Daniels, and Daniel Wilker. From Chance to Choice: Genetics and Justice. New York: Cambridge D'%="2!%$<(@2"!!/(LMM\>(@2%'$>(( Rachels, James. The Elements of Moral Philosophy. New York: McGraw-Hill, 2003. Print.

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Sleep, Schizophrenia, and the New Social Function of Dreams Megan Winkelman ’13 Stanford University

ant, Jung, Schopenhauer and Aristotle all participated in developing the rich historical relationship between sleep and insanity. Kant 3247"-/(P$*"(,7'3$%#(%!(3(038")7,(-2"35"2Q(Jq3'$O>(p7'4(3--"-/(P`"$( the dreamer walk about and act like one that is awake and we have the #,%'%#3,(1%#$72"(&) (-"5"'$%3(123"#&HQ(Jp7'4O>(A#*&1"'*37"2(.",%"="-/( “A dream is a short-lasting psychosis, and a psychosis is a long-lasting -2"35Q(J`3(C322"O>(G2%!$&$,"(1&!$7,3$"-(%'(-"(!&5'%%"!(J&'(!,""1O($*3$($*"( “faculty by which we are subject to illusion when affected by disease is %-"'$%#3,(0%$*($*3$(0*%#*(12&-7#"!(%,,7!&2<("))"#$!(%'(!,""1Q(JY#E2""2<O>( This essay asks how this common philosophy measures up to recent neurological evidence. Will ‘the lunatic as a wakeful dreamer’ improve theories on the mechanism of diseases like schizophrenia? These philosophers agree there exists a connection between dreaming and the kind of lunacy caused by debilitating diseases like schizophrenia. Can these interpretations inform a more compassionate understanding of psychosis as part of the human spectrum? These questions probe the )2374*$(2",3$%&'!*%1(."$0""'(3(2"-7#$%&'%!$(.7$(!#%"'$%+#(5&-",(&) ($*"( brain and philosophy’s intuitions about human behavior. While exposing $*"(,%5%$3$%&'!(&) (!#%"'$%+#(2"!"32#*(:(*&1"($&(12&1&!"(3'(3,$"2'3$"(2&,"( for dreams as a bridge between the ill and the healthy in society, a bridge that may change the perception and treatment of schizophrenics. X*%!(131"2(+2!$(3'3,<f"!($0&(!$7-%"!(&'($*"(5"#*3'%!5(&) ( !#*%f&1*2"'%3>(X*"(+2!$/(Y#E2""2<b!(!$7-</(12&1&!"!($*3$(!#*%f&1*2"'%#!( 53<("H1"2%"'#"(P5%#2&6!,""1!Q(-72%'4($*"%2(038%'4(*&72!(J!711&2$%'4( the dream/lunacy link). The second “over-learning hypothesis” study supports an entirely different explanation of schizophrenia. Both studies 7!"($*"(!35"(%')"2"'$%3,(12&#"!!/(,%'8%'4(!%5%,32(!<51$&5(12&+,"!(&) ($0&( different states, to arrive at different conclusions, revealing the method’s ,%5%$3$%&'!>(:(3247"($*3$($*%!(P2")235%'4Q(&) (3(5"#*3'%!$%#(a7"!$%&'/( 0*%#*(&)$"'(&##72!(%'(!#%"'#"(J3!(-"!#2%."-(.<(S&."2$(A31&,!8<O/(%!('&$(3( wasteful process, if the reframing encourages compassion for the mentally ill. Just as dreaming can be terrifying and mysterious, unexplained by science, so is schizophrenia. Recognizing this shared experience allows “healthy individuals” some rudimentary understanding of insanity. Therefore McCreery’s microsleep theory may allow society to cultivate 82

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acceptance for the mentally ill as we develop better mechanistic understandings and more effective therapies. First we must answer the neurobiologist’s question: do the act of dreaming and the state of schizophrenia1 share a common neurobiological explanation? The cerebral cortex bears the brunt of the responsibility in activating and inhibiting the electrophysiological and neurochemical 12&#"!!"!($*3$(#2"3$"($*"(P'&253,(5"'$3$%&'Q(&) (038%'4(,%)">(:'(231%-( "<"(5&="5"'$(JSdYO(!,""1/($*"(!,""1(!$34"(-72%'4(0*%#*(-2"35%'4(7!7ally occurs, only dopaminergic activity is detected in the cerebral cortex. The prefrontal cortex shows even lower dopaminergic activity. The lack of inhibition in dreams may be related to dopamine levels in the nucleus accumbens, as well as the localized absence of noradrenaline and seratonin, and the lack of glutamate in the prefrontal cortex and hippocampus. The prevailing theory proposes that these changing neurotransmitter levels “cause disconnectivity of cortical areas, failure of latent inhibition and possibly the concomitant prefrontal dorsolateral deactivation” JB2"35%'4(3'-(A#*%f&1*2"'%3O> :'(3()3!#%'3$%'4($0%!$/(!#*%f&1*2"'%#!(-%!1,3<($*"(!35"(#&4'%$%="( patterns as REM sleepers. Dreaming is a “psychotic-like mentation,” which would be considered a hallucination, delusion or bizarre thought 12&#"!!(%'(3(#&'!#%&7!(1"2!&'>(:) (3(038")7,(*753'(12"!"'$"-(SdY(!$3$"( '"72&$23'!5%$$"2(,"=",!/($*"<(0&7,-(,%8",<(."#&5"(1!<#*&$%#(JB2"35%'4( Sleep Stage). Regardless of the still unknown mechanism that leads to lunacy, neurobiologists agree that the functional dynamics in the prefrontal cortex and the nucleus accumbens are nearly identical in schizo1*2"'%#!(3'-(SdY(!,""1"2!(JB2"35%'4(3'-(A#*%f&1*2"'%3O>(X*"(12&posed link between lunacy and dreaming has a neurological basis, as both states show similar cortical and chemical activ%$<(J+4>([O>((((((

J(?5&#$KL$H.9:%&(,?$GIE$%,-$;)"(M.:"&#,(%$3&.7*#+8 1

(F&2($*"(1721&!"!(&) ($*%!(131"2/(:(7!"($*"(#,%'%#3,(-"+'%$%&'(&) (!#*%f&1*2"'%3(%'$"2#*3'4"3.,<(0%$*(P,7'3#<Q(&2(P%'!3'%$<Q>

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The philosopher-psychologist Charles McCreery proposes a physiological mechanism to unite dreaming and psychosis. Sleep research indicates that the body will fall asleep as a homeostatic response to extreme stress and hyper-arousal, which schizophrenics often experience. Studies of galvanic skin response and smooth pursuit eye movements demonstrate both schizophrenic and manic-depressive patients are prone to hyper-arousal. The link between hyper-arousal and sleep can be 3--%$%&'3,,<(%')"22"-()2&5($*"("))"#$%="(7!"(&) (!"-3$%="!(J'&$(!$%57,3'$!O( to “wake” catatonic patients. McCreery believes psychotics undergo “microsleeps” throughout their waking life. The confusing and taxing transition between sleep and wake could cause hallucination, and reality distortion. The schizophrenic’s process of delusional thinking may help integrate their microsleep dreams into their waking processes. Thus, under McCreery’s theory the psychotic appears as if in a dream state J"H*%.%$%'4(-2"35(#*323#$"2%!$%#!(!7#*(3!(,&!!(&) (37$&'&5</(37$%!52/(i3$tened or inappropriate affect, lack of insight, disorders of belief, thought and language) because he or she is actually drifting in and out of sleep. :) ($*%!($*"&2<(43%'!(5&2"(#2"-%.%,%$<(35&'4($*"(!#%"'$%+#(#&557'%$</(%$( could revolutionize our understanding of mental illness. Some forms of depression could be reevaluated in the context of stress-related hyperarousal, rather than the often-assumed hypo-arousal. The microsleep theory could explain why there are so genetic, diagnostic and positive/ negative polarity affect links between manic-depressive disorder and schizophrenia. Finally, if psychosis could be partly explained in terms of arousal levels, the episodic nature of both manic depression and schizophrenia could be charted and understood through the patient’s oscillating arousal levels. While McCreery’s theory compliments the general intuition that dreaming inspires madness, researchers have failed to discover key supporting evidence, namely daytime REM in schizophrenics. McCreery argues that manic individuals are more likely to show descending Stage [(!,""1(JlSdYO($*3'(3!#"'-%'4(A$34"([(!,""1(JSdYO>(9&0"="2/("=%dence of NREM in waking schizophrenics also has not been observed. Additionally, though both NREM and REM sleep can incite autonomous imagery and other hallucinations, no research has demonstrated that schizophrenic hallucinations are caused by the same mechanism as sleep stage imagery. Similarly, neither the ability to induce sleep in highly 2

(B"+'"-(*"2"(3!(3(12"&##713$%&'(0%$*($*"(%'$"2'3,/('&$($*"(-%34'&!$%#(,3.",>

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stressed individuals nor the high prevalence of nightmares in schizophrenics provides a biological mechanism for the microsleep hypothesis. _$*"2(1&$"'$%3,(&.K"#$%&'!($&(Y#E2""2<b!(5&-",(%'#,7-"(&.!"2=3$%&'!( that schizophrenics do not think they have slept, their eyes are open during waking hours, their motor function is intact, and communication with $*"(&7$!%-"(0&2,-(%!(1&!!%.,"(J!""(+4>([O(JB2"35!(3'-(@!<#*&!%!O> McCreeryâ&#x20AC;&#x2122;s research process is also problematic, which becomes evident when examining the over-learning study, which employs the same 12&#"!!/(7!%'4(!%5%,32(!<51$&5(12&+,"!($&()3!*%&'(3'("H1,3'3$&2<(!$&2</( on the same research subject, the mechanism of schizophrenia, to differ"'$("'-!>(Y#E2""2<b!(12%532<("=%-"'#"(2",%"!(&'(!%5%,32(!<51$&5(12&+,"!( in dream states and schizophrenia, as well as a compelling story that lacks rigor but explains psychosis as a means of incorporating dreams into the waking narrative. The over-learning hypothesis uses common behaviors in a computer program and a schizophrenic patient as a system of proof and a compelling explanatory story that over-learning stresses the brain to demonstrate an entirely different mechanistic theory of schizophrenia. By comparing McCreeryâ&#x20AC;&#x2122;s study and the over-learning study, we see that the same method can lead to vastly different conclusions, indicating the -"!%4'(53<(."(i30"-> :'($*"(&="26,"32'%'4(!$7-<('"72&,&4%!$!(3'-(12&42355"2!(0&28"-( together to create a computer program modeled after neural networks that was able to learn languages and remember stories. They wrote eight different programs attempting to mimic different aspects of schizo1*2"'%3>(_'"(&) ($*"("%4*$(12&4235!(03!(!7##"!!)7,>(G)$"2($*"(2"!"32#*"2!($374*$($*"(#&517$"2(+2!$(3'-($*%2-(1"2!&'('3223$%="!/($*"<(%'#2"3!"-( the programâ&#x20AC;&#x2122;s learning rate and instructed it to forget less. The program then recalled stories in the same way schizophrenics recall stories. The program confused personal narratives and taught third person narratives, jumped from topic to topic and added new information. Because schizophrenics exhibit an excess of dopamine in certain regions and dopamine may signal when new information is important, the over-learning hypothesis may contribute to the underlying neural mechanism of schizophrenia JE&517$3$%&'3,(@3$%"'$!O>(9&0"="2/(!%5%,32(&7$17$!(-&('&$(7'%,3$"23,,<( indicate similar causation. Both McCreery and these computer researchers tread dangerously close to promoting post hoc ergo propter hoc fallacies in their work. Both demand further research into their respective theories after drawing basic symptomatic links between two behavioral states. The '3$72"(&) (5&-"2'(!#%"'$%+#(2"!"32#*(3'-()7'-%'4(1&,%$%#!(-"53'-!($*3$( 85

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researchers become absolute advocates for their vision, even if their lens can be myopic. This reductionist crusade must be supplemented with a more holistic approach. Robert Sapolsky’s critique that science often does more reframing of questions than substantive investigation is key to appreciating the limits of reductionism. This reframing can positively effect public com57'%#3$%&'(0%$*(5%!7'-"2!$&&-(1&17,3$%&'!>(S&."2$(A31&,!8<(%-"'$%+"!( an excellent epistemological dilemma that can be applied to reframing schizophrenia in terms of dreaming. He writes that in dreaming the PFC has a very low metabolic rate, as do the waking states of organisms with low inhibition, including children, violent sociopaths and most animals. His article centers on how neurobiologists could demonstrate Freud’s hypothesis that dreams are the road to fantasy. Sapolsky argues that if clinically repressed people show lower than average PFC metabolism -72%'4(SdY(!,""1(J%'(038%'4(*&72!($*"(#,%'%#3,,<(2"12"!!"-(*3="(*%4*"2( than average PFC activity), dreams may serve as a locus of psychologi#3,(2","3!"(J?%,-(B2"35!O>(9%!(#3="3$($&($*%!(,&4%#(311,%"!(-%2"#$,<($&(&72( exploration of the schizophrenia-dream research. Sapolsky writes: Mind you, even if it turns out that the lack of metabolic activity in the prefrontal cortex during REM sleep explains the disinhibition of dream content, it still doesn’t tell us anything about why anyone’s brain would spend time staging that particular musical. X*"(!1"#%+#(#&'$"'$(&) (-2"35!(2"53%'!(3(5<!$"2<>(Y&2"&="2/(%) ( true, this speculation would constitute one of the classic features &) (!#%"'#"v%'("H1,3%'%'4(!&5"$*%'4/(0"b="(5"2",<(53'34"-($&( 2"-"+'"($*"(7'8'&0'>(A711&!"($*"(3'!0"2($&($*"(a7"!$%&'(P?*<( is dream content so disinhibited?” turns out to be “Because prefrontal cortical regions are atypically inactive during REM sleep.” The new question obviously becomes “Then why are prefrontal #&2$%#3,(2"4%&'!(3$<1%#3,,<(%'3#$%="cQ(J?%,-(B2"35!O> Even if scientists conclusively discover that disinhibition during dreaming is caused by low activity in the PFC, they have not necessarily gained a deeper understanding of what we dream, or why we dream what we dream. Sapolsky reframes Freud’s insight into a neurobiological state5"'$/(.7$(2"#&4'%f"!($*3$('&(2"3,(12&42"!!(*3!(.""'(53-">(:$(%!("3!<($&( question whether science’s earnest attempts to understand the relationship between schizophrenia and dreaming are merely elaborate permuta$%&'!(&) ($*"(!35"(7'3'!0"2"-(a7"!$%&'(3.&7$(*&0(,7'3#<(&##72!>(k"$(:( 86

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argue that through dreams “healthy” Americans may begin relating to $*&!"(3)i%#$"-(0%$*(1!<#*&!%!/($*7!(3112&12%3$%'4($*"(P2")235%'4Q()&2(3( productive societal use. Dream research may have the power to change the perception and treatment of schizophrenics. Schizophrenics are one of the least 7'-"2!$&&-(1&17,3$%&'!(%'($*"(D'%$"-(A$3$"!>(_'"($*%2-(&) ($*"(*&5","!!( 1&17,3$%&'(%!(!#*%f&1*2"'%#(&2(.%1&,32>(:(.",%"="($*"(-2"35()235"0&28( for schizophrenia creates an accessible narrative structure, as dreaming %!(7'%="2!3,($&(.&$*($*"(P*"3,$*<Q(3'-($*"(5"'$3,,<(%,,>(:(12&1&!"(3(#7,$72ally derived movement that uses dreaming to generate compassion for 1"&1,"(3)i%#$"-(0%$*(!#*%f&1*2"'%3>(?"!$"2'(1*%,&!&1*"2!(12&1&!"-($*"( dream-lunacy connection because dreaming is the only portal by which sane persons can enter the mind of a schizophrenic. We do not yet have enough data to deem whether McCreery’s theory holds up at a neural level, but on a societal level the dream theory builds an experiential bridge between the sane and the mentally ill. :($38"(5<!",) (3!(3(#3!"(!$7-<>(F&2($*"(13!$($0&(<"32!/(:(*3="( dreamt the same nightmare at least three times a month. This is the dream: 9%!(+'4"2!(32"(.3.<(#322&$!(%'('""-(&) (3(,%$$,"(1"",%'4>(:'!$%'#$( to groom these nibble-size nails overcomes me. Little moons snow down like pencil shavings. He gurgles because watching 1%"#"!(&) (<&72!",) ()3,,($&($*"(i&&2(%!()7'>(X*"'($*"(#7$!(."4%'($&( %'+,$23$"(!8%'>(X*"(#32$%,34"(#2"!#"'$!(32"('&$(a7%$"(!$23%4*$(3'-( they must be straight, and the blood spurts and he screams but his voice sounds far away. @72"/(230($"22&2(1"25"3$"!($*%!(-2"35>(:(35(3(5&$*"2(#7$$%'4(5<(.3.<( boy’s nails, and suddenly my obsessive-compulsive nature overcomes 5"/(3!(%$(&)$"'(-&"!(0*"'(:(!1&$(3(!1"#8(&) (-7!$(&'(5<(8"<.&32-(3'-( have to dismantle the letters, or in any number of situations. This $%5"/(:b5(-%!53'$,%'4(5<(&0'(.3.<>(?*3$($*%!(-2"35(5"3'!(3'-(*&0( %$(2"i"#$!(5<(#&'!#%&7!(3'H%"$%"!()"",!(!3)"($&(5<(23$%&'3,/(038%'4(!",)>( G'-(<"$(%'($*"()"0(!"#&'-!(3)$"2(:(K&,$(71()2&5($*3$('%4*$532"/(#&="2"-( %'(!0"3$/(*"32$(,"31%'4/(:(35($"51&232%,<(53->(Y<(5%'-b!(%534"!(*3="( 3,$"2"-(5<(1"2#"1$%&'(&) ($*"(0&2,-/(3'-(:(#3''&$(,&#3$"(2"3,%$<(35%-!$( $*"(*3f"(&) (.,&&-(3'-(+'4"2!(3'-(!&7'->(:(*3="('&$("H1"2%"'#"-(!#*%f&phrenia, but the taste of dream’s delusion supplies an invaluable substrate for empathy. 87

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Science cannot yet explain why we dream, or why we dream 0*3$(0"(-2"35>(:'($*"(!$7-<(&) (-2"35!/(3('"72&#&4'%$%="(5&-",(7!"!( phenomenological information from the subjective dreaming experience and progresses to the neuropsychological level, as opposed to the acti=3$%&'6!<'$*"!%!($*"&2<(0*%#*(5&="!()2&5(!%'4,"6,"=",(+2%'4!(%'(,"!%&'"-( brains and then speculates on dream content changes. The neurocogni$%="(5&-",(*3!(%-"'$%+"-($*3$(-2"35%'4("51,&<!($*"(,%5.%#/(1323,%5.%#( and associational forebrain regions. Defects in these regions can lead to %513%25"'$(&2($&$3,(,&!!(%'(-2"35(%534"2<(JA#%"'$%+#(A$7-<(&) (B2"35!O>( Limbic structures recruited during dreaming may underlie the nightmares and repetitious dreams observed in post-traumatic stress disorder and $"51&23,6,&."("1%,"1$%#(!"%f72"!>(l"72&$23'!5%$$"2!(32"(*%4*,<(%'i7"'$%3,( in dream content and imagery vividness; drugs involved in dopaminergic and cholinergic systems are known to alter dream content and style. The 5&-",!(-"=",&1"-($&(7'-"2!$3'-(-2"35!(*3="(%-"'$%+"-(.2&3-('"723,( trends, but are fundamentally limited. Neither schizophrenia nor dreams are fully understood by science, creating a shared vulnerability between dreamers and schizophrenics. The development of dreaming is another mystery that parallels the still-inexplicable development of schizophrenia. Dreaming is a part &) (#&4'%$%="(-"=",&15"'$($*3$(-&"!'b$(2"3#*(2",3$%="(53$72%$<(7'$%,(34"!(U( &2(W>(d=%-"'#"(%'-%#3$"!($*3$($*"('"723,('"$0&28(57!$(7'-"24&(53$723tion and myelination for dreaming to occur, and further developmental studies correlate mature visuospatial skills in children with more adultlike dreaming. Despite these general understandings, the neurocognitive model of dreaming is not mechanistic enough to explain the function of dreaming or allow us to manipulate dreams. Thus the dreamer and the schizophrenic are both frustrated by the pace and scope of reductionist science, and together advocate for a more holistic understanding. Compassion is a particular and valuable kind of knowledge. Among world cultures, American culture is one of the few without an innate mechanism or narrative that addresses the meaning and function &) (-2"35!(JF2"7-/(0*&(*3!()3,,"'(&7$(&) ()3=&2(%'(1!<#*&,&4</('&$0%$*standing). A famous philosophical quandary called the Dream Argument J#&'!%-"2"-(.<(@,3$&/(A&#23$"!/(m*73'4f%(3'-(B"!#32$"!O(1&!$7,3$"!($*3$( dreaming proves the human senses are faulty, and should weaken our $27!$(%'(&72(!"'!"!b(3.%,%$<($&(-%!$%'47%!*(."$0""'(2"3,%$<(3'-(%,,7!%&'>(:'( his Meditations on First Philosophy(B"!#32$"!(02%$"!/(P?*3$"="2(:(*3="(3#cepted until now as most true has come to me through my senses. But 88

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&##3!%&'3,,<(:(*3="()&7'-($*3$($*"<(*3="(-"#"%="-(5"/(3'-(%$(%!(7'0%!"($&( $27!$(#&51,"$",<($*&!"(0*&(*3="(-"#"%="-(7!("="'(&'#">Q(?*"'(:(038"( )2&5(3('%4*$532"/(:(13'%#(."#37!"(:('&(,&'4"2(8'&0(0*3$(132$(&) (5<!",) ( :(#3'($27!$>(X*"(B2"35(G2475"'$("H1,3%'!(5<(13'%#> Consider that American intolerance towards mental illness may stem from the absence of a dominant cultural structure with which to process dreams. Without an established role for dreams, our culture has no way to respond to the huge existentialist doubts produced by the Dream Argument. Even if we cannot verbalize the Dream Argument, %$(23%!"!(%''3$"(a7"!$%&'!(0"(3,,(3!8(3$(!&5"(1&%'$n(*&0(-&(:(8'&0($*%!( 0&2,-(%!(2"3,c(?*3$(-%!$%'47%!*"!(2"3,%$<()2&5(%534%'3$%&'c(9&0(-&(:( 8'&0(3,,(&$*"2(1"&1,"(32"("H1"2%"'#%'4($*"(0&2,-($*"(!35"(03<(:(-&c( Without a forum for dreams, the Dream Argument creates an internal, unvoiced anxiety about the solidness of reality, a subconscious fear that :(.",%"="(%'#2"3!"!(!$%453$%f3$%&'(&) ($*"(5"'$3,,<(%,,>(X*2&74*(-2"35!/( â&#x20AC;&#x153;healthyâ&#x20AC;? individuals can resonate emotionally with the insane. This commonality may serve to decrease stigma towards those with mental illness and encourage those who need help to ask. A recent study in the Annals of Family Medicine reported that patients most in need of medical attention for mental health are least likely to seek that attention because they 32"(3)23%-(&) (*&0($*"<(0%,,(."(1"2#"%="-(JC",,O>(X*"2")&2"/("="'(%) (-2"35( $*"&2%"!(&) (!#*%f&1*2"'%3(43%'('&()72$*"2(!%4'%+#3'#"(%'('"72&.%&,&4</( :(.",%"="($*"<(#3'(."#&5"(3($&&,()&2(*"3,%'4(3'-(5%$%43$%'4($*"(5%!$2"3$ment of the mentally ill.

The Princeton Journal of Bioethics

Works Cited Bell RA, Franks P, Duberstein PR, et al. Suffering in silence: reasons for not disclosing depression in primary care. Ann Fam Med. LM[[RWJZOnNeWzNN\> Descartes, René, and John Cottingham. E#-('%'(.,+$.,$7&+'$:"(*.+.:"<L$1('"$ selections from the Objections and Replies. Cambridgeshire, Cambridge D'%="2!%$<(@2"!!/([WU\>(@2%'$> Domhoff, William G. !"#$+)(#,'(7)$+'5-<$.2 $-&#%9+L$,#5&%*$,#'1.&N+=$).?,('(0#$ development, and content analysis. Washington, DC: American Psychological Association, 2003. Print. Freud, Sigmund. An Outline of Psychoanalysis. London: Hogarth Press. [WNM> Gottesmann, Claude. “Dreaming and Schizophrenia: A Common Neurobiological Background?” Medical Science (Paris)(LL>L(JLMM\On(LM[6 205. Print. Gottesmann, Claude. “The Dreaming Sleep Stage: A New Neurobiological Model of Schizophrenia.” Neuroscience([NM>N(JLMM\On([[MZ6 1115. Print. 9&))53'/(S3,1*(d/(D,%(V23!"53''/(S3,%$f3(V7"&247%=3/(B&'3,-(I7%'lan, Douglas Lane, and Risto Mikkulainen. “Using Computa$%&'3,(@3$%"'$!($&(d=3,73$"(:,,'"!!(Y"#*3'%!5!(%'(A#*%f&1*2"'%3>Q( Biological Psychiatry(\W>[M(JLM[[On(WW]6[MMZ>(@2%'$> Jung, Carl. The Psychology of Dementia Praecox, translated by F. Peterson and A.A. Brill. New York: The Journal of Nervous and Y"'$3,(B%!"3!"(@7.,%!*%'4(E&513'<>([WMW> Y#E2""2</(E*32,"!>(PB2"35!(3'-(@!<#*&!%!n(G(l"0(`&&8(3$(3'(_,-(9<pothesis.” Oxford Forum: Psychological Paper([(JLMMUOn([6ee>(@2%'$> McCreery, Charles. Hallucinations and arousability: pointers to a theory &) (1!<#*&!%!>(:'(E,32%-4"/(V>(J"->On(Schizotypy, Implications for Illness and Health>(_H)&2-n(_H)&2-(D'%="2!%$<(@2"!!(J[WW]O>(@2%'$> A31&,!8</(S&."2$>(P?%,-(B2"35!(•(Y"'$3,(9"3,$*(•(B:AE_;dS(Y343zine.” Science and Technology News, Science Articles | Discover Magazine

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Prenatal Genetic Enhancement: Proving Our Obligation (Draws from authors Savulescu, Kamm, and Daniels) Lexi Antunez ’14 Duke University

f all the cutting-edge issues that bioethicists face today, few are as complicated and challenging as that of genetic enhancement. When dealing with these medical technologies, which can change a myriad of aspects of our phenotypes through genetic manipulation, the a7"!$%&'(&) (0*"$*"2(0"(32"(5&23,,<(K7!$%+"-($&("51,&<($*"%2(7!"(23%!"!( 3('75."2(&) (1*%,&!&1*%#3,(#&'!%-"23$%&'!>(:'($*%!(131"2/(:(3247"($*3$( 4"'"$%#("'*3'#"5"'$(%!('&$(&',<(K7!$%+"-/(.7$($*3$(7'-"2(#"2$3%'(!%$73$%&'!/(%$(%!(&.,%43$&2<>(:(0%,,(."4%'(.<(",3.&23$%'4($*"(-"+'%$%&'(&) (4"'"$%#( enhancement and then stipulating the ethical requirements that must ."(&.!"2="-(%'(&2-"2()&2(%$($&(1"25%!!%.,">(_'#"(:(*3="("!$3.,%!*"-($*"( 5&23,(K7!$%+#3$%&'!()&2(4"'"$%#("'*3'#"5"'$/(:(0%,,(-",="(%'$&(3($0&6!$"1( 32475"'$($&(!*&0(0*<(0"(*3="(3(-7$<($&(7!"($*%!($"#*'&,&4<>(:(0%,,(!*&0( that enhancement is not distinct from treatment, so it follows that the ethics of enhancement should mirror the practice of obligatory medical care for disease. The terminologies of “normal” and “ideal” refer to the conceptions of human traits in society. The “normal” describes the level of human functioning, capabilities, capacities, etc. that most people are thought to currently possess. The “ideal” describes these attributes if genetic enhancement were to be instituted in society, in the manner that :(0%,,(!1"#%)<(.",&0/(!&($*3$(*753'!(0&7,-(*3="(%'#2"3!"-(&2(%512&="-( 1&0"2!(&) (#&4'%$%&'/(1*<!%#3,(!$2"'4$*/(*"3,$*/("$#>(:'(3(4"'"$%#3,,<( enhanced human world, one would observe a shift in the conceptual boundary between “normal” and “ideal”. Enhancement technology 0&7,-($*7!(."(3##&513'%"-(.<(0*3$(:(#3,,(3(!*%)$%'4('&253,(,%'"> ?*3$(%!(4"'"$%#("'*3'#"5"'$c(:$(%'=&,="!($*"(53'%17,3$%&'(&) ( the genotype of a person prenatally or as an adult, through retroviral genetic intervention. The former raises the greater ethical contention, because prenatal enhancement is complicated by the issue of paren$3,(-"#%!%&'6538%'4>(:(3247"($*3$(132"'$!(*3="(3(2%4*$($&(538"(4"'"$%#( enhancement decisions for their children for two main reasons. First, 91

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$*"<(3,2"3-<(*3="(3(42"3$(%'i7"'#"(&'($*"%2(#*%,-b!(4"'"$%#!(!%'#"(%$(%!($*"%2( choice of spouse that will determine the genetics of the child. This is a fundamental choice that must be made for every child and automatically confers a great degree of control over the childâ&#x20AC;&#x2122;s genetics to the parent. Second, parents environmentally condition their children anyway in their 71.2%'4%'4!(3'-($*"2"(%!(!%4'%+#3'$(%'i7"'#"(%'*"2"'$(%'($*%!(12&#"!!/(!&( genetic decisions are functionally the same. That is to say, the relationship between parent and child inherently allows the parents to make deci!%&'!($*3$(%'i7"'#"($*"%2(#*%,-2"'b!(1*<!%#3,(3'-(5"'$3,(#*323#$"2%!$%#!/( so genetic enhancement is not giving parents a novel sort of power or authority. Now that we have established the great degree of parental procreative autonomy that exist with or without genetic enhancement, we will stipulate that it exists only to the extent that it follows the conditions outlined below. The most persuasive objections to enhancement come from practical concerns, and not as much from the theoretical or philosophical arena, so we need to provide for these potential objections by !$2%#$,<(-"+'%'4($*"($<1"(&) ("'*3'#"5"'$(0"(0%,,(."(-%!#7!!%'4>(X*"2"(32"( four key caveats that must be applied to genetic enhancement to make it permissible. X*"(+2!$(2",3$"!($&(12"="'$%'4(-%!#2%5%'3$%&'R($*"(4"'"$%#("'hancements must be available to all people who want them and the traits that are endowed must be of a fair nature. That is to say, an â&#x20AC;&#x153;unreasonablyâ&#x20AC;? large power is not conferred upon the person so that they could dominate others; the author Julian Savulescu uses the example of mind 2"3-%'4(3!(!7#*(3(1&0"2(%'(*%!(131"2(V"'"$%#(:'$"2="'$%&'!(3'-($*"(d$*%#!(&) (d'*3'#"5"'$(&) (9753'(C"%'4!>(X*"(!"#&'-(a73,%+#3$%&'(-"3,!( with the safety of the intervention to the individual receiving it and to the people around them. Safety is here construed to mean in both the technological and economic sense; we must ensure that the science behind genetic enhancements is sound enough to provide for the safety of the subjects, within reasonable limits of our knowledge, and also that the development and distribution of the enhancements does not place an undue economic burden on the society, especially its poorest members and the ones who opt out of the enhancements, to keep them safe from unreasonable demands of the new technology. Thirdly, the qualities that we are giving people must be universal goods, meaning that, to the best of our knowledge, culturally and looking into the future, these traits are valuable regardless of the kind of life a person chooses to live. Such traits include intelligence, memory, and impulse control. Finally, 92

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these enhancements must not infringe upon the self, so that a person is still responsible for actions and no compulsions are introduced to their being, a compulsion being an uncontrollable tendency or desire, the introduction of which would harm the individual in evident ways. Given the above ideas, we have established that genetic enhancements that take place within these parameters are permissible and ethical, and have also '7,,%+"-($*"(5&!$(!"2%&7!(&.K"#$%&'!($&($*%!(123#$%#">(((( l&0(:(0%,,("!$3.,%!*($*3$($*"2"(%!('&(-%!$%'#$%&'(."$0""'($2"3$ment and enhancement, or at the very least that it is an irrelevant difference, so that we may then move on to showing that we have some obligation to human enhancement. The central argument when it comes to understanding the extreme similarity between treatment and enhancement is assessing the well being of an individual as it is compared to the normal. That is to say, we should, and presently do, focus on how far a personâ&#x20AC;&#x2122;s state of being is from the most optimal level of functioning and "'*3'#"5"'$(3=3%,3.,"($&($*"5(&'($*"(!#3,"(3'-(0%$*($*"(!$%17,3$%&'!(:( have already enumerated. Currently, we treat disease because sick people are those least like the normal that we have the power to improve, but when the ideal becomes the new normal because of advances in genetic enhancement technology, suddenly there is an entirely new group of people who are abnormal and whose lives could be vastly improved by bringing them closer to the new normal. What matters is the impact a condition has on an individualâ&#x20AC;&#x2122;s life, and we should prioritize a focus on the worst cases where people deviate from the normal because of -"+#%"'#%"!(3'-('&$('"#"!!32%,<(-%!"3!"!>(?%$*($*%!()&#7!/(%$(0%,,(2"3-%,<( become evident that this distinction is irrelevant in all practical and com13!!%&'3$"(!"'!"!>(B230%'4()2&5(3(1%"#"(02%$$"'(.<(F23'#"!(q355/(:!( X*"2"(3(@2&.,"5(0%$*(d'*3'#"5"'$c/(%) (<&7(-"+'"($2"3$5"'$(3!(0*"'/( â&#x20AC;&#x153;we get rid of things in nature that interfere with other parts of nature $*3$(32"(%$!(4%)$!(J%>">(4&&-($*%'4!OQ(Jq355O/($*"'()7'#$%&'%'4($*3$(%!(,"!!( than ideal, but not necessarily what we classify as disease, can suddenly be categorized as needing treatment. So the line dividing treatment and enhancement disappears. Looking to an example put forth by Norman Daniels in his piece Normal Functioning and the Treatment-Enhancement Distinction, if there is one child who will be drastically shorter than average because of a tumor that limits his growth hormone secretion, and another child who will be the same abnormally short height, but only because his parents are shorter than normal so his genes code for less growth hormone naturally, we suddenly see the strange nature of how we 93

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-230(,%'"!(."$0""'(-%!"3!"(3'-(P'3$723,Q(%'!7)+#%"'#%"!>(:'($*%!(#3!"($*"( line is at a given stage of the growth hormone secretion pathway and the 32.%$232%'"!!(&) ($*%!(#,3!!%+#3$%&'(%!(4,32%'4,<(&.=%&7!>(G'&$*"2(#&5132%son that throws light on the randomness of the treatment-enhancement distinction is the case of a person who suffers from extreme, socially crippling shyness versus someone who suffers from moderately intense eczema. The former is not a disease, as the latter is, but the former certainly has a greater negative impact on the personâ&#x20AC;&#x2122;s life, but happens to ."($*"(#&'-%$%&'($*3$(0&7,-('"#"!!%$3$"(4"'"$%#("'*3'#"5"'$($&(."(+H"->( Thus we have found a new standard by which to distinguish, or in this case not distinguish, treatment and enhancement, because the problems people face in these two examples are not fundamentally different enough to be thrown into different categories, especially if that categorization prevents one from receiving medical care because it does not meet $*"(3112&12%3$"(#2%$"2%3>(:(0%,,(3--2"!!($*%!(%-"3(&) ($*"($2"3$5"'$6"'*3'#"ment line mapping onto the medical obligation line a bit further in the '"H$(13234231*>(:$(%!(#&'#"%=3.,"($*3$(&11&'"'$!(0%,,(#%$"(&$*"2(%'!$3'#"!( wherein a disease is more serious than a limitation, and, under this approach, treatment seems to be quite different from enhancement, since $*"(,3$$"2(%!(&)$"'(13%'$"-(3!(7''"#"!!32<(%'(#&5132%!&'>(C7$(:(35('&$( saying that in this sort of case the person with the â&#x20AC;&#x153;diseaseâ&#x20AC;? should not ."(12%&2%$%f"-()&2($2"3$5"'$/(a7%$"($*"(&11&!%$">(:(35(1&%'$%'4(&7$(!%51,<( $*3$($*"(K7!$%+#3$%&'()&2(3#$%'4(%'(.&$*(#3!"!/($2"3$5"'$(3'-("'*3'#"ment, is the same and those prioritized should be the most abnormal, $*&!"(0*&(32"(5&!$(3)i%#$"->(d="'(%) (<&7(-&('&$()7,,<(.",%"="($*3$($*"2"( %!('&(-%!$%'#$%&'(."$0""'($2"3$5"'$(3'-("'*3'#"5"'$/(3,,(:('""-($&(*3="( shown is that it is not an important distinction to be made when dealing with people who are suffering. We seek to improve lives and should be doing so based on how much improvement those lives need to be '&253,/(0*"$*"2($*"<(32"(3)i%#$"-(.<(-%!"3!"(&2(!&5"(&$*"2(32.%$232%,<( labeled shortcoming. Since we have shown that treatment and enhancement are insuf+#%"'$,<(-%))"2"'$($&(-"!#2%."($*"5(3!(!7#*(&2(3$$3#*(-%))"2"'$(&.,%43$%&'( based upon this distinction, we will now establish that some forms of "'*3'#"5"'$(32"(3(53$$"2(&) (-7$<($&(*753'8%'->(X*%!(3!!"2$%&'(i&0!( )2&5($0&(03<!(&) ($*%'8%'4/($*"(+2!$()2&5(12"#"-"'$(3'-($*"(!"#&'-()2&5( reasoning similar to that which we have already explored in the preceding paragraph. First, we must accept that, under the medical status quo, as Daniels describes at length, there is an obligation to provide treatment 94

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for people with diseases. Thus we have shown that there is no difference between treatment and enhancement, and we have set the precedent that we have a duty to treat diseases, so it follows that we would have a duty to enhance. ?"(*3="(3,!&(3,2"3-<(!*&0'($*3$(0"(#3'(!*%)$($*"(-"+'%$%&'( of normal to include ideal characteristics with genetic enhancement, so this is the next logical extension, that when disease must be treated and it is no different from less-than-normal function, then enhancement is obligatory too. When the treatment-enhancement line disappears, it is much easier to see how medical obligation should be distributed. Moreover, the reason that we are obligated to treat disease is because it interferes with a person obtaining the best possible quality of life. Therefore, by the same sort of logic that lead us to denounce the difference between treatment and enhancement, when a better quality of life becomes available through genetic enhancements, our duty to help people achieve the best possible lives becomes more than treating disease and helping them reach the current normal, because we have a new 5%'%575("H1"#$3$%&'6($*"(%-"3,>(?"(+'-(-%!"3!"(.3-(."#37!"(%$(12"="'$!( us from living the best possible lives, but when the ideal is achievable; our limitations that are not technically disease also prevent us from attaining the best lives. We have a duty to enhance because we have a duty to treat and they are fundamentally the same thing. We also have a duty to enhance because we have a responsibility to help people live the best possible lives, which is only possible through enhancement. Again, both of these assertions are assuming the type of widely available, controlled enhancement we have been discussing since the beginning and also the hierarchy of duties based on how much the individualâ&#x20AC;&#x2122;s life is affected by the condition in question. We began by enumerating the stipulations that make genetic enhancement permissible in an ethical framework, we then discussed at length how treatment and enhancement are not different when an individualâ&#x20AC;&#x2122;s condition is compared to the normal, or ideal, )7'#$%&'%'4(&) (3(1"2!&'/(3'-(+'3,,<($*%!(,"-(7!($&(!""($*3$("'*3'#"5"'$(%!( an obligation by examining medical precedent and by the reasons behind our treatment of disease.

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Works Cited Daniels, N., â&#x20AC;&#x153;Normal Functioning and the Treatment-Enhancement B%!$%'#$%&'/Q(E35.2%-4"(I732$"2,<(WJeO/(LMMM/(11>(eMW6eLL>( q355/(F>/(P:!(X*"2"(3(@2&.,"5(0%$*(d'*3'#"5"'$/Q(G5"2%#3'(p&72'3,( &) (C%&"$*%#!(ZJeO/(LMMZ/(11>(Z6[N>( A3=7,"!#7/(p>(PV"'"$%#(:'$"2="'$%&'!(3'-($*"(d$*%#!(&) (d'*3'#"5"'$(&) ( 9753'(C"%'4!/Q(%'(A$"%'.&#8/(C(J"->O/(X*"(_H)&2-(93'-.&&8( &'(C%&"$*%#!/(_H)&2-/(_H)&2-(D'%="2!%$<(@2"!!/(LLM\/(11>(ZL\6 535.

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Gene therapy: lessons learned from the case of Jesse Gelsinger Akash A. Shah â&#x20AC;&#x2122;13 Duke University

ver the past two decades genetics and genomics have shown much promise in transforming medicine as we know it. However, at least for the time being, this promise is yet to be realized. From genome-wide association studies to personalized medicine, we are yet to truly capitalize on the vast amount of clinically relevant information that our genome encodes. (_'"(4"'&5%#($"#*'&,&4<($*3$(*&,-!(57#*(12&5%!"(%!(4"'"($*"231<>((G!( with other genomic technologies, the promise of gene therapy is yet to be realized. Furthermore, the serious adverse events that have occurred in the past cannot be ignored.1 The death of Jesse Gelsinger on Septem."2([]/([WWW(03!($*"(-328"!$(*&72(%'($*"(*%!$&2<(&) (4"'"($*"231<>2 The Gelsinger tragedy brought to the forefront the numerous safety, regula$&2</(3'-("$*%#3,(#&'#"2'!(%'($*%!(+",->3((:'(&2-"2()&2(4"'"($*"231<($&( move forward and help transform medical care, these concerns must be allayed. Before going deeper into the multifaceted problems associated with gene therapy at the time of Jesse Gelsingerâ&#x20AC;&#x2122;s death, it is important $&(+2!$(43%'(3(-""1"2(7'-"2!$3'-%'4(&) ($*"(!#%"'#"(."*%'-(4"'"($*"231<>(( The basic premise of gene therapy is really quite simple: if a deleterious allele of a gene is causing the disease phenotype, then removing the deleterious allele and replacing it with a normally functioning allele should cure the disease.3((:$(!&7'-!(!$23%4*$)&2032-("'&74*>((G!(0%$*(5&!$(4"netic technologies, though, where it becomes tricky is in the application. _'"(&) ($*"(.%44"!$(*72-,"!($&(&="2#&5"()&2(!7##"!!)7,(4"'"($*"231<(%!( developing a technology capable of gene transfer.4 There is currently a ,3#8(&) (")+#%"'$('&'6$&H%#(4"'"6-",%="2<(!<!$"5!>((X*"(%-"3,(4"'"($*"231<( ="#$&2(!*&7,-(."("3!%,<(12&-7#"-/(%557'&,&4%#3,,<(%'"2$/($324"$"-(!1"#%+cally at the desired, and able to hold large stretches of genetic material. There are two categories of currently available vectors: viral and nonviral. Since viruses have evolved to deliver genes to target cells, viruses have a genetic component that is essential to viral propagation.4, 5 They 97

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would seem to be perfect vectors for gene therapy. Such viral vectors can be constructed with the insertion of the therapeutic gene of interest. To minimize immune response, most vectors are designed to prevent production of viral proteins after transduction into the target cell. Special attention must also be paid to the type of viral vector used. Socalled â&#x20AC;&#x153;integrating vectors,â&#x20AC;? such as retroviral and adeno-associated viral vectors, insert themselves into the viral genome and therefore provide permanent expression of the therapeutic gene. Non-integrating vectors, on the other hand, provide only transient expression of the therapeutic gene, since they do not integrate into the host genome.4, 5 ( G!(3(1&%'$(&) (#,32%+#3$%&'/(3-"'&=%23,(="#$&2!(32"(-%))"2"'$()2&5( 3-"'&63!!&#%3$"-(=%27!(="#$&2!(JGG;!O>((GG;!(32"(!%'4,"6!$23'-"-(BlG( =%27!"!($*3$(2"a7%2"(3-"'&=%27!(&2(*"21"!=%27!(*",1"2!($&(2"1,%#3$">((GG;( vectors have most of their viral DNA deleted, and can only hold a $23'!4"'"(0%$*(3(53H%575(!%f"(&) (N>](8.>((F72$*"25&2"/(GG;(="#$&2!( randomly integrate into the host genome at double stranded break sites.5 Adenoviral vectors, on the other hand, are great examples of nonintegrating viral vectors. These vectors are not without risks. As with 3,,(=%23,(="#$&2!/($*"($&H%#%$<(&) ($*"(="#$&2(132$%#,"!(%!(3(!%4'%+#3'$(!3)"$<( concern. Even inactivated recombinant adenoviral vectors can provoke immune system T-cell responses against viral proteins. This response is particularly relevant for adenoviral vectors since they do not integrate, and so become lost with cell division and subsequent DNA degradation due to cytotoxic T-cell responses against viral proteins.N/(\ Another !*&2$#&5%'4(&) (3-"'&=%23,(="#$&2!(%!($*"%2(,3#8(&) ($324"$($%!!7"(!1"#%+#%$<>(( Furthermore, since adenoviral vectors are non-integrating, the therapeutic gene is only expressed for a short period of time.5 As a result, more P%')"#$%&'!Q(."#&5"('"#"!!32<($&(3#*%"="($*"(-"!%2"-($*"231"7$%#(."'"+$>(( Despite these shortcomings, adenovirus is a particularly attractive vector due to its ease of production as well as its capacity to hold large genes.5 For these reasons, adenoviral vectors were used in the treatment of Jesse Gelsinger. As it turned out, however, the problems of toxicity and lack &) ($324"$($%!!7"(!1"#%+#%$<(!*&7,-('&$(*3="(.""'(%4'&2"-> ( p"!!"(V",!%'4"2(!7))"2"-()2&5(&2'%$*%'"($23'!#32.35<,3!"(J_XEO( -"+#%"'#</(3(232"(4"'"$%#(-%!"3!"($*3$(-%!271$"-(*%!(.&-<b!(3.%,%$<($&(-"toxify ammonia, a natural but toxic product of protein breakdown. An x6,%'8"-(-%!"3!"/(_XE(-"+#%"'#<(7!73,,<(,"3-!($&('"72&,&4%#3,(!<51$&5!( ranging from seizures to mental retardation. However, since Jesse had a 98

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mild form of the disease, he was able to control it with proper diet and drugs.e/(] He was enrolled in a gene therapy trial conducted by a team &) (2"!"32#*"2!(3$($*"(D'%="2!%$<(&) (@"''!<,=3'%3b!(:'!$%$7$"()&2(9753'( V"'"($*"231</(3'-(."43'($2"3$5"'$(&'(A"1$"5."2([e/([WWW>((X*"($"35/( led by James M. Wilson, injected Jesse with adenoviral vector particles, each of which contained a therapeutic gene designed to correct Jesse’s genetic defect. Within hours of adenoviral vector administration, Jesse had developed complications. Within four days of vector administration, p"!!"(V",!%'4"2(-%"->((:$(03!($*"(+2!$(-"3$*($*3$(03!(-%2"#$,<(#37!"-(.<( gene therapy.N/(U Jesse’s tragic death was both a familial tragedy and a huge setback for $*"(+",-(&) (4"'"($*"231<>((:$(.2&74*$(0%$*(%$(3(*&!$(&) (a7"!$%&'!(2"432-ing the medical decisions made by the University of Pennsylvania team. _'"(!7#*(a7"!$%&'(03!(0*<($*"(@"''($"35(*3-(%'K"#$"-(p"!!"(0%$*(!7#*(3( massive dose of adenoviral vector particles, targeting his liver. Jesse was %'K"#$"-(0%$*(eU($2%,,%&'(!7#*(=%27!(132$%#,"!/($*"(,324"!$('75."2(&) (=%27!( particles ever administered in a gene therapy trial. Given the toxicity of adenoviral particles, it is unclear why the team injected Jesse with a dose larger than any previously administered. Even with such a large dose, &',<([^(&) ($*"($*"231"7$%#(4"'"!(3#$73,,<(2"3#*"-($*"($324"$(#",,!>((X*"( 3-"'&=%23,(="#$&2(7!"-(3,!&(,3#8"-($324"$(!1"#%+#%$<>((:$(%'=3-"-('&$(&',<( the liver, but multiple other organs. Furthermore, why did the researchers continue to increase the adenoviral vector dose even when other 13$%"'$!(!*&0"-($&H%#%$<(3$(,&0"2(,"=",!c((I7"!$%&'!(3,!&(32&!"(3!($&(0*<( Jesse’s response to the vector was not foreseen. Adenovirus is known to trigger an immune response, and if the Penn team continued to raise the dose, it should have come as no surprise that such an immune reaction occurred.e/(U/(W Another pertinent question is why Jesse was in the study to begin with. This question can be framed in two different ways. First, why was he considered to be medically stable enough to participate? His liver was not functioning well enough at the time of the adenoviral treatment for him to be participating in the study. More alarmingly, Jesse’s ammonia ,"=",!(0"2"(eM^($&(\M^(*%4*"2($*3'($*"(,"=",(342""-(71&'($*"(@"''($"35( and the Food and Drug Administration as being safe. Yet, the Penn team still decided to have Jesse undergo treatment with the adenoviral vector.e/(W Whether or not this was a medically sound decision is debatable; however, it was certainly against the agreed protocol. A second 99

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aspect of this question is why Jesse had actually signed up for the study. The experimental procedure that Jesse volunteered for was not designed $&(."'"+$(*%5>((:$(03!($&($"!$($*"(!3)"$<(&) (3($2"3$5"'$(%'$"'-"-()&2(7!"( &'(%')3'$!(0%$*(3()3$3,()&25(&) (_XE(-"+#%"'#<>3 ( :$(%!($*%!(,3$$"2(1&%'$($*3$(%!(&) (132$%#7,32(%'$"2"!$>((?*<(03!(p"!!"( %'($*"(!$7-<(%) (*"(*3-('&(#*3'#"(&) (."'"+$$%'4()2&5(%$c((X*"(D'%="2!%$<( of Pennsylvaniaâ&#x20AC;&#x2122;s own bioethicist, Art Caplan, is known to have said that P$*"2"(03!('"="2(3(#*3'#"($*3$(3'<&'"(0&7,-(."'"+$()2&5($*"!"("H1"2%ments.â&#x20AC;?U((:$(-"+"!(2"3!&'($&($38"(&'(7''"#"!!32</(3'-(1"2*31!()3$3,/(2%!8!( $&(132$%#%13$"(%'(3(!$7-<($*3$(0%,,('&$("="'(,"3-($&(3(."'"+$(%) (132$%#%13'$!( are not at acute, life-threatening risk. After all, Jesse possessed only a 5%,-()&25(&) (_XE(-"+#%"'#</(3'-(#&7,-(,%="(3(2",3$%=",<('&253,(3'-( *"3,$*<(,%)"(0%$*($*"(12&1"2(-274!(3'-(-%"$>((:'-""-/($*%!(03!($27"(&) ( all the volunteers in the study. People who were able to live relatively unfettered lives with conventional treatment were put at risk in a study $*3$(03!('&$(-"!%4'"-($&(."'"+$($*"5>((?*</($*"'/(-%-(p"!!"(#&'!"'$($&( 132$%#%13$"(%'($*"(@"''(!$7-<c((:(3247"($*3$(*"(53<(*3="(12&=%-"-(#&'sent, but he certainly did not provide informed consent. While he may *3="(8'&0'($*3$(3(-2353$%#(."'"+$()&2(*%5(03!(7',%8",</(%$(%!(-&7.$)7,( that he had been given information on earlier failed treatments. Thus, it is questionable that Jesse truly understood what he was consenting to.10 The informed consent form that Jesse and the other participants signed was actually different from the one that was initially approved. This new form did not mention the fact that Rhesus monkeys had died in a previ&7!(!$7-<(7'-"2$38"'(.<($*"(:'!$%$7$"()&2(9753'(V"'"(X*"231<>3 The director of the institute, James Wilson, responded to this criticism by explaining that he and his team did not reveal this information to the participants since the monkeys were models for a different disease and received a different therapeutic gene.11 This is an unsatisfactory reason for withholding the information. Even if the treatment of the monkeys was for a different disease and had a different therapeutic gene, it was !$%,,(47%-"-(.<($*"(!35"(12%'#%1,"!(3!($*"(_XE($2%3,>((_'"(0&'-"2!(0*<( the safety of and provision of all information to the trial participants were not the highest priorities for the Penn team. Perhaps a look at the +'"2(-"$3%,!(&) ($*"(!$7-</(3'-($*"(!$7-<b!(!1&'!&2%'4(%'!$%$7$%&'/(0%,,(!*"-( some light on this mystery. The adenoviral vectors used in Jesseâ&#x20AC;&#x2122;s trial were provided by a #&513'<(#3,,"-(V"'&=&/(:'#>((X*"()&7'-"2(&) ($*%!(#&513'<(03!('&'"( 100

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&$*"2($*3'(p35"!(?%,!&'/($*"(-%2"#$&2(&) ($*"(@"''(:'!$%$7$"()&2(9753'( Gene Therapy.12 Genovo had the rights to any discoveries that Wilsonâ&#x20AC;&#x2122;s laboratory at Penn made. Furthermore, while Genovo had access to any discoveries made in the lab, it minimized risks by allowing the lab to run #,%'%#3,(!$7-%"!(.")&2"(%$(-"#%-"-($&(%'="!$>((V"'&=&(3,!&(2"#"%="-(we]( 5%,,%&'()2&5(C%&4"'>((X*%!(5&'"<(538"!(71(LM^(&) ($*"(@"''(%'!$%$7$"b!( budget.3((V"'&=&(6(3'-(p35"!(?%,!&'/($*"(:'!$%$7$"()&2(9753'(V"'"( X*"231</(3'-($*"(D'%="2!%$<(&) (@"''!<,=3'%3(z(*3-(3(53!!%="(+'3'#%3,( interest in the success of this gene therapy trial. Due to the fact that Genovo could wait until Wilsonâ&#x20AC;&#x2122;s lab had results, the company was al5&!$(%557'"()2&5(3'<(2%!8!(3!!&#%3$"-(0%$*($*"()3%,72"(&) ($*"($2%3,>((:$(%!( $*7!(,%8",<($*3$(V"'&=&(0&7,-(."(3.,"($&(."'"+$()2&5(7''"#"!!32<(2%!8!( that could potentially result in a success: a high-risk, high-reward sce'32%&>((X*%!(03!(&.=%&7!,<(3(53K&2(#&'i%#$(&) (%'$"2"!$/(3'-('&'"(&) ($*"( 132$%#%13'$!(%'($*"(_XE($2%3,(8'"0(3.&7$(%$>(((((( Given the toxicity of most adenoviral vectors and the deaths of Rhesus monkeys in previous studies undertaken by the researchers, it is a wonder that such a study in humans could ever be approved.U((:'()3#$/( $*"(@"''(12&$&#&,(03!('&$(3112&="-($*"(+2!$($%5">((?*"'(+2!$(12"!"'$"-( $&($*"(l:9b!(S"#&5.%'3'$(BlG(G-=%!&2<(#&55%$$""(JSGEO/($*"(!#%"'tists on the committee were reluctant to approve the protocol.3 How"="2/(%'([WWZ/(932&,-(;3257!(z($*"'(-%2"#$&2(&) ($*"(l:9(z(!$2%11"-($*"( RAC of its authority to govern gene therapy protocols. According to $*"(l:9/($*%!(03!(-7"($&(2"-7'-3'#%"!(%'($*"(!<!$"5>2 Regardless of the reason for this, it was a grave mistake. The RAC lost voting power and became, for all intents and purposes, a forum for discussion rather than a #&55%$$""(0%$*(3#$73,(1&0"2>((:'()3#$/($*"(12&$&#&,(0%$*(0*%#*($*"(SGE( was not comfortable, and which the FDA approved, is the one that led to p"!!"(V",!%'4"2b!(-"3$*>((:'-""-/($*"(SGE(-%-('&$("="'(2"#"%="('&$%#"(&) ( this protocol change.2, 13 ( :'(3--%$%&'($&($*"("53!#7,3$%&'(&) ($*"(SGE/($*"2"(03!(3(12&.,"5( with the then-policy of the FDA regarding the reporting of serious adverse events. Reporting of a serious adverse event was not necessary if %$(0"2"(3'("H1"#$"-("="'$/(3##&2-%'4($&($*"(FBG>((_',<(%) (3'("="'$(0"2"( serious and unexpected must it have been reported.13 Even with this !7212%!%'4,<(,3H('&$%+#3$%&'(1&,%#</($*"(@"''(2"!"32#*"2!()3%,"-($&(2"1&2$( p"!!"b!(#&51,%#3$%&'!($&($*"(l:9>(((( What is especially worrisome is that this kind of misconduct was 101

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'&$('"#"!!32%,<(7'%a7"($&($*"(@"''($"35>((B7"($&($*"(%'*"2"'$(i30!(%'( the review system, some of which still remain, it may well be the case $*3$($*"(V",!%'4"2($234"-<(03!(K7!$($*"(+2!$(&) (53'<(!7#*($234"-%"!>((X&( avoid this, certain changes in both the review system and the culture of 3#3-"5%3(57!$(."(53-">((_'"(&) ($*"(5&!$(%51&2$3'$(3#$%&'!($&($38"( is to change the disclosure policies in clinical trials. Safety concerns 3'-("H1"#$"-(+'3'#%3,(43%'!(57!$(."(2"1&2$"-($&($*"(!$7-<(132$%#%13'$/( *%!()35%,<(3'-($&(7'#&'i%#$"-(*"3,$*#32"(12&=%-"2!(0*&!"(&',<(%'$"2est is in the protection of their patients. While this seems obvious, this practice is not as widespread as one may think. Many researchers stick $*"(7'!3=&2<(-"$3%,!(&) (3(!$7-<(%'(!#%"'$%+#($"25%'&,&4<($*3$($*"(3="234"(2"3-"2(53<(*3="(-%)+#7,$<(7'-"2!$3'-%'4>((G!(3(2"!7,$/($*"(2"3-"2( will dismiss the complex consent form as mere paperwork. While this 53<(,"43,,<(#&7'$(3!(%')&25"-(#&'!"'$/(%$(-&"!('&$(2"!&,="($*"(#&'i%#$( of interest from an ethical standpoint. The researcher must divulge this information directly to the research subject. Given the unique and powerful trust that patients place in their physicians, it is imperative that 3'<(1*<!%#%3'62"!"32#*"2(#&'-7#$%'4(3(#,%'%#3,($2%3,(2"="3,(3'<(#&'i%#$(&) ( interest.14 ( C"$0""'([WWe(3'-([WWW/(3112&H%53$",<(W]M(!"2%&7!(3-="2!"( "="'$!(&##722"-(%'(4"'"($*"231<($2%3,!>((_',<(e](0"2"(2"1&2$"-($&($*"( l:9>15((:'(&2-"2($&(!$&1(4"'"($*"231<()2&5(."#&5%'4($*"(?%,-(?"!$(&) ( biological research, strict enforcement of reporting policy must be in 1,3#">((9&0"="2/("')&2#"5"'$(%!('&$("'&74*>((X*"(!#%"'$%+#(#&557'%$<( %$!",) (57!$(."()&2$*#&5%'4(3'-(-%!#,&!"('"43$%="(2"!7,$!>((:'(!#%"'#"/( admitting to failures is rare since failures are generally not publishable. However, this viewpoint must change if success is to be had in gene therapy. With a better understanding of risks associated with gene therapy, it is also possible to save research funds that would otherwise have been wasted.[\ Furthermore, from an ethical standpoint, not disclosing negative results risks those humans who have offered themselves for the betterment of science.[]((:$(*3!(3,!&(."#&5"(#,"32($*3$(*3=%'4(&',<( one feckless regulatory agency for an area as vast as gene therapy is not enough. Redundancy in the system provides necessary checks and balances.15 Many important changes have been made since the Gelsinger tragedy. As stated earlier, one of the most worrying aspects of gene therapy research at the time of Jesse Gelsinger was the inconsistent re102

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1&2$%'4(&) (!"2%&7!(3-="2!"("="'$!(JAGd!O>((Y3'<(AGd!(*3-('&$(.""'( 2"1&2$"-($&($*"(l:9/(.7$(3,,(*3-(.""'(2"1&2$"-($&($*"(FBG>((A%'#"( the FDA kept these SAE reports private, researchers were more will%'4($&(#&557'%#3$"(0%$*($*"(FBG>((G!(3(2"!7,$/($*"(l:9(3'-(FBG( have revised the SAE reporting requirements to make reporting more #&'!%!$"'$>((X*"(l:9(53-"(%$!(2"a7%2"5"'$!(#&'!%!$"'$(0%$*($*&!"(&) ( the FDA. Under these new guidelines, an SAE must be reported im5"-%3$",<($&($*"(FBG(3'-($*"(l:9(%) (%$(%!(3(P!"2%&7!(and unexpected and related to the study therapy.â&#x20AC;? These changes narrowed reporting requirements, making it so only the most serious SAEs were reported. The agencies hoped that by having fewer reported SAEs, they would be able to focus more on the SAEs that were reported.[U Furthermore, the RAC was given a larger role, albeit still 3-=%!&2<>((D'-"2(3'(_#$&."2(LMMM(35"'-5"'$($&(l:9(47%-",%'"!/( l:96)7'-"-(2"!"32#*"2!('""-"-($&(!7.5%$(4"'"($23'!)"2(12&$&#&,!($&( the RAC for evaluation of whether public review was needed before $*"(:'!$%$7$%&'3,(C%&!3)"$<(E&55%$$""(J:CEO(#&7,-(423'$(3112&=3,>[U :'()3#$/(&',<(3)$"2($*"(12&$&#&,(%!(2"=%"0"-/(2"=%!"-/(3'-(3112&="-(.<( $*"(!1&'!&2(&) ($*"(#,%'%#3,($2%3,/($*"(:'!$%$7$%&'3,(S"=%"0(C&32-(J:SCO/( $*"(:CE/($*"(FBG/(3'-($*"(SGE(#3'($*"(#,%'%#3,($2%3,(."(%'%$%3$"->((:'( 3--%$%&'/(0%$*%'(LM(-3<!(&) ("'2&,,5"'$(&) ($*"(+2!$(13$%"'$/($*"(_)+#"( &) (C%&$"#*'&,&4<(2"a7%2"!(!7.5%!!%&'(&) (:SC(3'-(:CE(3112&=3,/($*"( :SC(3'-(:CE(3112&="-(12&$&#&,(3'-(%')&25"-(#&'!"'$/(2"!1&'!"!($&( SGE(2"#&55"'-3$%&'!/(5&-%+#3$%&'!($&(12&$&#&,/(3,&'4(0%$*(53'<( other types of information.[W((C<(#&5.%'%'4(2"47,3$&2<(JFBGO(3'-( 3-=%!&2<(JSGEO(&="2!%4*$/(!$2&'4(2"47,3$&2<(3##&7'$3.%,%$<(%!(#&71,"-( with transparency. While this combination may create redundancy and overlap, these may help foster public trust in gene transfer research. ( ?*%,"(:(*3="(13%'$"-(3(23$*"2(4,&&5<(1%#$72"(&) (4"'"($*"231</( there is no doubt that gene therapy holds much promise for the future of medicine. Recent developments have reduced the risk involved in gene therapy treatment. The use of RNA interference based therapies is quite exciting, as it removes the risk of toxicity that plagues viral vectors, namely adenoviral vectors.21 The develop5"'$(&) ('&'6=%23,(="#$&2!/(!7#*(3!(*753'(32$%+#%3,(#*2&5&!&5"!/( %!(132$%#7,32,<(%'$2%47%'4>((D!%'4(32$%+#%3,(#*2&5&!&5"!($&(%'$2&-7#"( therapeutic genes would not require manipulation of the targetâ&#x20AC;&#x2122;s na103

The Princeton Journal of Bioethics

tive genome, eliminating the risk of deleterious events such as oncogene insertion.22((G2$%+#%3,(#*2&5&!&5"!(#3'(3,!&(#322<(57#*(,324"2(4"'"!( than most traditional vectors.23, 24((_) (#&72!"/(57#*(5&2"(2"!"32#*(%!( necessary before any of these new technologies can be applied in a clini#3,(!"$$%'4>((:'(3--%$%&'($&(2"!"32#*/(3-"a73$"("$*%#3,(!<!$"5!(57!$(."(%'( place for strict enforcement of regulations, obtaining proper informed consent, conducting thorough reviews of proposed research protocols, and general oversight of the gene therapy research community. What is most tragic about Jesse Gelsinger’s death is how easily it could have been avoided. Had such ethical systems been in place to avoid the regu,3$&2<(,31!"!(&) ($*"(@"''(_XE($2%3,!/(1"2*31!($*"(-"3$*(&) (p"!!"(V",!inger could indeed have been avoided. References Edelstein ML, Abedi MR, Wixon J. Gene therapy clinical trials world0%-"($&(LMM](z(3'(71-3$">(p(V"'"(Y"->(LMM]R(Wn(Uee6UNL> 2 (A&S",,"(S>(9753'(4"'"($*"231<>(E%2#7,3$%&'>(LMMMR([M[n("WMLe> 3 Kolehmainen SM. “The Dangerous Promise of Gene Therapy.” Gene?3$#*>(F".2732<(LMMU>( 4 (A&5%3(l/(;"253(:Y>(V"'"($*"231<n($2%3,!(3'-($2%.7,3$%&'!>(l3$72">( l&="5."2(LMMMR([n(W[6WW> 5 (k&7'4(`A/(A"32,"(@F/(_'%&'(B/(Y37$'"2(;>(;%23,(4"'"($*"231<(!$23$"4%"!n()2&5(.3!%#(!#%"'#"($&(#,%'%#3,(311,%#3$%&'>(p(@3$*&,>(LMM\R( LMUn(LWW6e[U> \ Hutchins B, Sajjadi N, Seaver S, Shepherd A, Bauer SR, Simek S, Carson K, Aguilar-Cordova E. Working toward an adenoviral vector testing standard. Molecular Therapy. December 2000; LJ\On(ZeL6ZeN> ] (9&,,&'(X>(S"!"32#*"2!(3'-(2"47,3$&2!(2"i"#$(&'(+2!$(4"'"($*"231<( -"3$*>(l3$72">(p3'732<(LMMMR(\J[On(\> U Savulescu J. Harm, ethics committees and the gene therapy death. J Y"-(d$*%#!>(LMM[R(L]n([NU6[ZM> W Marshall E. Gene therapy death prompts review of adenovirus vector. A#%"'#">([](B"#"5."2([WWWR(LU\JZNNUOn(LLNN6LLNZ> 10 Edwards SJL, Kirchin S, Huxtable R. Research ethics committees and 13$"2'3,%!5>(p(Y"-(d$*%#!>(LMMNR(eMn(UU6W[> 11 Smaglik P. Gene therapy institute denies that errors led to trial death. l3$72">(LN(F".2732<(LMMMR(NMen(ULM> 12 Smaglik P. Clinical trials end at gene-therapy institute. Nature. 1 June LMMMR(NMZn(NW]> 13 (p"'8!(A>(V"'"($*"231<(-"3$*(z(P"="2<&'"(*3!($&(!*32"(%'($*"(47%,$>Q(p( 1

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l3$,(E3'#"2(:'!$>(LMMMR(WLJLOn(WU6[MM> (V&,-'"2(pG>(B"3,%'4(0%$*(#&'i%#$!(&)(%'$"2"!$(%'(.%&5"-%#3,(2"!"32#*n( :SC(&="2!%4*$(3!($*"('"H$(."!$(!&,7$%&'($&($*"(3.&,%$%&'%!$(3112&3#*>(p>(`>(Y"-(T(d$*%#!>(?%'$"2(LMMMR(LUJNOn(e]W6NMN> 15 Walters L. The oversight of human gene transfer research. Kennedy :'!$%$7$"(&)(d$*%#!(p&72'3,>(p7'"(LMMMR([MJLOn([][6[]N> [\ Dettweiler U, Simon P. Points to consider for ethics committees in *753'(4"'"($*"231<($2%3,!>(C%&"$*%#!>(LMM[R([ZJZOn(NW[6ZMM> [] (m3,,"'(BX>(DA(4"'"($*"231<(%'(#2%!%!>(V"'"$%#!(T(A&#%"$<>(p7'"(LMMMR( [\J\On(L]L6L]Z> [U Wolf SM, Gupta R, Kohlhepp P. Gene therapy oversight: lessons for '3'&.%&$"#*'&,&4<>(p>(`>(Y"-(T(d$*%#!>(?%'$"2(LMMWR(e]JNOn( \ZW6\UN> [W Laurencot CM, Ruppel S. Regulatory aspects for translating gene therapy research into the clinic. Methods in Molecular Biology, V"'"(X*"231<(&)(E3'#"2>(LMMWR(ZNLn(eW]6NL[> 20 Kahn JP. Whoâ&#x20AC;&#x2122;s afraid of the RAC? Lessons from the oversight of #&'$2&="2!%3,(!#%"'#">(p>(`>(Y"-(T(d$*%#!>(?%'$"2(LMMWR(e]JNOn( \UZ6\U]> 21 Davidson BL, McCray PB Jr. Current prospects of RNA interference.3!"-($*"231%"!>(l3$72">(Y3<(LM[[R([Ln(eLW6eNM> 22 Couzin J, Kaiser J. As Gelsinger case ends, gene therapy suffers an&$*"2(.,&0>(A#%"'#">([U(F".2732<(LMMZR(eM]n([MLU> 23 Kay, MA. State-of-the-art gene-based therapies: the road ahead. Na$72">(Y3<(LM[[R([Ln(e[\6eLU> 24 (?%,,32-(9F>(G2$%+#%3,(#*2&5&!&5"!(#&5%'4($&(,%)">(A#%"'#">([](l&="5."2(LMMMR(LWMJZNWZOn([eMU6[eMW> 14

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The Void Within: Global Human Organ Trafficking and the Human Rights Agenda Angela Groves ’12 Princeton University

rimo Levi, a Holocaust survivor, poignantly captures the great inhumanity he experienced by describing the gaze between him and a l3f%(!&,-%"2n(PX*"(,&&8(03!('&$(&'"(."$0""'(5"'j(o$*"(,&&8y(#35"(3!( if across the glass window of an aquarium between two beings who live in different worlds.”1 More than half a century after Levi experienced this look, Nancy Scheper-Hughes reveals a new type of gaze created by $*"(4,&.3,($23)+#8%'4(&) (*753'(&243'!($*3$(&##72!(0*"'(P&'"(*753'( being looks at another living person and recognizes that inside that other living body is something that could prolong, improve, or extend his/her own life.”2(X*"(5&-"2'(2%!"(%'(4,&.3,(&243'($23)+#8%'4(%!(3(-%2"#$(2"!7,$( of the imposing forces of globalization and neo-liberalism and, like $*"!"()&2#"!/(%!(!3$723$"-(0%$*(%'"a73,%$<(3'-(#&55&-%+#3$%&'>(C"#37!"( &) ($*%!("5."--"-(%'"a73,%$<(3'-(#&55&-%+#3$%&'/($*"(&243'($23-"(-"*7manizes many global organ donors, revealing the vulnerability of declarations of equal humanity in the new world order. Most importantly, the global organ trade forces anthropologists and human rights workers to seriously consider Paul Farmer’s call for a new focus on economic and social rights. Although it may be painful to embrace frameworks emphasizing arguments of economics over those based purely on notions &) (*753'%$</($*"(4,&.3,(&243'($23-"(%!(7,$%53$",<(3(2"i"#$%&'(&) ($*"("#&'&5%#(%'K7!$%#"($*3$(2"!7,$!()2&5($*"('"0(0&2,-(&2-"2(3'-(&243'($23)+#8ing cannot be satisfactorily addressed without emphasizing the need for greater economic rights of the poor. The international trade in human organs is extensive, lucrative, and illegal in most countries. 3(X*"(?&2,-(9"3,$*(_243'%f3$%&'(2"1&2$"-( in 2004 that international organ trading was increasing, despite the fact that the trade has been proclaimed illegal and unethical by all medical 1 Primo Levi, Survival in Auschwitz/(Jl"0(k&28n(X&7#*!$&'"/([WW\O/([MZ>( 2 (l3'#<(A#*"1"26974*"!/(P@32$!(D'8'&0'n(D'-"2#&="2(d$*'&4231*<(&) ($*"(_243'!6X23)+#8%'4(D'-"20&2,-/Q(JC"28","</(EGn(A34"( @7.,%#3$%&'!/(LMMNO/(\e> 3 (l3'#<(A#*"1"26974*"!/(PX*"(V,&.3,(X23)+#(%'(9753'(_243'!/Q(Current Anthropology/((G12%,(LMMM/([WL>

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governing bodies.4 The demand for “fresh” organs, particularly de53'-"-(.<($*"(3)i7"'$/(#&5.%'"-(0%$*(2","'$,"!!($23)+#8"2!/(*3!(-230'( 3$$"'$%&'()2&5(&243'%f3$%&'!(!7#*(3!($*"(?&2,-(9"3,$*(_243'%f3$%&'(3'-( 3'$*2&1&,&4%!$!(,%8"(l3'#<(A#*"1"2(974*"!/(35&'4(&$*"2!>(:'([WW[/($*"( ?&2,-(9"3,$*(_243'%f3$%&'(3112&="-(3(!"$(&) (V7%-%'4(@2%'#%1,"!()&2($*"( organ trade emphasizing voluntary donation, non-commericialization and the preference of cadavers over living donors.5 At the time that these 47%-%'4(12%'#%1,"!(0"2"(2","3!"-/(:'-%3/(3(#&7'$2<($*3$(%'([WWN(13!!"-( legislation making the sale of organs illegal, was often referred to as the “organs bazaar of the world.”\ Spurred in part by the demands of wealthy patients from the Middle East, it is estimated that 2,000 living -&'&2($23'!1,3'$3$%&'!(0"2"(1"2)&25"-("3#*(<"32(%'(:'-%3(%'($*"("32,<( [WWM!(.")&2"($*"(123#$%#"(03!(12&*%.%$"->] G,$*&74*(&243'6!",,%'4(%!(%,,"43,(%'(:'-%3/(3!(0",,(%'(C23f%,/(X72key and Moldova, these countries continue to be well-known sources of living organ donors as a result of the growing underground market of organ trade.U(F&2("H351,"/(A#*"1"26974*"!($",,!($*"(!$&2<(&) (;,3-%5%2/( 3(<&7'4(53'()2&5(Y&,-&=3(0*&(03!(,72"-($&(:!$3'.7,(%'($*"(,3$"([WWM!( 3)$"2(."%'4($&,-($*3$(*"(03!(4&%'4()&2(3(-2<(#,"3'%'4(K&.>(_'#"(%'(:!$3'.7,/(;,3-%5%2()&7'-($*3$(*%!(&',<(#*3'#"(&) (2"$72'%'4(*&5"(5"3'$(!",,%'4( *%!(8%-'"<()&2(7!"(.<(3(0"3,$*<(:!23",%(13$%"'$>W Although this particular example takes place in Eastern Europe and Turkey, the United States is not completely immune to the organ trade, with 20 percent of living kidney donor transplants attributed to unrelated donors that transplant centers are reluctant to question, according to Scheper-Hughes.10 While the trade of part-livers and corneas is developing in some parts of the world, kidneys are the primary commodity in the organ trade involving ,%=%'4(-&'&2!>(:$(%!(3,!&(%51&2$3'$($&('&$"($*3$(3,$*&74*(53'<($23'!1,3'$( involve donors who are unpaid, the focus of this paper is on those who sell their organs in the international market. ( X*"(4,&.3,($23)+#8%'4(&) (*753'(&243'!(%!(-%2"#$,<("'3.,"-(3'-( perpetuated by globalization. Without globalization, global organ trade 4 E,32"(l7,,%!6q311>(P_243'(X23)+#8%'4(3'-(X23'!1,3'$3$%&'(@&!"(l"0(E*3,,"'4"!>Q(Bulletin of the World Health Organization, September 1, 2004. 5 (?&2,-(9"3,$*(_243'%f3$%&'/(P9753'(_243'(3'-(X%!!7"(X23'!1,3'$3$%&'/Q(*$$1ngg000>0*&>%'$g"$*%#!g$&1%#!g*753'}$23'!1,3'$g en/. 6 (A#*"1"26974*"!/(PX*"(V,&.3,(X23)+#(%'(9753'(_243'!”,([WZ> 7 Ibid, [WZ> 8 Nullis-Kapp. 9 (A#*"1"26974*"!/(P@32$!(D'8'&0'Q/(N]>( 10 Ibid, 45.

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would not be possible. From an economic perspective, Trevor Har2%!&'(-"+'"!(4,&.3,%f3$%&'(3!($*"(P"!$3.,%!*5"'$(&) (3(#&51,"H(!"2%"!( of world-wide exchanges in labor, trade, technology, and capital be$0""'(#&7'$2%"!jQ11(:'(3(1&,%$%#3,(!"'!"/(4,&.3,%f3$%&'(%!(!""'(%'($*"( interconnectedness and interdependence of countries. Additionally, there are cultural and ideological implications of globalization, particularly evident in neo-liberal values which advocate the dominance of a competition-driven market.12 The rapid spread of medical procedures and biotechnologies around the world that results from globalization #2"3$"!(3(!1"#%+#('%#*"()&2($*"(&243'($23-"(5328"$>(X*"(3-=3'#"5"'$(&) ( transplant technology makes the process available to more people, while the interconnectedness of nations combined with new biotechnologies makes the transport of organs feasible. The rise of globalization is a key contextual factor in understanding the organ trade . The emergence of new “needs”, a perceived scarcity of commodities, and a consumer culture are characteristics of the organ trade that mirror globalization. Like many other new needs that have emerged as a result of new availability and modern mindsets, much of the perceived “need” for organ transplants results from modern conceptions of the need to extend life, creating an alleged scarcity &) (&243'!>(A#*"1"26974*"!(.",%"="!($*3$($*%!('""-(%!(32$%+#%3,(3'-(3247"!/( “The idea of scarcity that is created by technicians of transplant sur4"2<(2"12"!"'$!(32$%+#%3,('""-($*3$(#3'b$(."(+,,"-(."#37!"(&) ($*"(-"!%2"( $&("H$"'-(,%)"(%'-"+'%$",<(0%$*($*"(&243'!(&) (&$*"2!>Q13 According to Scheper-Hughes, life has become the “ultimate commodity fetish.”14 Prompted by the consumerism that is intertwined with globalization, global consumers increasingly feel a right to any commodity that they can afford to purchase, including organs. The consumer culture within the organ trade is intertwined with the fact that the organ market is a 132$(&) ($*"(w[](.%,,%&'(.%&$"#*'&,&4<(%'-7!$2<>15 The consumer culture &) ($*"(&243'($23-"(*3!(3,!&($23'!,3$"-(%'$&(3(42&0%'4(-"!%2"(!1"#%+cally for “fresh” organs, meaning the organs are extracted from a living -&'&2>(F&2("H351,"/(A#*"1"26974*"!($",,!(&) (3'(3)i7"'$(:!23",%(53'( named Avraham who refused to receive a cadaver organ, saying, “Why 11 12 13 14 15

Trevor Harrison, “Globalization and the Trade in Human Body Parts,” Canadian Review of Sociology and Anthropology>(F".([WWW> Paul Farmer, Pathologies of Power/(JC"28","</(EGn(D'%="2!%$<(&) (E3,%)&2'%3(@2"!!/(LMMZO/(Z>( (A#*"1"26974*"!/(PX*"(V,&.3,(X23)+#(%'(9753'(_243'!Q/([WM> (A#*"1"26974*"!/(P@32$!(D'8'&0'Q/(\e> Lori Andrews and Dorothy Nelkin, Body Bazaar: The Market for Human Tissue/(Jl"0(k&28n(E2&0'(@7.,%!*"2!/(LMM[O/(L>(

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!*&7,-(:(03%$(<"32!()&2(3(8%-'"<()2&5(!&5".&-<(0*&(03!j(%'(5%!"23.,"( #&'-%$%&'j(3'-(*3="($*3$(!35"(&243'(17$(%'!%-"(5"c>>>(l&(&.=%&7!,<(%$(%!( 57#*(."$$"2($&(4"$(3(8%-'"<()2&5(3(*"3,$*<(1"2!&'jQ[\ From Avraham’s statement, it is apparent that the consumer culture from globalization not only creates a demand for new products, but also a demand for what is believed to the best and freshest of those products. ( :'(3--%$%&'($&($23'!1&!%'4(%$!(4"'"23,(#*323#$"2%!$%#!(&'$&($*"( organ trade, the rise of globalization and neo-liberalism has had two other major consequences for the nature of the organ trade-- inequality 3'-($*"(#&55&-%+#3$%&'(&) ($*"(.&-<>(X*"(-%!!"5%'3$%&'(&) (2"!&72#"!( that occurs as a result of globalization does not occur on an equal play%'4(+",->(E&7'$2%"!(0%$*("!$3.,%!*"-("#&'&5%#(3'-(1&,%$%#3,(1&0"2(."'"+$( most from globalization at the expense of developing countries, as seen in the growing economic inequality that accompanies globalization and neo-liberalism.[]The organ trade is no exception to this pattern of inequality that is embedded in neo-liberalism. As Trevor Harrison, author of “Globalization and the Trade in Human Body Parts,” notes, “The trade in human body parts mirrors the normal system of unequal exchanges that marks other forms of trade between developed and undeveloped regions.”[U(X*"(%'"a73,%$<(&) ($*"("H#*3'4"(%!(#,"32,<(2"i"#$"-(%'($*"(-%))"2ence between the compensation of the donor and the price paid by the 2"#%1%"'$>(X*"(?&2,-(9"3,$*(_243'%f3$%&'(2"1&2$!($*3$(3,$*&74*(.2&8"2!( #*324"(."$0""'(w[MM/MMM(3'-(wLMM/MMM($&(&243'%f"(3($23'!1,3'$/(-&'&2!( 2"#"%="(3!(,%$$,"(3!(w[/MMM()&2($*"%2(8%-'"<!>[W Scheper-Hughes notes that just as there are stark monetary differences, there are also clear lines drawn between organ-donor countries and organ-recipient countries. Like the history of the use of many other global resources, the resources of the poor, in this case organs, are extracted from poor countries to be used by rich countries. Scheper-Hughes !1"#%+"!($*%!(i&0("="'()72$*"2(.<(*%4*,%4*$%'4($*"()3#$($*3$(&243'!($<1%#3,,<(i&0()2&5(P!&7$*($&('&2$*/(1&&2($&(3)i7"'$/(.,3#8($&(0*%$"/()"53,"!($&( males.”20 The organs of the most vulnerable and marginalized citizens of the global community are removed from their bodies and integrated into the bodies of privileged patients miles away in order to extend their lives. 16 17 18 19 20

(A#*"1"26974*"!/(P@32$!(D'8'&0'Q/(N]>( (@"$"2(A#*03.(3'-(G-353'$%3(@&,,%!/(PV,&.3,%f3$%&'b!(:513#$(&'(9753'(S%4*$!/Q(Human Rights: New Perspective, New Realities, 2000. Harrison. Nullis-Kapp. (A#*"1"2(974*"!/(P@32$!(D'8'&0'Q/(e]>(

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( :'(3--%$%&'($&(#&'$2%.7$%'4($&($*"(%'"a73,%$<($*3$(-"+'"!($*"( &243'($23-"/(4,&.3,%f3$%&'(*3!(3,!&(1"21"$73$"-($*"(#&55&-%+#3$%&'(&) ( $*"(.&-<>(:'(PX*"(E&55&-%+#3$%&'(&) ($*"(C&-<(3'-(:$!(@32$!/Q(`"!,"<( A. Sharp reminds her readers that there is a long history of targeting the .&-<()&2(#&55&-%+#3$%&'(%'(53'<(-%))"2"'$(#7,$723,(!"$$%'4!>(F&2("H35ple, slavery, female reproduction, and realms of sorcery and endocannibalism are historical methods of commodifying the body.21 The current dissemination of new medical technologies, however, creates what Sharp #3,,!(3(P1323-%453$%#(!*%)$Q(%'($*"(7'-"2!$3'-%'4!(&) ($*"(#&55&-%+"-( body.22 Sharp argues that these new biotechnologies encourage self&.K"#$%+#3$%&'(3'-(1"2#"1$%&'!(&) ($*"(.&-<(3!(3(17.,%#,<(=3,7"-(4&&->( Such goods become “objects of intense desire.”23 The intense desire for these “goods” presents the opportunity for companies to capitalize by perpetuating a culture of consumerism. For example, advertisements with contact information such as, “liver4you@yahoo.com,” further the #&55&-%+#3$%&'(&) ($*"(.&-<>24 ?*%,"(%$(%!("3!<($&(!%51,<(3##"1$($*3$(#&55&-%+#3$%&'(&) ($*"( body has a long history and is a natural result of the spread of availability of products, the work of various scholars can be utilized to reveal the -3'4"2($*3$($*%!(#&55&-%+#3$%&'(12"!"'$!>(`&2%(G'-2"0!(3'-(B&2&$*<( Nelkin show how the viewing of the body as a good for purchase can quickly become problematic, stating, “The body is more than a utilitarian object: it a social, ritual, and metamorphical entity, and the only thing people can really call their own.”25 When parts of the body are treated like any other object for sale, the other characteristics of the body, such 3!(%$!(!&#%3,(3'-(2%$73,(!%4'%+#3'#"/(32"(1,3#"-(3$(2%!8(&) (-"=3,73$%&'>(`"!ley Sharp states that through the organ trade, “Body parts are extracted like a mineral, harvested like a crop, or mined like a resource.”L\ Human bodies are not minerals or crops and treating them as such requires that we call into question the human rights of any practice that reduces components of the human body to inanimate resources. The danger in commodifying the body and reducing it to an inanimate object is that it can lead to dehumanization. The work of Lesley Sharp on mind-body dualism shows the dangerous consequences 21 22 23 24 25 26

(`"!,"<(G>(A*321/(PX*"(E&55&-%+#3$%&'(&) ($*"(C&-<(3'-(:$!(@32$!/Q(Annual Review of Anthropology/(LMMM/(LU]> Ibid/(LU]>( Ibid/(LWZ>( (A#*"1"26974*"!/(u@32$!(D'8'&0'/(\L> (G'-2"0!(3'-(l",8%'/(]>( Sharp, 315.

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&) (#&55&-%+#3$%&'(3'-(%$!(,%'8($&(-"*753'%f3$%&'/(.7$()3%,!($&("H$"'-( this connection to the organ trade. Sharp discusses recent anthropological theories that regularly challenge Cartesian mind-body dualism and instead view the body, personhood, and self as inextricably linked.L] Sharps !*&0(*&0(5&-",!(&) (E32$"!%3'(-73,%!5(3,,&0()&2($*"(#&55&-%+#3$%&'( of the body by creating a separation of the body and the self, ultimately dehumanizing a person.LU While Sharp mentions that dualistic views of the body are rampant in medical practice, she does not explicitly extend these views to the organ trade industry, although this connection is apparent. Perspectives that separate the body and self allow the practice of &243'($23)+#8%'4($&("H%!$(.<(1"21"$73$%'4($*"(-3'4"2&7!(#&55&-%#3$%&'( that makes this practice acceptable. For example, dualistic views of the .&-<(*",-(0%$*%'($*"(5"-%#3,(+",-(#3'(."(#&''"#$"-($&(#*3'4"!(%'($*"( way in which medical teams have come to utilize the identities of organ -&'&2!>(:'($*"("32,<(<"32!(&) (&243'($23'!1,3'$(%'($*"(D'%$"-(A$3$"!/(5"-%cal teams revealed the identities of donors of cadaver organs and shared details about the donors’ lives. This information was shared because it was believed that organ donors and recipients were “intimate participants” and entitled to this knowledge.LW This practice no longer exists, an absence which detracts from the humanity of the donor. Furthermore, dualistic perspectives not only passively allow the organ trade because &) (%$!(%51,%#3$%&'(%'($*"(5"-%#3,(+",-/(.7$($*%!(1"2!1"#$%="(%!(3#$%=",<(3'-( consciously utilized by some in the organ donation industry to increase the acceptability of the practice. Reductionist language that distinguishes between body parts and actual people makes the practice of the exploitation of the underprivileged for their organs more socially acceptable. As Sharp notes, “This reductionist language is increasingly permeated with commercial metaphors,” such as viewing the body as a machine, resource, or subject instead of a human being.30 Clearly, it is in the interest of those in the industry to commodify the body, even though this com5&-%+#3$%&'(*3!(3(-"*753'%f%'4("))"#$>( The dehumanization that has crept into the organ trade is crucial to studies of human rights because it shows the vulnerability in maintaining the humanity of all and the human rights violations that can arise )2&5($*%!(=7,'"23.%,%$<>((X*"(="2<(+2!$(32$%#,"(&) ($*"(D'%="2!3,(B"#,32327 (A*321/(LUW> 28 Ibid/(LUW>( 29 Fox and Swazey, Spare Parts: Organ Replacement in American Society/(Jl"0(k&28n(_H)&2-(D'%="2!%$<(@2"!!/([WWLO/(e]>( 30(((((((((((((((((((((A*321/(e[\>(

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tion of Human Rights states, “All human beings are born free and equal in dignity and rights.”31(X*"(-"*753'%f3$%&'(&) (!1"#%+#(*753'(.&-%"!/( namely those of the poor, undermines the equality of dignity and rights required by the Declaration. The organ trade reveals that the protection of human rights hinges upon the protection of the belief in the equal *753'%$<(&) (3,,(1"&1,">(X*"(-""1(3'-(2"3,(-3'4"2(%'($*"(#&55&-%+#3tion of the body is that it encourages human beings to see and treat other human beings as less than human, leading to the degradation of equal humanity. By evaluating the dehumanization that occurs in global or43'($23)+#8%'4/(&'"(%!()&2#"-($&("=3,73$"(5"3'%'4!(&) ("a73,(*753'%$<>( Scheper Hughes criticizes the degradation of equal humanity that occurs $*2&74*(&243'($23)+#8%'4(0*"'(!*"(!$3$"!/(P:$(5%4*$(."()3%2($&(3!8(%) (u$*"( life’ that is teased out of the body of the one and transferred into the body of the other bears any resemblance to the ethical life of the free #%$%f"'(J.%&!O(&2(0*"$*"2(%$(5&2"(#,&!",<(2"!"5.,"!($*"(.32"(&2('38"-(,%)"( of the slave.”32 The term bios that Scheper-Hughes mentions is a reference to the work of Giorgio Agamen, who discusses the differences ."$0""'(.%&!/($*"(a73,%+"-(,%)"(&2()&25(&) (,%=%'4(12&1"2(&) (3'(%'-%=%-73,( group, and zoe, the simple fact of living common to all or bare life.33(:'( response to Scheper-Hughes’ question, the dehumanization of marginalized individuals that occurs through the inequalities embedded in the organ trade does in fact detract from one’s ability to live a bios life. The 3.%,%$<($&(,%="(3(Pa73,%+"-(,%)"Q(&) (.%&!(%51,%"!($*3$(3'(%'-%=%-73,(*3!(&0'ership over his/her body. However, the organ trade disproportionately causes the economically marginalized to transfer ownership of a physical 1&2$%&'(&) ($*"%2(.&-%"!($&(!&5"&'"(",!">(:'((PV,&.3,(X23)+#(&) (9753'( _243'!Q/(A#*"1"26974*"!("',%!$!($*"(a7"!$%&'(&) (0*"$*"2(&243'(!",,"2!( have ownership of their bodies.34(:) (&'"b!(&0'"2!*%1(&) (*%!g*"2(&0'( .&-<(%!(a7"!$%&'"-/(%$(%!(-%)+#7,$($&(%534%'"(*&0(3($27,<(a73,%+"-(,%)"(#3'( be lived. Therefore, the organ donors’ loss of ownership over his/her body leads to a loss of the ability to lead a bios life, thus, undermining his/her humanity. The way in which the organ trade can cause the transition from bios to zoe is an indicator that declarations of equal humanity are vulnerable in the new world order. 31 32 33 34

The United Nations, “The Universal Declaration of Human Rights,” http://www.un.org/en/documents/udhr. (A#*"1"26974*"!/(PX*"(V,&.3,(X23)+#(%'(9753'(_243'!Q/([W]> Giorgio Agamen, Homo Sacer: Sovereign Power and Bare Life/(JA$3')&2-/(EGn(A$3')&2-(D'%="2!%$<(@2"!!/([WWUO/(([> (A#*"1"26974*"!/(PV,&.3,(X23)+#(%'(9753'(_243'!Q/([W]>

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While the dehumanization of international organ donors begins 0%$*('"&,%."23,%!5/(%'"a73,%$</(3'-(#&55&-%+#3$%&'/($*"%2(*753'%$<( remains vulnerable because of their invisibility. The work of ScheperHughes, for example, played an important role in bringing visibility to organ sellers. The general invisibility of the poor is a consequence, at least in part, of the unequal impacts of globalization. The information, stories, and viewpoints of those with access to the most resources are more likely to be disseminated throughout the global community than the stories of those who lack these resources. Similar to the stance taken by Scheper-Hughes, this paper also positions itself on the side of the organ seller because of the need for the telling of their stories. Scheper-Hughes notes the need for telling the stories of organs sellers: “Transplant stories are generally told from the patient-recipient’s point of view in a deeply affecting, emotional, rhetorical, even ideological language of gift-giving, altruism, reciprocity, lifesaving and heroism.”35 The focus on the perspectives of organ recipients encourages the belief that international organ selling is a laudable process because it connects people from different worlds who would not otherwise be connected. This connection is seen as a positive occurrence for the recipient because he/she now has a part of another person within his/her body. However, while the donor has a new organ integrated into his/her body, it is often overlooked that the seller is left with a void in his/her body. Thus, it comes as little surprise that although recipients are well-informed about the effect that kidney donation will have on their bodies, few know anything about the impact of the transplants on their donor’s life.e\ ( :'(&2-"2($&(%'#2"3!"($*"(=%!%.%,%$<(&) (&243'(!",,"2!(3'-($*"(=&%-( with which they may be left, there is a need for increased scholarly work examining the meaning of organ transplants for donors in an age of 4,&.3,(&243'($23)+#8%'4>(G!(5"'$%&'"-(%'($*"(A#*"1"26974*"!b(!$3$"ment in the previous paragraph, there is a focus on the ideology of gift-giving in studies of organ transplants. The work of Renee Fox and p7-%$*(A03f"<(A132"(@32$!n(_243'(S"1,3#"5"'$(%'(G5"2%#3'(A&#%"$<(%!(3'( example of research positioned on the side of organ recipients. These 37$*&2!(3247"($*3$("="'(0%$*(.%&5"-%#3,(3'-(!&#%3,(#*3'4"!(%'($*"(+",-( &) ($23'!1,3'$3$%&'/(P$*"(3!1"#$!(&) (!""8%'4(3'-(4%=%'4j(2"53%'(%'$2%'!%#( to the dynamics and meaning of transplantation.”e] The conclusions of 35 36 37

(A#*"1"26974*"!/(P@32$!(D'8'&0'Q/(e]>( (A#*"1"26974*"!/(P@32$!(D'8'&0'/Q(\e>( Fox and Swazey,32.

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Fox and Swazey are without doubt true for many organ donors, including organ donors in countries such as the Philippines where their Roman Catholic tradition encourages donating organs. However, intrinsic gift-giving does not universally apply to donors in the international organ $23-">(X*"()3#$($*3$(F&H(3'-(A03f"<(0"2"(02%$%'4(%'([WWL/(3($%5"(0*"'( the facts about international organ were less widespread than they are today, shows the limited conclusions about organ transplantation that can be drawn in the absence of visibility of the stories of donors. Now that Scheper-Hughes and others have expanded the research on global organ $23)+#8%'4/($*"&2%"!(&) (4%)$64%=%'4(57!$(."(2"#&'!$27#$"-($&(%'#,7-"($*"( perspectives of organ sellers. ( X*%!(!$7-<(&) (&243'($23)+#8%'4(#&7,-(#&'#,7-"(&'($*"('&$"(&) ( dehumanization and the need to achieve equal respect of dignity and *753'%$<()&2(&243'(-&'&2!>(:'-""-/(3!(3(*753'(2%4*$!(3-=&#3$"/(3()&cus on common humanity would be most desirable. However, there is a 42"3$"2(7'-"21%''%'4($&($*"(!$&2<(&) (&243'($23)+#8%'4($*3$("="'(A#*"1"26 Hughes fails to adequately emphasize. The role of poverty and economic injustice is the most central and underlying dilemma of global organ $23)+#8%'4>(G!(*3!(.""'(-"5&'!$23$"-/("#&'&5%#(!$3$7!(%!(#"'$23,($&( $*"('3$72"(&) (%'$"2'3$%&'3,(&243'($23)+#8%'4>(G,$*&74*($*"2"(*3="(.""'( rumors about the theft of organs, only few of them appearing legitimate, Harrison points out that the “coercive effects of poverty and starva$%&'Q(32"(&)$"'(!7)+#%"'$("'&74*($&()&2#"(1"&1,"(%'(1&="2$<($&(!",,($*"%2( organs.eU(((F&2("H351,"/(`302"'#"(E&*"'b!(!$7-<(P?*"2"(%$(972$!n(:'-%3'( Y3$"2%3,()&2(3'(d$*%#!(&) (_243'(X23'!1,3'$3$%&'Q(-%!#&="2"-($*3$($*"( !3,"(&) (&243'!(%'(:'-%3(03!(-""1,<(#&''"#$"-($&(-".$> He found that the aggression with which moneylenders called in debts may have correlated with whether a debtor lived in a kidney zone.eW This implies that debtors 0"2"('"32,<("H1"#$"-($&(!",,($*"%2(8%-'"<!($&(35",%&23$"($*"%2(-".$!>(_) ( #&72!"/($*&74*(!&5"(:'-%3'!(0"2"(!",,%'4($*"%2(&243'!/(="2<()"0(1"&1,"(%'( the country could actually afford the cost of transplantation should they need an organ.40(X*"%2(&243'!(0"2"(%'$"423$"-(%'$&($*"(.&-%"!(&) (3)i7"'$( foreigners. Although these economic inequalities appear to be strongest used as evidence for further prohibition of and caution towards organ traf38 Harrison. 39 (`302"'#"(E&*"'/(P?*"2"(%$(972$!n(:'-%3'(Y3$"2%3,()&2(3'(d$*%#!(&) (_243'(X23'!1,3'$3$%&'/Q(Zygon:Journal of Religion & Science, A"1$"5."2(LMMe/(\]Z>( 40 Harrison.

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+#8%'4/($*"2"(*3="(.""'(32475"'$!($*3$(=%"0("#&'&5%#!(3!(3(2"3!&'()&2( the legalization of kidney sales. Janet Radcliffe-Richards, lead publisher of “The Case for Allowing Kidney Sales” in the Lancet, was one of the voices calling for the legalization of kidney sales. She argues that the selling of kidneys provides an option for the poor to gain greater resources. Radclife-Richards states, “The worse we think the selling of a kidney, therefore, the worse should seem the position of the vendors when that option is removed.”41 Taken from this point of view, the sale of organs %!(!""'(3!(."'"+#%3,($&($*"(!",,"2(."#37!"(%$(3$(,"3!$(12&=%-"!(3'(&1$%&'()&2( 4"$$%'4(&7$(&) (1&="2$<>(_'"(1*<!%#%3'(%'(:'-%3(0*&(03!(%'$"2=%"0"-(%'( Cohen’s study appears to side with Radcliffe-Richards, stating “the real wound is poverty, and the operation provided the money to heal it.”42 G=23*35/($*"(3)i7"'$(8%-'"<(2"#%1%"'$()2&5(:!23",(0*&(03!(%'$"2=%"0"-( by Scheper-Hughes, followed a similar line of thought and believed that he was helping his poor organ donor. Avraham told Scheper-Hughes, “Do you have any idea of what one, let alone 5000 dollars means to 3(1"3!3'$c(X*"(5&'"<(:(13%-(*%5(3!(3(u4%)$(&) (,%)"b(%!("a73,($&(0*3$(:( received.”43 Avraham believed that his act of paying the peasant equal%f"-($*"(."'"+$!(2"#"%="-(.<(-&'&2(3'-(2"#%1%"'$>( While the arguments of Radcliffe-Richards and Avraham are important for pinpointing the root of the organ trade problem, global poverty, they are woefully misguided in the solutions that they propose. :'!$"3-(&) (2"="2$%'4($&(2",3$%=",<(5%'%!#7,"(#&51"'!3$%&'!(2"#"%="-( from the selling of organs to heal the wounds of poverty, Paul Farmer’s work provides a much more viable solution to these issues. At its core, $*"("H1,&%$3$%&'(&) (*753'(.&-%"!($*3$(%'(*753'(&243'($23)+#8%'4(%!(3'( example of what Farmer calls “structural violence.” Structural violence is exerted systematically, and often indirectly, by those belonging to a cer$3%'(!&#%3,(&2-"2(0%$*(1&0"2/(%'i7"'#%'4($*"('3$72"(3'-(-%!$2%.7$%&'(&) ( suffering.44 Structural violence leads to rights violations, a process Farmer describes in the following statement: “Rights violations are, rather, symptoms of deeper pathologies of power and are linked intimately to the social conditions that so often determine who will suffer abuse and who will be shielded from harm.”45(:$(%!(."#37!"(&) ($*"(!&#%3,(#&'-%$%&'!(&) ( the poor in developing conditions that their bodies are not shielded from 41 42 43 44 45

Janet Radcliff-Richards and others, “The Case for Allowing Kidney Sales,” Lancet/(p7'"(L]/([WWU>, 10. (E&*"'/(\\U (A#*"1"26974*"!/(P@32$!(D'8'&0'Q/(N]>( Farmer. (F325"2/(]>(

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organ sales and are consequently left with a void, while the bodies of the 3)i7"'$(32"(12&$"#$"-(3'-(+,,"-(0%$*()7'#$%&'%'4(&243'!> Explicitly connecting the organ trade to acts of structural violence leads to a new perspective with which to understand the organ trade. Although Farmer does not directly discuss the organ trade, he provides relevant insight into approaching structural violence, arguing for a human rights focus on achieving social and economic rights for the poor. While debates about legalization versus prohibition of the organ trade 32"('"#"!!32<(%'($*"(!*&2$6$"25/($*"(12&.,"5!(&) (&243'($23)+#8%'4(#3'( only truly be addressed by emphasizing the economic rights of the poor in developing countries who are exploited by neo-liberalism. The reason that a disproportionate number of these people are willing to lose a part of their body for someone whom they have no connection to is rarely $*"(172"(2"!7,$(&) (3('&.,"(3,$27%!5/(.7$(23$*"2(%!(*"3=%,<(%'i7"'#"-(.<(3( bitter poverty that presents limited options for economic survival. Until these organ sellers have the economic justice that shields their bodies )2&5($*"(2%!8(&) (."%'4("H1,&%$"-/(&243'($23)+#8%'4(0%,,(#&'$%'7"($&("H%!$( %'(!&5"()&25>(:'(&2-"2($&($27,<(538"(3(-%))"2"'#"(%'("!$3.,%!*%'4(*753'( dignity in all organ transplantations, Scheper-Hughes and others must emphasize the deep underlying need for bringing economic justice to the new world order. The gaze of one human being upon another can reveal magnitudes about the state of humanity. When Primo Levi stared into the eyes of a Nazi, he felt a great barrier and disconnect that translated into a gaze that he did believe was between two human beings. While globalization allows large physical distances between humans who are connected to one another via technological advancements, the metaphoric gaze between two people interacting through this system still serves as a point of discovery. As a result of globalization, neo-liberalism, and the #&55&-%+#3$%&'(&) ($*"(.&-</($*"(43f"(."$0""'(&243'(!",,"2(3'-(&243'( recipient is far from the equal gaze between human beings. The rise of &243'($23)+#8%'4(*3!(3,,&0"-($*"("H%!$"'#"(&) (3(!&#%"$<(%'(0*%#*(3'(3)i7ent human being can look at a poor human being and see him primarily for the biological resources he can provide. Such a society is the result of '"&6,%."23,%!5(3'-(#&55&-%+#3$%&'/(0*%#*(,"3-!($&($*"(%'=%!%.%,%$<(3'-( dehumanization of organ donors. While there are surely organ sellers who see themselves as gift-givers and do not object to the practice, it is )&2($*"(&243'(!",,"2!(0*&(32"("H1,&%$"-/(,%8"(;,3-%5%2()2&5(Y&,-&=3/($*3$( 116

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this paper is positioned. The conditions under which organ sellers decide to remove a functioning part of their own bodies for its integration into another are not simply conditions of mere gift giving, but increasingly include conditions of deep global poverty. While it would be nice to conclude with need for common humanity, the reality is that the global organ trade shows just how crucial and universally relevant Paul Farmer’s calls for economic rights are for the attainment of human rights. Until economic justice enters the new world order, the bodies many poor people 0%,,(#&'$%'7"($&(#322<(3'(%'$"2'3,(=&%-($*3$(."'"+$!($*"(4,&.3,,<(3)i7"'$> Works Cited Agamen, Giorgio. Homo Sacer: Sovereign Power and Bare Life. Stan)&2-/(EGn(A$3')&2-(D'%="2!%$<(@2"!!>([WWU> Andrews, Lori and Dorothy Nelkin. Body Bazaar: The Market for Hu53'(X%!!7">(Jl"0(k&28n(E2&0'(@7.,%!*"2!/(LMM[O>( `302"'#"(E&*"'>(P?*"2"(%$(972$!n(:'-%3'(Y3$"2%3,()&2(3'(d$*%#!(&) ( _243'(X23'!1,3'$3$%&'>Q(m<4&'n(p&72'3,(&) (S",%4%&'(T(A#%"'#">( September 2003. Farmer, Paul. Pathologies of Power. Berkeley, CA: University of California Press. 2005. F&H(3'-(A03f"<>(A132"(@32$!n(_243'(S"1,3#"5"'$(%'(G5"2%#3'(A&#%"$<>( l"0(k&28n(_H)&2-(D'%="2!%$<(@2"!!>([WWL> Harrison, Trevor. “Globalization and the Trade in Human Body Parts.” E3'3-%3'(S"=%"0(&) (A&#%&,&4<(3'-(G'$*2&1&,&4<>(F".([WWW> `"=%/(@2%5&>(A72=%=3,(%'(G7!#*0%$f>(l"0(k&28n(X&7#*!$&'">([WW\>( l7,,%!6q311>(E,32">(P_243'(X23)+#8%'4(3'-(X23'!1,3'$3$%&'(@&!"(l"0( E*3,,"'4"!>Q(C7,,"$%'(&) ($*"(?&2,-(9"3,$*(_243'%f3$%&'>(A"1$"5ber 1, 2004. Radcliff-Richards, Janet and others. “The Case for Allowing Kidney A3,"!>Q(`3'#"$>(p7'"(L]/([WWU> A#*03./(@"$"2(3'-(G-353'$%3(@&,,%!>(PV,&.3,%f3$%&'b!((:513#$(&'(9753'( Rights.” Human Rights: New Perspectives, New Realities. 2000. A#*"1"26974*"!/(l3'#<>(PX*"(V,&.3,(X23)+#(%'(9753'(_243'!>Q(E72rent Anthropology. April 2000. Scheper-Hughes, Nancy. “Parts Unknown: Undercover Ethnography of $*"(_243'!6X23)+#8%'4(D'-"20&2,->Q(C"28","</(EGn(A34"(@7.,%#3tions. 2004. 117

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A*321/(`"!,"<(G>>(PX*"(E&55&-%+#3$%&'(&) ($*"(C&-<(3'-(:$!(@32$!/Q(G'nual Review of Anthropology, 2000. The United Nations, “The Universal Declaration of Human Rights,” http://www.un.org/en/documents/udhr. ?&2,-(9"3,$*(_243'%f3$%&'/(P9753'(_243'(3'-(X%!!7"(X23'!1,3'$3tion,” http://www.who.int/ethics/topics/human_transplant/ en/.

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Give Them the Pills! A Response to Ronald Dworkin Alexander Frawley ’12 Georgetown University

ommon sense indicates that doctors should do what they can to cure elderly patients of any common and easily curable disease they may develop. After all, if all one needs is a dose of common antibiotics in order to fully recover, why would any doctor ever consider 0%$**&,-%'4($2"3$5"'$c(_'"(1&!!%.,"(2"!1&'!"(#&'#"2'!(%'!$3'#"!(%'( which the patient is a severely demented person in the late stages of Alzheimer’s Disease who, at a time earlier in her life before becoming demented, expressed a desire to be denied any lifesaving treatment should she ever develop advanced Alzheimer’s. For instance, in his book, Life’s Dominion, Ronald Dworkin convincingly argues that doctors are morally obligated to withhold such treatment from this type of patient regardless of how happy she may appear in her current demented state. :'(-&%'4(!&/(B0&28%'(-%!5%!!"!(&72(!$2&'4(%'$7%$%&'($&(12&,&'4($*"(,%)"( of a seemingly happy patient for the sake of respecting the patient’s 12%&2(0%!*(JB0&28%'(LLU6LLWO>((:'($*%!("!!3</(*&0"="2/(3)$"2(12&=%-%'4( 3(-"$3%,"-(!75532<(&) (B0&28%'b!(=%"0!/(:(0%,,(7,$%53$",<(2"K"#$(*%!( conclusion and argue that doctors are morally obligated to provide such treatment to patients despite any wishes they had expressed many years before reaching their current demented state. Dworkin’s argument rests on the distinction he makes between critical and experiential interests and the way in which he applies this distinction to the case of a seemingly content demented person, Margo, who had previously expressed a desire to be denied any lifesaving $2"3$5"'$(%) (!*"("="2(-"=",&1"-(3-=3'#"-(-"5"'$%3(JLL[/(LL\O>(B0&28%'( -"+'"!("H1"2%"'$%3,(%'$"2"!$!(3!($*"(%55"-%3$"(423$%+#3$%&'(!""8%'4( interests that we share with animals such as a desire to consume food 3'-($*"(-"!%2"($&(!,""1(JLeZO>(_'($*"(&$*"2(*3'-/(#2%$%#3,(%'$"2"!$!( concern our conception of “the character and value of our lives as a 0*&,"Q(JLeZO>((F&2("H351,"/(:(*3="(3(#2%$%#3,(%'$"2"!$(%'(."%'4(3(4&&-( older brother and role model to my younger sister, which is distinct from my experiential interest in being able to sleep late tomorrow morning. This is the case because only the former concerns an interest that 1"2!%!$!($*2&74*&7$(5<(,%)"(3'-($*3$(!%4'%+#3'$,<(3))"#$!($*"(03<(%'(0*%#*( :(=%"0(5<!",)> 119

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Dworkin uses this distinction to argue that we would be morally obligated to withhold lifesaving treatment from Margo if she were to fall ill. He explains that Margo’s previous wish to be denied lifesaving $2"3$5"'$(#&'!$%$7$"!(3(#2%$%#3,(%'$"2"!$(JLe[O>(9"('&$"!($*3$(53'<( people feel exactly the same way as Margo did due to their opinions regarding the value of their lives and the extent to which they believe that living through advanced dementia would subtract from the value &) ($*"%2(,%="!(&'($*"(0*&,"(JLe[O>(Y&2"&="2/(B0&28%'(3!!"2$!($*3$( Margo’s critical interest persists despite the fact that it may contradict *"2(12"!"'$(*311%'"!!(3'-(5&2"(%55"-%3$"(-"!%2"($&(2"53%'(3,%="(JLe[O>( Her contemporary wish to continue to experience the joys of painting meaningless pictures and eating numerous peanut butter sandwiches are only experiential interests. Therefore, they must be overridden by her previously expressed critical interest JLeM6LeLO>(B0&28%'(#&'#,7-"!($*3$(Y324&b!('"0(%'$"2"!$!(%'(13%'$%'4( and eating sandwiches cannot be considered critical because she lacks any “sense of a whole life, a past joined to a future, that could be the &.K"#$(&) (3'<("=3,73$%&'(&2(#&'#"2'(3!(3(0*&,"Q(JLeMO>(:'(&$*"2(0&2-!/(3( demented person is unable to view herself as a person with a unique past and future and is, as a result, incapable of comprehending the concept of a lifelong value or goal. Consequently, her former critical interest persists and takes precedence. ( 9&0"="2/(:(#&'$"'-($*3$(B0&28%'b!(32475"'$(%!(i30"-(%'($*3$( he underestimates the extent to which a person’s critical interests may #*3'4"(.3!"-(&'("="'$!($*3$(&##72($*2&74*&7$($*"(#&72!"(&) (3(,%)">((:'( requiring that one’s critical interests relate to “the character and value of our lives as a whole,” Dworkin has set an unreasonably high standard for 1&!!"!!%'4(#2%$%#3,(%'$"2"!$!(J1>(LeZO>(:$(!""5!(a7%$"(1,37!%.,"()&2(3(1"2!&'( to have multiple and even contradictory critical interests at different points in his life. For instance, a very successful businessman, David, who has devoted his entire life to running his company while neglecting his friends and family may one day, as a result of an unfortunate accident, sickness, or any other tragedy that occurs within the family, begin to view his life differently. He may reject his previous critical interest in prioritizing his work and develop a critical interest in being a better husband, father, or son. Although David’s new interest might not share any continuity with his previous lifelong values and long-term goals, it would seem unreasonable to deny that David has developed a new critical interest. Similarly, in Margo’s case, it is quite plausible that her critical interests have changed to such an extent that they are no longer 120

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compatible with the wish she made many years ago prior to becoming fully demented. Margo in her current state is quite different from the Margo who made that decision. Alzheimer’s Disease, just like a sudden accident, is capable of altering one’s values and interests in ways one could have never expected. David may have previously asked others to help him ensure that nothing ever came between him and his commitment to his work. Nevertheless, we would not try to convince David that his newfound interest in his family is just an experiential interest that will soon pass and rightfully give way to his lifelong and 3#$73,(#2%$%#3,(%'$"2"!$(%'(*%!(#&513'<>(:'(.&$*(#3!"!/(3'("H$"2'3,("="'$( produces a profound effect on the individual to such an extent that his and her critical interests are altered. Nevertheless, Dworkin might object to my criticism by arguing that it is impossible for Margo to develop a new critical interest due to *"2(#&'-%$%&'>(:) (Y324&(,3#8!(3032"'"!!(&) (0*3$(3(#2%$%#3,(%'$"2"!$("="'( means, how is it possible for her to decide that she would like to form 3('"0(&'"c(:'(&$*"2(0&2-!/("="'(%) (B0&28%'(0"2"($&(3##"1$(0*3$(:( have tried to establish through the example of David, he can still argue against me by asserting that the logic articulated through that example cannot be extended to Margo’s case since she lacks a few crucial qualities that David possesses, namely, competence, awareness, and the ability to 2"i"#$(&'(0*3$(#&'!$%$7$"!($*"(5&!$(%51&2$3'$($*%'4!(%'(*"2(,%)"> However, this objection amounts to a misunderstanding of 0*3$(%$(5"3'!($&(-"=",&1(3'-(42&0(&7$(&) (#2%$%#3,(%'$"2"!$!>(_'"('""-( not necessarily be completely aware of either a developing or decaying critical interest in the way that David was. For example, a father may lose touch with his son over the course of thirty years to such a great extent that his son goes from being the most important part of his life to a person with whom he barely keeps in contact. Moreover, this can occur 0%$*&7$($*"2"(*3=%'4(.""'(3(!1"#%+#(5&5"'$(%'($%5"(%'(0*%#*($*"()3$*"2( decided that his son should no longer constitute an important part of his life. Relationships can gradually deteriorate over time due to distance, work, and many other factors without either person being fully cognizant of what is happening. Dementia constitutes a similarly gradual process &) (-"$"2%&23$%&'(%'(0*%#*(%$(%!(30)7,,<(-%)+#7,$($&(8""1($23#8(&) ($*"("H$"'$( $&(0*%#*(3(1"2!&'(%!(,&!%'4(*"2(#&51"$"'#">(:$(53<(."("3!<($&($*%'8( back two years and compare Margo now with how she was then, but it is quite hard for her or an external observer to notice any changes on a day-to-day basis. Therefore, we can say that Margo’s critical interests have changed in the ten years she has suffered from dementia without having $&(1%'1&%'$($*"(!1"#%+#(5&5"'$(%'($%5"(%'(0*%#*($*"(#*3'4"(&##722"->( Furthermore and more importantly, Margo need not have been an active 121

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participant in bringing about the change. Both the father who gradually loses touch with his son and Margo undergo a gradual transformation of critical interests without ever sitting down and deciding to change their critical interests. Margo’s critical interests may now include a desire to continue living since each day of her life brings happiness to her. This is still the case even if all of the pleasure she experiences is derived from painting silly pictures or eating peanut butter sandwiches. Since it seems clear that she thoroughly enjoys herself each day, it follows that she no longer possesses the critical interest in not having her life prolonged in an advanced stage of dementia. Thus, Dworkin’s inability to account for the possibility that a demented person’s critical interests can change &="2($%5"(#&'!$%$7$"!(3(#27#%3,(i30(%'(*%!(32475"'$>(@"2*31!(&72(%'%$%3,( intuition regarding the act of withholding medicine from a demented patient like Margo is consistent with a rational and philosophical examination of the issue after all. Works Cited Dworkin, Ronald. Life’s Dominion: An Argument About Abortion and d7$*3'3!%3>(`&'-&'n((9321"2(E&,,%'!(@7.,%!*"2!/([WWe>

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Are the CDCâ&#x20AC;&#x2122;s Revised Standards of HIV Testing Ethically Sound? Alex Niculescu â&#x20AC;&#x2122;12 University of Pennsylvania

1&'(2"=%"0%'4($*"(EBEb!(12&1&!"-(2"=%!"-(!$3'-32-!()&2(9:;( $"!$%'4(%'(#&'="2!3$%&'(0%$*(X%5&$*<(Y721*<b!(PG'&'<5&7!(9:;( S"!"32#*Q(#3!"(!$7-</(:(03!(.&$*(*"32$"'"-(.<($*"(12&42"!!(53-"(3'-( discouraged by some anachronistic standards upheld by the revisions. ?*%,"($*"(5&$%=3$%&'!(."*%'-($*"(2"=%!"-(!$3'-32-!()&2(9:;($"!$%'4(%'( 3'&'<5&7!/(#&'+-"'$%3,/(&2(&$*"2(!"$$%'4!(32"(0",,6%'$"'$%&'"-/($*"2"( is reason to maintain some ethical misgivings that tie to the history of G:BA(3!(3(#&51,"H(!<'-2&5"(%'($*"(DA>( ( X*"(EBE(%!(2%4*$($&(-")"'-($*"('"#"!!%$<()&2(3'&'<5&7!(9:;( testing at all, understanding that solely enrolling voluntary participants in epidemiological studies will not give a true picture of the prevalence &) (9:;(%')"#$%&'(J[O>(G!(3(!$32$%'4(1&%'$()&2(2"=%!%&'(&) ($"!$%'4(!$3'dards, this is as an ethically valid concern because it universalizes the infection in an attempt to create a holistic, honest representation of its prevalence by expanding the pool of potential participants in epidemio,&4%#3,(!$7-%"!>(9&0"="2/($*"(EBEb!(K7!$%+#3$%&'()&2($*%!($72'($&032-!( anonymity still references ongoing stigma regarding seropositive status %'($*"(DA>(G!(Y721*<(%'$2&-7#"!/(PA&5"$%5"!(1"&1,"(3$(2%!8()&2(9:;( infection decline to be tested because they are worried that doing so will disrupt relationships and endanger their employment and insurabil%$<Q(J5<("51*3!%!O(JeZO>(9%!(3'-($*"(EBEb!(7!"(&) ($*"($"25(P3$(2%!8Q(%!( reminiscent of the notion of risk groups, which heightened the cultural 1*"'&5"'&'(&) (G:BA(%'($*"(UM!(.<(1&%'$%'4(.,35"(3$(3,2"3-<(5324%'alized social groups. This terminology did a disservice to these communities by failing to analyze the underlying risky behaviors common $&(53'<(%'($*&!"(42&71!>(:'([WUU/(A7!3'(A&'$34(02&$"($*3$(PG:BA(%!( understood in a premodern way, as a disease incurred by people both as %'-%=%-73,!(3'-(3!(5"5."2!(&) (3(P2%!8(42&71Qv$*3$('"7$23,6!&7'-%'4/( bureaucratic category which also revives the archaic idea of a tainted #&557'%$<($*3$(%,,'"!!(*3!(K7-4"-Q(J[eNO>(C<(!3<%'4(P1"2!&'!(3$(*%4*( 2%!8()&2(9:;(%')"#$%&'(!*&7,-(."(!#2""'"-(3$(,"3!$(3''73,,<Q(JC23'!&'("$( 3,>O(J5<("51*3!%!O/($*"(EBE(%!(!$%,,(1,3<%'4(&'($*"(!&#%3,(*%!$&2<(%'($*%!( 123

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country that certain “tainted communities” have been judged by illness, and Murphy suggests that anonymous testing should in part be motivated by attempting to identify these people despite the social stigmatization towards seropositivity that prevents them from openly volunteering )&2(9:;($"!$%'4(JeZO>(:(35(*311<($&(0%$'"!!($*"(EBE(3##"1$3'#"(&) ( wider studies of infection beyond socially pre-determined risk groups, but it still seems motivated by an understanding of risk groups spreading infection, and not risky behaviors. While this starting point attempts to progress beyond the simple notion of self-selected risk groups by acknowledging that there are those who participate in risky behaviors without claiming the identity of a socially pre-determined risk group, it seems rooted in an antiquated notion of understanding infection as beginning in risk groups at all. Thus, the CDC’s attempts to universalize infection fall short by maintaining a medically individualizing perspective. ( F&2($*"(2"!$(&) ($*%!(131"2/(:(0%,,(13%2(3'(3'3,<!%!(&) ($*"(EBEb!( 2"=%!"-(!$3'-32-!(&) (9:;($"!$%'4(%'(3,,(!%$73$%&'!(0%$*(3(2"=%!"-(13$%"'$6 centered model, similar to one used by Alice Dreger in her chart on PA*%)$%'4($*"(@323-%45(&) (:'$"2!"H(X2"3$5"'$>Q(B2"4"2b!(#*32$(#&5132"!( her patient-centered model to an anachronistic concealment-centered &'"/(3'-(*"2"(:(.",%"="($*"(&11&!%$"($&($*"(13$%"'$6#"'$"2"-(5&-",(0&7,-( be the CDC’s disease-eradication model, which focuses all efforts on eradicating what is now a chronic, treatable disease, and not on treating 13$%"'$!(3!("51&0"2"-/(5"-%#3,(!7.K"#$!>(:'(5&-%)<%'4($*%!(5&-",($&(+$( !"2&1&!%$%=%$</(:(.",%"="($*"(5&!$(5"-%#3,,<("$*%#3,(-"#%!%&'!(32"($*&!"( which place both the patient’s rights and patient’s health at the forefront. To many, this may seem like a given, as any federal institution concerning health care ought to concern itself with both rights and *"3,$*>(:'!$"3-/(%$(%!($*"(P13$%"'$Q(132$(&) ($*%!(3'3,<!%!($*3$(%!(#&'$"51&232<(0%$*(B2"4"2b!(1323-%45(!*%)$>(:'(&2-"2($&(12&$"#$(13$%"'$!b(2%4*$!/( bioethics must concern itself with reducing stigma and obtaining in)&25"-(#&'!"'$>(:'(&2-"2($&(12&5&$"(13$%"'$!b(*"3,$*/(:(.",%"="($*"('&'6 judgmental bioethicist must be concerned with preventing transmission of infection, counseling those who are infected, and most of all, educating the masses about the dangers involved with certain risky behaviors, rather than simply demonizing the entire disease by striving for eradication. The latter often ends up also demonizing patients associated with the disease, as their positive status often reveals them as members of “a #&557'%$<(&) (132%3*!Q(.<(#&'+25%'4($*"%2(%-"'$%$<($&($*"(4"'"23,(1&17,3$%&'(JA&'$34([[L6[[eO>(X*7!/(3(13$%"'$6#"'$"2"-(5&-",(0&7,-(12&5&$"( 124

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healthy living for any life experience, instead of unsuccessfully attempting to completely eradicate risky behaviors through stigma or neglect. :) (2%!8(2"-7#$%&'("))&2$!(32"(#&5.%'"-(0%$*("-7#3$%&'(3'-(2&&$"-(%'(3( patient-centered model that accepts many ways of living, this could also lead to a reduction of stigma. Bioethics should shy away from creating a binary between risky and risk-free behaviors, which provides a false !"'!"(&) (!"#72%$<(3'-(%!(*%!$&2%#3,,<(,%'8"-($&(%-"'$%$<(42&71!>(:'!$"3-/( comprehensive, holistic education that acknowledges the spectrum of behaviors we all participate in could help to promote healthier lifestyles for everyone. Murphy discusses an anonymous study planned by the CDC that “’unlinks’ the identity of the donors from the samples and would test the blood without knowing whose it was” but also does not “ordinarily request the consent of donors or notify them that their .,&&-(*3!(.""'($"!$"-Q(JeZO>(X*%!(12"!"'$!(!"="23,("$*%#3,(%!!7"!(3$(!$38"/( mainly regarding patient rights and health. The desire for anonymity is admirable, but the way it is conducted fails at the nexuses of both rights and health of the patient. By not requesting the consent of donors and then not notifying them that their blood has been tested, the CDC would ignore the importance of informed consent, and also the health implications of a potentially positive test. The motivation behind not informing donors of testing, or requesting consent, is that it will be harder to achieve a fuller representation of the presence of the virus if a patient must acknowledge to oneself that they are being tested for 3(#7,$723,,<6!$%453$%f"-(%,,'"!!/(0*%#*(53'<(53<(."(7'0%,,%'4($&(-&>(:'( his case study, Murphy shows how the Canadian medical board pro=%-"-(3'(3--%$%&'3,(2"#&55"'-3$%&'($*3$()7,+,,!(3(5&-",(#"'$"2"-(&'( 13$%"'$(*"3,$*/(.<(2"a7%2%'4(P3'&'<5&7!(9:;(!#2""'%'4(&##72(&',<(%'( #&'#"2$(0%$*(!%57,$3'"&7!(17.,%#("-7#3$%&'(3.&7$(9:;Q(JeZO/(0*%#*( pairs anonymous screening that may violate patient’s rights by ignoring informed consent with an attention to patient’s health through preven$3$%="("-7#3$%&'>(C"#37!"(&) (*%!$&2%#3,(!$%453(3$$3#*"-($&(9:;/(0*%#*( will inevitably lead some people to exclude their blood from testing if consent is required, it may be impossible to create a perfect anonymous !$7-<($*3$()7,+,,!($*"(2"a7%2"5"'$!(&) (.&$*(13$%"'$(2%4*$!(3'-(*"3,$*R( however, it is possible to make strides in the right direction by focusing &'(132$%3,()7,+,,5"'$(&) ("3#*(132$(&) (3(13$%"'$6#"'$"2"-(5&-",> The CDC’s revisions, unfortunately, sidestep not only one, but often both parts of a patient-centered model on rights and health. 125

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X*"(LMM\(13'",b!(12&1&!"-(2"=%!"-(!$3'-32-!()&2(13$%"'$!(%'(3,,(*"3,$*6 care settings starts off well, by recommending screening for “patients %'(3,,(*"3,$*6#32"(!"$$%'4!(3)$"2($*"(13$%"'$(%!('&$%+"-($*3$($"!$%'4(0%,,(."( 1"2)&25"-(7',"!!($*"(13$%"'$(-"#,%'"!(J&1$6&7$(!#2""'%'4OQ>(JC23'!&'("$( al.) This suggestion acknowledges patients’ rights by attempting to gain informed consent, and also does its part to reduce stigma by universalizing testing procedures, since the screening is recommended for patients %'(P3,,(*"3,$*6#32"(!"$$%'4!Q(J5<("51*3!%!O>(9&0"="2/($*"('"H$($*2""(!74gestions undo much of the progress made above. The second sugges$%&'/($*3$(P1"2!&'!(3$(*%4*(2%!8()&2(9:;(%')"#$%&'(!*&7,-(."(!#2""'"-()&2( 9:;(3$(,"3!$(3''73,,<Q(JC23'!&'("$(3,>O(343%'(=%&,3$"!(13$%"'$!b(2%4*$!(.<( reinforcing stigma attached to so-called “risk groups,” rather than con#"'$23$%'4(&'(2%!8<(."*3=%&2!>(X*"(7'%="2!3,%f3$%&'()2&5($*"(+2!$(!744"!tion is completely undone by the individualization of the disease in the second suggestion. The third suggestion, that “separate written consent )&2(9:;($"!$%'4(!*&7,-('&$(."(2"a7%2"-R(4"'"23,(#&'!"'$()&2(5"-%#3,(#32"( !*&7,-(."(#&'!%-"2"-(!7)+#%"'$($&("'#&513!!(#&'!"'$()&2(9:;($"!$%'4Q( JC23'!&'("$(3,>O(%!($2%#8<($"223%'/(.7$(!""5!(3(-"#"'$(#&512&5%!"(."$0""'( 13$%"'$b!(2%4*$!(3'-(*"3,$*>(:) (!"1323$"(02%$$"'(#&'!"'$()&2(9:;($"!$%'4( were required, it would likely reinforce stigma attached to the infection, 0*"2"3!(4"'"23,(5"-%#3,(#&'!"'$($*3$("'#&513!!"!(9:;($"!$%'4(!$%,,( prioritizes patients’ rights while also avoiding selection bias. This simultaneously casts a wider net of patients to test, which maintains a focus on 13$%"'$(*"3,$*>(A7#*(3()&#7!(&'(13$%"'$(*"3,$*(J3$($*"("H1"'!"(&) ("H1,%#%$,<( informed consent) is all but undone by the fourth suggestion, that “pre="'$%&'(#&7'!",%'4(!*&7,-('&$(."(2"a7%2"-(0%$*(9:;(-%34'&!$%#($"!$%'4/( &2(3!(3(132$(&) (9:;(!#2""'%'4(12&4235!(%'(*"3,$*6#32"(!"$$%'4!Q(JC23'!&'( et al.). This clearly violates patient’s health by ignoring the importance of 12"="'$%&'("-7#3$%&'>(:'()3#$/(:(+'-($*%!(!744"!$%&'(.3)i%'4R(0*<(0&7,-( %$(."(_q($&('&$("-7#3$"("="2<.&-<(3.&7$(2%!8!(%) (<&7(32"(!#2""'%'4($*"5( for an infection transmitted through risky behaviors? What is suggested by this lack of comprehensive education is a reliance on the failed logic that certain groups are more at risk than others purely because of their identity, when instead casting a wider net and educating everybody about how to reduce risk within certain behaviors will do more to prevent new incidences. The suggestions for pregnant women are all the same except for the last one, that “repeat screening in the third trimester is recommended %'(#"2$3%'(K72%!-%#$%&'!(0%$*(","=3$"-(23$"!(&) (9:;(%')"#$%&'(35&'4(12"4126

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'3'$(0&5"'>Q(JC23'!&'("$(3,>O(?*%,"($*%!(53<(538"(!$3$%!$%#3,(!"'!"/(%$( again fails the patient at the nexus of rights by reiterating the notion that #"2$3%'(1&17,3$%&'!(3'-("="'(,&#3,"!(32"(5&2"(3$62%!8()&2(9:;(%')"#$%&'( than others, which heightens stigma directed at already-marginalized populations and geographical locations. The CDCâ&#x20AC;&#x2122;s revised standards should go through a second set of revisions, one that places the patient at the center of its testing proce-72"!>(A%'#"(9:;(%!('&(,&'4"2(3(-"3$*(!"'$"'#"/(.7$(23$*"2(3(#*2&'%#/( treatable illness, the CDC has a vested interest in prioritizing a reduction of stigma through education and informed testing along with risk reduction. Following these practices, more people will be willing to participate in testing, enabling the agency to more accurately monitor the spread of 9:;>( Works Cited C23'!&'/(C"2'32-/("$(3,>(PS"=%!"-(S"#&55"'-3$%&'!()&2(9:;(X"!$%'4( of Adults, Adolescents, and Pregnant Women in Health-Care Settings.â&#x20AC;? Centers for Disease Control and Prevention. 22 Nov. LMM\>(?".>([Z(B"#>(LM[M>(s*$$1ngg000>#-#>4&=g5502g12"=%"0g5502*$5(,g22ZZ[N3[>*$5t B2"4"2/(G,%#">(A*%)$%'4($*"(@323-%45(&) (:'$"2!"H(X2"3$5"'$>(?".>(000> isna.org. Murphy, Timothy F. Case Studies in Biomedical Research Ethics. Cam.2%-4"/(Y3!!3#*7!"$$!n(Y:X(@2"!!>(LMMN>(@2%'$>( A&'$34/(A7!3'>(:,,'"!!(3!(5"$31*&2R(3'-/(G:BA(3'-(%$!(5"$31*&2!>(l"0( k&28n(@%#3-&2/([WWM>(@2%'$>>

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The Evolution and Principles of Informed Consent in Population Genetics Santiago Jose Molina ’12 University of Chicago

ith the rapid advancement of technological means of analyzing genetic data and obtaining full genomes with ease, large-scale, population-wide projects have generated unprecedented amounts of re!"32#*(3.&7$(*753'(4"'"$%#(=32%3$%&'(3'-(%$!(#&''"#$%&'($&(-%!"3!">(_'"( of the major factors behind the success of this ongoing genomic revolution is the willingness of large numbers of individuals from different ethnic and cultural backgrounds to donate DNA samples. Following the 9753'(V"'&5"(@2&K"#$(J9V@O/($*"(13!$(-"#3-"(*3!(!""'(3('75."2(&) ( international efforts to collect genetic data from thousands of individuals from different ethnic, religious and sociopolitical backgrounds. These sci"'$%+#(&243'%f3$%&'!(*3="(2"!7,$"-(%'('75"2&7!/(,324"/(17.,%#,<(3##"!!%.,"( databases. As these large-scale projects continue to evolve and increase in number, efforts to ensure the ethical conduct of research and to address 17.,%#(#&'#"2'(*3="(#,&!",<()&,,&0"->(l&$3.,</($*"(:'$"2'3$%&'3,(931Y31( Project1 built on the ethical lessons of past endeavors in genomics and has been a valuable source of much knowledge and innovation in international bioethics. Biomedical ethicist, Bartha M. Knoppers, has argued $*3$(#,3!!%#3,(P!$3$%#Q("$*%#3,(5&-",!(32"(%'!7)+#%"'$()&2()7,,<(3--2"!!%'4( social consequences of DNA sampling. instead ethicists and policymakers have adopted more complex and ‘plastic’ ethical models.2 However, the idiosyncratic contexts in which genomics projects occur and rapid "=&,7$%&'(&) (!#%"'$%+#(8'&0,"-4"(#&'$%'7"($&(12"!"'$(!%4'%+#3'$(#*3,lenges for policy makers, review boards, participants and researchers worldwide. 9"2"/(:(0%,,($&(12&=%-"(3(*%!$&2%#3,(3##&7'$(&) ($*"("$*%#3,(31proaches employed by The HapMap Project in order to analyze current trends in bioethics. As we will see, the principles for framing informed #&'!"'$(*3="(#*3'4"-(%'($*"(13!$(-"#3-"(3'-(*3="(3-31$"-($&(."+$(1&17lation genetics; to wit, attention has shifted from the individual to the 1 (_'(%$!(0".!%$"/(X*"(931Y31(@2&K"#$(-"+'"!(%$!",) (3!(Pa multi-country effort to identify and catalog genetic similarities and differ"'#"!(%'(*753'(."%'4!>Q(C2%"i</($*"(@2&K"#$(3%5!($&(12&=%-"()2"",<(3##"!!%.,"(4"'"$%#(-3$3()2&5(57,$%1,"(1&17,3$%&'!>(A""n(*$$1ngg*31531>'#.%>',5> '%*>4&=g$*"*31531>*$5,>"'(JG##"!!"-([[gMZgLM[[O 2 (q'&11"2!/(CY(JLMMWO(V"'&5%#!(3'-(1&,%#<538%'4n()2&5(!$3$%#(5&-",!($&(#&51,"H(!<!$"5!c(Hum Genet. [LZne]Zze]W

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community.3 This shift has brought with it a new array of ethical discussion about the ways in which informed consent can retain its validity in the context of moral pluralism, as well as the way in which it can address 2%!8($&(3(42&71(&) (%'-%=%-73,!>(F2&5($*%!(:(0%,,(%,,7!$23$"($*"(12%'#%1,"( of “Respect for the Community” in biomedical research, as well as the ."'"+$!(3'-(,%5%$3$%&'!(&) (%$!("')&2#"5"'$>(:'("))"#$/(.<(12&=%-%'4(3( descriptive and analytical account of the community-based ethic used by $*"(931Y31(@2&K"#$/(:(&))"2(!&5"(123453$%#(#&'!%-"23$%&'!()&2($*"(1,3#"( of informed consent in population genetics. I. Background :'($*%!(!"#$%&'(:(0%,,(12&=%-"(3(#&'#%!"(.3#842&7'-(%'(&2-"2($&( !%$73$"($*"(-%!#7!!%&'!()&7'-(%'($*%!(32$%#,">(F%2!$,</(:(0%,,(!%$73$"(%$(*%!$&2%cally in relation to early bioethical models applied in genetics, as well as in relation to the controversies of the Human Genome Diversity Project J9VB@O($*3$(3'$"#"-"-($*"(931Y31(@2&K"#$>(A"#&'-,</(:(0%,,(12&=%-"(3( philosophical grounding rooted in a framework of value pluralism. From this we will reasonably see that the ‘community’ is the relevant unit to bare the risks of participation in contemporary genomic research and population based DNA sampling. Moreover, Firstly, models of informed consent have been founded on a number of classical ethical principles, originating from medical ethics 3'-(*753'(2%4*$!>(:'($*"([WWMb!/(%')&25"-(#&'!"'$()&2(*753'(4"'"$%#( research developed out of the classical physician-patient relationship and models found in clinical ethics. These medical models acted on the level of the individual, and found their grounding on the Principle of Auton&5<(3'-(:')&25"-(E*&%#">4,5,\ Additionally, early informed consent mod",!(%'($*"(#&'$"H$(&) (4"'"$%#(2"!"32#*(0"2"(%'i7"'#"-(.<(%'$"2'3$%&'3,( declarations and statements from the ethics committees of international .&-%"!(,%8"($*"(?&2,-(9"3,$*(_243'%f3$%&'(J?9_O(&2(DldAE_>(F&2( %'!$3'#"/($*"(2"#&55"'-3$%&'(%'([WW[()2&5($*"(E&7'#%,()&2(:'$"2'3$%&'3,( _243'%f3$%&'!(&) (Y"-%#3,(A#%"'#"!(JE:_YAO($*3$n( Po#y&'!"'$(%!(%')&25"-(0*"'(%$(%!(4%="'(.<(3(1"2!&'(0*&(7'derstands the purpose and the nature of the study, what participation 3 (:'(&2-"2($&(12&=%-"(!&5"(#,32%$</(:(0%!*($&(.2&3-,<()235"($*"(7!"(:(0%,,(."(4%=%'4(u#&557'%$<b(%'(5<(3'3,<!%!n(3(7'%$"-(3'-(!$27#$72"-( 42&71(0%$*(*"$"2&4"'"&7!(.",%")!($*3$(*3!(!*32"-(%'$"2"!$!(%'(%$!",) (3'-($*"()7$72"(&) ($*3$(.&-<>(G!(0"(0%,,(!""/(32.%$232<(-"+'%$%&'!(&) (u#&557'%$<b( 3'-(u1&17,3$%&'b(12"!"'$(!%4'%+#3'$(#*3,,"'4"!($&($*"(5&-",(:(*"2"(-"!#2%."> 4 Network of Applied Genetic Medicine. Statement of principles: human genomic research(Js*$$1ngg000>2543>a#>#3g"'g%'-"H>*$5tg Network of Applied Genetic Medicine, Montreal, 2000). 5 (DldAE_(:'$"2'3$%&'3,(C%&"$*%#!(E&55%$$"">(:'$"2'3$%&'3,(-"#,323$%&'(&'(*753'(4"'"$%#(-3$3(JDldAE_/(@32%!/(LMMeO> 6 Wachbroit, R. and D. Wasserman. Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling.

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%'($*"(!$7-<(2"a7%2"!($*"(1"2!&'($&(-&(3'-($&(2%!8/(3'-(0*3$(."'"+$!( 32"(%'$"'-"-($&(2"!7,$()2&5($*"(!$7-<(jo0y*"'(%$(%!('&$(1&!!%.,"($&( request informed consent from every individual to be studied, the agreement of a representative of a community or group may be sought, but the representative should be chosen according to the nature, traditions and political philosophy of the community or the 42&71>Q(JY<("51*3!%!O] While this statement recommends that a group leader be sought for consent in the stead of all individuals, it is still as a secondary measure; the individual continues to receive priority. Still, this passage represents a deeper advance toward a community-based ethic. Namely that the open-ended nature of a human rights model lends itself to a #&'$"H$6!1"#%+#("$*%#!/(%'(0*%#*($*"(2"!"32#*"2(&2(&243'%f3$%&'(%'$"212"$!( a principled claim in light of the social and linguistic idiosyncrasies of the participant, and only then can informed consent become practical. Thus, while medical informed consent models operate at the level of the individual, international human rights models begin to take into account the importance of cultural diversity and the group in framing informed consent. A second driver for the adoption of a model of consent oriented towards the community was the public controversy surrounding the failure of the HGDP and the corresponding ethical deliberations that followed. While dating back to the eugenics movement,U concerns about the communal and racial implications of genetics, began to directly bear on bioethical models during ethical deliberation about the Human V"'&5"(@2&K"#$(J9V@O(%'([WWM>(X*"'(57#*(5&2"()&2#%.,<()&,,&0%'4($*"( controversy surrounding the collapse of HGDP.W This project aimed to collect blood and other human tissue samples ‘genetically distinct’ indigenous populations around the world. Yet the projects members were in -%!342""5"'$(3.&7$(*&0($&(-"+'"($*"(42&71!($*"<(03'$"-($&(!$7-<>(A$%,,( -72%'4(%$!(%'%$%3,(1,3''%'4(1*3!"!/(%'([WWe($*"(9VB@(03!(5"$(0%$*(="*"ment criticism from indigenous rights activists, which claimed that the sovereignty of the targeted indigenous communities had been violated.10 :'(3'("32,<(3$$"51$($&(3--2"!!($*"!"(#&'#"2'!/($*"(G5"2%#3'(S"4%&'3,( 7 (E:_YA(J[WW[O>(X*"(B"#,323$%&'(&) (:'7<353n(9753'(4"'&5"(5311%'4/(4"'"$%#(!#2""'%'4(3'-(4"'"($*"231<>(:'(uuV"'"$%#!(d$*%#!( 3'-(9753'(;3,7"!/(@2&#""-%'4!(&) ($*"(xx:;$*(E:_YA(S&7'-(X3.,"(E&')"2"'#"bb(Jm>(C3'8&0!8%(3'-(G>(Y>(E312&'/(d-!>O(V"'"=3> 8 (q'&11"2!/(C>(Y>(T(E*3-0%#8/(S>(The Human Genome Project: under an international ethical microscope. Science265, 2035–2036 (1994). 9 Literature on the outcomes and controversies of the HGDP are numerous. For an in depth account of the internal discourse and aims of the project see S"32-&'/(p>(JLMM[O(X*"(9753'(V"'&5"(B%="2!%$<(@2&K"#$(6(G(E3!"(A$7-<(%'(E&12-7#$%&'(Social Studies of Science 2001 31: eZ]>(F&2(3'("'434%'4(3'-(5"$*&-&,&4%#3,,(%'$"2"!$%'4(!$7-<(&) ($*"(.%&"$*%#3,(&7$#&5"!(&) ($*"(9VB@(!""(C2&3-0%'/(@>(JLMMZO(PC%&"$*%#!(%'(G#tion” and Human Population Genetics Research. Culture, Medicine and Psychiatry 29:([NZz[]U/(LMM 10 (C2&3-0%'/(@>(JLMMZO(Ibid.(@>[NW

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E&55%$$""(JGSEO/(&) ($*"(9VB@/(-23)$"-(3(Y&-",(d$*%#3,(@2&$&#&,( JYd@O(%'([WWZ(3'-(2","3!"-($*"(-&#75"'$(%'([WW]>(?*%,"('"="2(3-&1$"-( .<($*"(9VB@/($*%!(12&$&#&,(03!(&'"(&) ($*"(+2!$($&(-%2"#$,<(2"a7%2"(42&71( consent in addition to individual consent via “culturally appropriate” authorities.11 X*7!/(.<($*"(,3$"([WWMb!(&243'%f3$%&'!/(.&$*(!#%"'$%+#(3'-(1&,%$%cal, also recognized that what counts as meaningful informed consent changes with prevailing cultural norms and that the political sovereignty of study populations needed to be respected.12 Effectively, the Human V"'&5"(_243'%f3$%&'(d$*%#3,/(`"43,/(3'-(A&#%3,(:!!7"!(E&55%$$""( J9DV_6d`A:O(!"$()&2$*(=32%&7!(12%'#%1,"-(2"#&55"'-3$%&'!()&2(%'$"2'3$%&'3,(#&,,3.&23$%="(2"!"32#*/(0*%#*(0"2"(3-&1$"-(.<(9DV_(%'([WW\( in the Statement on the Principled Conduct of Genetic Research.13,14 A1"#%+#3,,</($*"(A$3$"5"'$(!3<!($*3$(%')&25"-(#&'!"'$($&(132$%#%13$"(#3'( be individual and at the level of the community; also that cultural and community values must be respected. Such were the notions that helped frame the ethical guidelines and the form of informed consent in the :'$"2'3$%&'3,(931Y31(@2&K"#$(%'(LMML> `3!$,</(%'(&2-"2(3--2"!!($*"(#&'#"2'($*3$(3(P#&'$"H$6!1"#%+#Q(3'-( 1,723,%!$("$*%#("'$3%,!(5&23,(2",3$%=%!5/(:(0%!*($&(1*%,&!&1*%#3,,<(42&7'-( my discussion of informed consent in the context of moral diversity. F%2!$/(%'($*%!(131"2(:(-&('&$(%'$"'-($&(2"!&,="($*"(7'%="2!3,%!5(="2!7!( particularism debate in bioethics, but to offer a pragmatic solution, as other have done before,15 which maintains the validity of robust principles and embraces moral diversity. Hence by reiterating the presence &) ($*"(12%'#%1,"(&) (PS"!1"#$()&2(E&557'%$<Q(%'(.%&5"-%#3,("$*%#!/(:(35( attempting to provide scaffolding for more complex models of informed consent that account for a diversity of worldviews. Still, respecting moral diversity entails more than knowing what the moral beliefs and norms &) (3(#7,$72"(32">(:'(&2-"2()&2(3(1,723,%!$()235"0&28($&($38"("))"#$(&'"( must acknowledge the validity and give equal importance to the moral doctrines of others. Additionally, in order to avoid relativism, a pluralist framework must emphasize the sympathetic capabilities of moral agents and the possibility of meaningful dialogue between peoples of different 11 (V2"",</(9>(J[WW]O(X*"(d$*%#!(&) (9753'(V"'&5"(B%="2!%$<(@2&K"#$n(X*"(l&2$*(G5"2%#3'(S"4%&'3,(E&55%$$""b!(@2&1&!"-(Y&-",( Ethical Protocol. In(9753'(BlGn(`30(3'-(@&,%#<>(C>Y>(q'&11"2!/("->/(11>(LeWzLZ\>(9347"/($*"(l"$*"2,3'-!n(q,70"2(`30(:'$"2'3$%&'3,>( 12 (q'&11"2!/(C>Y>("$(3,>(J[WW\O(Ethical Issues In International Collaborative Research on the Human Genome: the HGP and the HGDP. GEl_Y:EA(eN/(L]L(z(LUL(GSX:E`d(l_>(MLU] 13 (G=3%,3.,"(3$n(*$$1ngg000>"7.%&!>%')&g9DV_>*$5 14 (q'&11"2!/("$(3,>(J[WW\O(Ibid.(L]W 15 (:'(132$%#7,32/($*"(0&28!(&) ("$*%#%!$!(p"))"2<(A$&7$/(V,"''(Y#V""/(p&'3$*3'(Y&2"'&/(Y3$$*"0(C3#*"$$3(3'-(p&!"1*(F%'!(32"(12%5"( "H351,"!(&) ($*"(2&,"(&) (123453$%!5(%'(.%&$*%#!>(A""(B723'$"/(E>(JLMMWO()&2(3(#&512"*"'!%="(-%!#7!!%&'(&) (-%))"2"'$()&25!(&) (1,723,%!5(%'(.%&"$*ics.

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moral, religious and cultural upbringings.[\ As we will see, the need for ongoing dialogue and the respect for different community and cultural =3,7"!(0"2"("5.&-%"-(%'($*"("$*%#3,()235"0&28("51,&<"-(%'($*"(:'$"2'3tional HapMap Project. II. Informed Consent in the HapMap Project :'($*%!(!"#$%&'/(:(0%,,(4%="(3(.2%") (&="2=%"0(&) ($*"("$*%#3,()235"work employed by the HapMap Project and describe the methodology !"$()&2$*(.<($*"(dÀ:>(X*%!(3##&7'$(0%,,(!"2="($&("H"51,%)<(3#$73,(.%&"$*ical practices that employed a community-based approach to informed consent in the context of cultural plurality. Additionally, it will introduce the main actors responsible of ensuring the ethical success of the Proj"#$n($*"(dÀ:/(,&#3,(4&="2'5"'$!/(E&557'%$<(G-=%!&2<(V2&71!(JEGVO( and the culturally diverse donors. As a practical measure, during the formational stages of HapY31/($*"(dÀ:(-&#75"'$"-(3(4"'"23,(P$"51,3$"Q(0*%#*(0&7,-(."(7!"-( $&(&.$3%'(%')&25"-(#&'!"'$()2&5($*"(L]M(132$%#%13'$!($*3$(0"2"(4&%'4($&( donate samples.[](X*"(#&'!"'$()&25!(0"2"($*"'(5&-%+"-($&(."(P#7,$72ally appropriate” in the corresponding community. These communities %'#,7-"-($*"(k&72.3()2&5(:.3-3'/(l%4"2%3(JkS:OR(7'2",3$"-(%'-%=%-73,!()2&5(X&8<&/(p313'(Jp@XOR($*"(93'()2&5(C%"K%'4/(E*%'3(JE9COR(3'-( %'-%=%-73,!(&) (d72&1"3'(3'#"!$2<(%'(D$3*/(D'%$"-(A$3$"!(JEdDO>(X*"( 5&-%+#3$%&'!(0"2"(53-"(.<($*"(2"!"32#*"2!(0*&("'434"-($*"(#&557'%ties prior to submitting of the forms for approval by local ethical com5%$$""!>(A351,"!(2"$3%'"-(1&17,3$%&'(3'-(!"H(%-"'$%+"2!/(.7$(3'<(,%'8( $&($*"(%'-%=%-73,(-&'&2(03!(2"5&="-(J3'&'<5%f"-O>(D',%8"(!&5"(5&2"( recent database projects, no medical or phenotypic information about the sample donors was included in the HapMap release.[U :'(&2-"2($&("'!72"($*3$(!$7-<(1&17,3$%&'(*3="(!&5"(!$38"(%'( $*"(3%5!(&) ($*"(@2&K"#$/($*"(dÀ:(V2&71(3#8'&0,"-4"-($*"('"#"!!%$<( of community engagement before individual informed consent could be obtained. Moreover, that this interaction should continue after the !351,"!(0"2"(#&,,"#$"->(:'(2"#&4'%$%&'(&) ($*"()3%,72"!(&) ($*"(9VB@(3'-( the extensive discussion in the international bioethics community, the HapMap project made community engagement a cardinal aspect of its plan. The aim of the public consultation for the HapMap Project was, 16 (B723'$"/(JLMMWO(Bioethics in a pluralistic society- bioethical methodology in lieu of moral diversity. Med Health Care and Philos JLMMWO([LneZzN] 17 Available at: http://hapmap.ncbi.nlm.nih.gov/consent.html.en 18 (X*"(:'$"2'3$%&'3,(931Y31(E&'!&2$%75/(JLMMNO(Integrating ethics and science in the Internation HapMap Project. Nature Reviews: Genet%#!>(;&,>(Zn(N\]6N]Z

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“to give people in the communities that were being approached for participation an opportunity to share with investigators their views on the ethical, social and cultural issues that the Project raises for them and their communities, and to provide some input into the way their samples would be collected and described.”[W The actual community consults were carried out under the auspices of local government and ethics committees. The consultation teams included individuals with expertise in genetics, bioethics, and social science. Additionally, collaborating institutions and funding agencies also participated in the public discussions. ( :'(3--%$%&'($&($*"(#&557'%$<(#&'!7,$3$%&'($"35!/(3(E&557'%$<( G-=%!&2<(V2&71(JEGVO(03!("!$3.,%!*"-(%'("3#*(#&557'%$<($&(3--2"!!( concerns about future uses of the samples. Each CAG served as an intermediary between the community from which the samples were collected and the biobanks where the samples would be stored, the Coriell :'!$%$7$">((:) (0%$*-2303,(&) ($*"(!351,"!(0"2"(2"a7"!$"-/(%$(0&7,-(*3="($&( be the entirety of the community’s samples, for the names of the individual were not included with the samples. Even if this rare circumstance were to occur, the genotype data that has been made publicly available through the HapMap database could not be removed. Finally, the CAGs are also meant to ensure that ongoing community consultation continues after the data is collected. :'$"2"!$%'4,</($0&(&) ($*"(5&!$("51*3!%f"-(,%5%$3$%&'!(&) (#&557nity engagement that the HapMap Consortium reported were: a tension between the need for adequate time to engage communities and the '""-($&(&.$3%'(!351,"!(&'($*"($%5"$3.,"(-2%="'(.<(!#%"'$%+#(3'-()7'-%'4( 123#$%#3,%$%"!R(3'-(3'(%'#2"3!"(%'($*"(@2&K"#$b!("H1"'!"!>(G!($&($*"(."'"+$!/( the Consortium describes the usefulness of the community meetings to communicate information about the project to the public and the creation an atmosphere of openness and trust.20 IV. “Respect for Community” as a Principle of Research Ethics ( G!("H"51,%+"-(.<($*"(931Y31(@2&K"#$/($*"(%51&2$3'#"(&) (%'#,7sion of the community in international projects aiming to learn about $*"(4"'"$%#(=32%3$%&'(."$0""'(1&17,3$%&'!(*3!(42&0'(!%4'%+#3'$,<(!%'#"( 19 20

(X*"(:'$"2'3$%&'3,(931Y31(E&'!&2$%75/(JLMMNOn(N]L (_1(#%$>(N]L6N]e

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the HGP and HGDP.21 The family of operational models: community engagement, community consultation, public consultation, community review and community discourse; have tended to dominate the ethical frameworks of projects aiming to obtain DNA samples for biobanks and public databases. Community engagement aims to address a moral concern for the interests of human groups involved in biomedical research. Some have proposed that this concern be added to Beauchamp and Childress’ foundational principles of biomedical research ethics as “Respect for Community”.22 The arguments, both in favor and against this principle have been sitting in the background of our discussion and will now be made explicit. Benefits The arguments advocating the principle generally hold that: to $*"("H$"'$($*3$($*"(!7.K"#$(&) (!#%"'$%+#(%'a7%2<(%!(3(42&71(&) (1"&1,"(0%$*( a collective identity, it is the whole group that must confront possible research risks. Therefore, the decision to take on shared risks is most appropriately made at the group level.23 This notion was seen in some of $*"(d`A:b!(#&'#"2'!(!722&7'-%'4($*"(#&'$2&="2!<(&) ($*"(9VB@>24 This conception also has consequences for the principle of individual autonomy, which has characterized informed consent in the past. The following list describes some of the arguments in favor of community engagement and group consent as practical models in biomedical research about populations: 1. F%2!$/($*3$(.%&5"-%#3,(2"!"32#*(12&K"#$!($*3$(2"432-(%-"'$%+"-(*753'( groups can have repercussions for all the groups’ members, not just the participants of the project. For example, the potential for stigmatization of study populations regarding a particular disease or trait that can carry a negative connotation by members of the same community or &$*"2!/(!7#*(3!(5"'$3,(%,,'"!!"!(&2(1*<!%#3,,<(%-"'$%+3.,"(-%!"3!"!>25 2. Secondly, that people tend to self-identify with the human groups to which they belong and not as isolated existential units. As described, individuals tend to largely adopt the values, priorities, norms, and ends 21 (q'&11"2!/("$(3,>(J[WW\O(L]U6LUM 22 (?"%K"2(E>(J[WW[O>(Protecting commuities in research: philosophical and pragmatic challenges. E35.2%-4"(I732$"2,<(&) (9"3,$*(E32"(;&,>[WnZM[6 513 23 (p7"'4!$/(d2%#(X>(JLMMeO(Community Engagement in Genomic Research: “The Slow Code” of Research Ethics; in Research Ethics, in Population and Genetics: Legal and Socio-Ethical Perspectives. C32$*3(Y>(q'&11"2!(J"->O(q&'%'8,%K8"(C2%,,(l;>(@2%'$"-(%'($*"(l"$*"2,3'-!>([Ue 24 (q'&11"2!/("$(3,>(J[WW\O(L]W 25 (S&$%5%/(E*32,"!(3'-(Y32!*3,,/(@3$2%#%3(G>(JLM[MO>X3%,&2%'4($*"(12&#"!!(&) (%')&25"-(#&'!"'$(%'( genetic and genomic research. Genome Medicine, 2:20

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of their groups as their own, through the education and cultivation of traditions.L\,L] This is consequential to the framing of consent so that participants are well informed and privy to the potential risks not just toward them but to their community. 3. Public discourse in general about the project will help the communication of the intentions and the dissemination of information about the project. Discussion of the community and the potential donors will facilitate the informed consent process.LU 4. Community dialogue and open discussion can allow the researchers to learn about the views held by the community toward the project.LW Communication with community-consultation teams and community advisory boards can inform researchers and ethicists about the local cultural values and can further facilitate the dissemination of information to the community.30 5. Through this learning process knowledge about the local social and cultural ideas surrounding participation and its risks can be addressed. This is important because of the possibility for discrimination against participants in their own community. Together, these arguments defend the importance of “Respect for Community” as a key principle in population genetics and biobanking.

Limitations B"!1%$"($*"(."'"+$!(&) (#&557'%$<("'434"5"'$/(&'($*"(&$*"2( hand there are limitations to the validity and the applicability of “community consultation” that merit attention. By extension, these limitations 2"i"#$(!&5"(&) ($*"(123#$%#3,(%!!7"!(&) (3(12%'#%1,"-(3112&3#*($&("$*%#!(%'( population based genomic research. The following points highlight some of the risks this new emphasis on community has to other principles and challenges it faces: 1. The framing of community consultation as a means to facilitate the participation of donors is misguided. Public discourse should not be advertized as a way of recruiting participants to the research project itself. Following this notion some have argued that all the commu26 (p7"'4!$/(d2%#(X>(JLMMeOn([Ue 27 (C"2,%'/(:!3%3*>(J[WWMO(The Crooked Timber of Humanity: Chapters in the History of Ideas/(9"'2<(932-<(J"->O/(`&'-&'n(p&*'(Y7223<R(l"0( k&28n(q'&1)>(W 28 (X*"(:'$"2'3$%&'3,(931Y31(E&'!&2$%75/(JLMMNOn(N]e 29 (q'&11"2!/(C>9>(3'-(E*3-0%#8(S7$*>(JLMM\O(9753'(4"'"$%#(2"!"32#*n("5"24%'4($2"'-!(%'("$*%#!>(l3$72"R(;&,>\ 30 (p7"'4!$/(d2%#(X>(JLMMeOn([WM

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nity engagement process can do at the population level is to provide researchers with cultural insights and local publicity that are useful for recruiting individuals from these groups.31 Such a view undermines the Principle of Autonomy, insofar as the community engagement process can become a method of convincing participants to study. 2. Another limitation is the issue of Representation: there is an inherent constraint on the ability of community advisory boards and discussion groups to fully represent the values of diverse community members. Generalizations about the values held by a diverse community have the #313#%$<($&(4"'"23$"(5%!#&'#"1$%&'!(3'-(i30!(%'(!$7-<(1,3''%'4>(F&2( instance, it has been argued that private interests of religious leaders, 1&,%$%#%3'!/(&2(3#$%=%!$!($*3$(53<(."()7,+,,%'4($*"(2&,"(&) (3(#&557'%$<( leader could possibly mitigate the ethical aims of the researchers.32 3. G,!&/(."#37!"(&) ($*"(,3#8(&) (3(#&'#%!"(-"+'%$%&'(&) (u#&557'%$<b(&2( ‘population’ in both bioethics and biomedicine, the limits at which $*"("$*%#3,(5&-",(&1"23$"!(#3'(."(32.%$232<>(V"'"$%#%!$!(#3'(-"+'"( their study population through a number of different, and sometimes opposing criteria: race, language, geography, ethnicity, culture, ances$2</("$#>(E&'!"a7"'$%3,,</($*"2"(%!(3(12&.,"53$%#(+$(."$0""'(!&#%3,(3'-( biological aspects of populations.33 4. Finally, by shifting the focus of ethical concern from the individual to the community, we can lose sight of the necessary protection of indi=%-73,!(3'-($*"%2(2%4*$!>(X*"(12%'#%1,"!(&) (S"!1"#$()&2($*"(:'-%=%-73,( and Autonomy that have guided informed consent in the past still have a place in contemporary bioethics.

X*7!()32(:(*3="(&7$,%'"-(!&5"(&) ($*"(%!!7"!($*3$(32"(-%!#7!!"-(%'( the works cited and continue to shape our understanding of Respect for Community as a commonly held value in contemporary bioethics. V. Reevaluating Informed Consent :'(3--%$%&'($&($*"(%!!7"!(-%!#"2'"-(!&()32(:(*3="(,")$(&'"(&) ($*"( most controversial complications of informed consent for DNA sampling and biobanks in general: the unpredictability of the way the information about a given population or community will be used. To wit, how can unforeseeable risk be addressed and communicated to participants. Because it is often impossible to anticipate what novel technologies or 31 32 33

(:.%->([UL (Y32!*3,,(@/(3'-(S&$%5%(E>(JLMM[O(Ethical Challenges in Community-Based Research>(eeLnLZW6L\e (A3'832/(@35",3(3'-(Y%,-2"'(E*&/(JLMMLO(Toward a New Vocabulary of Human Genetic Variation>(A#%"'#"/(;&,>LWUn[ee6[eN

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5"$*&-!(5%4*$("5"24"/(132$%#%13'$!(32"(,")$($&(#&'!"'$(u%'-"+'%$",<b()&2( future studies. The questionable validity of this type of consent is part of the reason why international guidelines on biobanks lack consensus and part of our challenge as bioethicists is to develop new models of risk assessment.34 B%))"2"'$("))&2$!($&(35"'-($*%!(%!!7"(*3="(5&-%+"-($*"(#&''"#tion of the participant to his or her sample in a variety of ways. Because $*%!(%!!7"(%!(42"3$"2($*3'($*"(!#&1"(&) ($*%!(12&K"#$/(:(0%,,(#&55"'$(&'( only one such model: unlinked anonymized sampling. With no individual connection to the samples whatsoever, participants are presumably protected from risks of discrimination or the connection of their sample with any future research project with questionable aims. However, this “protection” has come with a great cost; the virtual impossibility of a participant whose sample has been irreversibly anonymized to remove $*"(1&!!%.%,%$<(3'-($&(-"'<($*"(2%4*$($&(0%$*-230(#&'!"'$>(:'($*"(#3!"(&) ( the HapMap Project, the entire community or a representation group must agree to remove all physical samples from the biobank; once again echoing the principle of Respect for Communities. As stated previously, this would still do very little because the actual genotypic data has been digitalized and spread through public-online access. Additionally, ethno4231*%#(2"!"32#*(%'(.%&5"-%#%'"(*3!(!*&0'($*3$("23!%'4(%-"'$%+"2!()2&5( samples and distancing participants from their sample allows genetic data to become a valuable commodity in the research enterprise.35 This imperative to openly transfer data like a commodity involves a complex interplay between other principles of population genetics that have not been here discussed, but at least deserve mention: universality and reciprocity. Together these have been used to justify the public and free distribution the genetic information of thousands of individuals and their communities.e\ The resolution of issues like this one depends on the growing involvement of the public in deliberation about the proper conduct of research and the involvement of the research teams with the diverse cultures in which their research is framed. While current informed consent forms and templates demonstrate a commitment to ensuring that 2"!"32#*(132$%#%13'$!(32"(0",,(%')&25"-(&) ($*"(2%!8!(3'-(."'"+$!(&) (132ticipating in genomic studies, there continues to be a need to develop 34 (C"2'%#"(A>d,4"2(T(G2$*72(`>E31,3'(JLMM\O(Consent and anonymization in research involving biobanks.(dYC_/(;&,>]R(l&>]n\\L 35 (Y&'$&<3/(Y%#*3",(JLM[[O(Y38%'4($*"(Y"H%#3'(B%3."$%#n(S3#"/(A#%"'#"(3'-($*"(V"'"$%#!(&) (:'"a73,%$<>(D'%="2!%$<(&) (E3,%)&2'%3( Press 36 (q'&11"2!/(C>9>(3'-(E*3-0%#8(S7$*>(JLMM\On(]]

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novel approaches for adequately informing participants of the chang%'4(#&51,"H%$%"!(&) ($*"(!#%"'$%+#(3'-("$*%#3,(%!!7"!($*3$(-&5%'3$"($*"( debates about the conduct of population-wide genomics research. The %51&2$3'#"(&) (=32%&7!(!#%"'$%+#/(#7,$723,(3'-(!&#%3,()3#$&2!($&(0*3$(03!( called the “tailoring” of informed consente] is implicit in this paper and the focus on communities represents one of the greatest adjustments to informed consent. :'(#&'#,7!%&'/($*"!"(#&'!%-"23$%&'!(3'-($*"(2"!"32#*(&) (53'<( .%&"$*%#%!$!(%'(+",-(#&'$%'7"($&(!*31"(%')&25"-(#&'!"'$(%'($"25!(&) ($*"( "=&,=%'4($"#*'&,&4%"!(&) (4"'&5%#!>(:'(132$/($*"(#&'$%'7&7!(3-31$3$%&'( of informed consent is the result of a growing appreciation for robustness in ethical principles and attention to public debates surrounding these sensitive issues. These debates about ethics and human genetics are a global phenomenon and take place in the context of a plurality of world-views.eU The ongoing respect for the plurality of human moral values and the multifaceted interplay of group identity has geared .%&"$*%#!($&(3112&12%3$"(3(-<'35%#(3'-(*%4*,<(-%3,"#$%#(#*323#$"2>(:'( order for a philosophically pluralist framework to adequately impact !#%"'$%+#(3%5!/(.&$*(!#%"'$%+#('&'6!#%"'$%+#(#&557'%$%"!(57!$(-"=",&1( sympathetic and respectable relationships. We have seen the development of these ethical practices though the historical improvement on 13!$(%'$"2'3$%&'3,(#&,,3.&23$%="("))&2$!(J9V@/(9VB@/(9DV_/(931Y31/( "$#>O(3'-($*"(2"!1&'!"(&) ($*"(#&557'%$<($&(.%&5"-%#3,(2"!"32#*>(:(*3="( here highlighted the trend in the international research ethics to incorporate the principle of Respect for Communities through community engagement and group consent. These observations, and bioethics in general can be substantially improved through sociological research in $0&(+",-!n(+2!$/(2"!"32#*(&) ($*"(%'$"23#$%&'!(."$0""'(3#$&2!(2"!1&'!%.,"( for producing bioethical documents and models; second, by providing detailed accounts of religious systems, cultural contexts and modes of moral reasoning are present in participating communities.eW Moreover, ethical and philosophical research can help guide theoretical bioethics through the complexity of the sociopolitical consequences of population genetics.40(:'(,324"(132$/($*%!(2"!"32#*(*%4*,%4*$!($*"($"'-"'#<(&) ( ethical norms and models to change. Still, previous ethical notions and priorities are not replaced and are subject to reinterpretation for prag37 (S&$%5%/(E*32,"!(3'-(Y32!*3,,/(@3$2%#%3(G>(JLM[MO>(LM 38 (q'&11"2!/(C>9>(3'-(E*3-0%#8(S7$*>(JLMM\On(]Z 39 (B723'$"/(JLMMWO(Bioethics in a pluralistic society- bioethical methodology in lieu of moral diversity. Med Health Care and Philos JLMMWO([LneZzN] 40 (:.%->(]U

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53$%#(7!">(:'(4"'"23,/($*"(&'4&%'4(u12&#"!!b(&) (%')&25"-(#&'!"'$/(#7,$723,( tailoring and the active involvement of bioethics at the international level have helped communicate the importance of a pluralist view of ethics.

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Comfort in the Face of Death: A Comparative Analysis of Aid-in-Dying Policies in the United States, the Netherlands, and Switzerland Taylor Purvis ’12 Yale University Introduction

he debate surrounding aid-in-dying encompasses moral and religious concerns, understandings of the meanings of life and death, and public policy implications. Moreover, policies concerning issues of life and death implicate citizens’ understanding of self-identity, society, and common values. The purpose of this paper is to compare aid-in-dying policies between the United States and two foreign jurisdic$%&'!v$*"(l"$*"2,3'-!(3'-(A0%$f"2,3'-v3'-($&(3-=&#3$"()&2(2")&25( %'(D>A>(1&,%#<($&(,"43,%f"(1*<!%#%3'63!!%!$"-(!7%#%-">((:(+2!$(#&'!%-"2(D>A>( policy on aid-in-dying, and discuss the three U.S. states that have legal%f"-(1*<!%#%3'63!!%!$"-(!7%#%-">((@32$(::(0%,,($*"'("H35%'"(3%-6%'6-<%'4( %'($*"(l"$*"2,3'-!(3'-(A0%$f"2,3'->((F%'3,,</(:(3247"()&2(3(#*3'4"(%'( U.S. policy to legalize physician-assisted suicide, and will recommend $*3$(!$3$"!(%51,"5"'$(3(1&,%#<(!%5%,32($&($*3$(%'(_2"4&'/(.7$(0%$*($0&( 3--%$%&'3,(!3)"4732-!(%'(1,3#">((`%8"(%'(_2"4&'/(&',<(1*<!%#%3'63!!%!$"-( suicide should be legalized, and mentally ill patients should not be al,&0"-(3##"!!($&(1*<!%#%3'63!!%!$"-(!7%#%-">((:'(3--%$%&'/($0&(!3)"4732-!( '&$(%'#,7-"-(%'(_2"4&'b!(1*<!%#%3'63!!%!$"-(!7%#%-"(1&,%#<(!*&7,-(."( implemented by the states: mandatory psychiatric screenings and preauthorization committees to establish a patient’s eligibility to use physician-assisted suicide. I. United States’ Policy on Aid-In-Dying The United States does not recognize a constitutional right to aid-in-dying, but three states have legalized physician-assisted suicide: _2"4&'/(?3!*%'4$&'/(3'-(Y&'$3'3>((d7$*3'3!%3/(&'($*"(&$*"2(*3'-/(&2( the practice of physicians directly administering lethal medications to patients, is illegal in all U.S. states. Two Supreme Court cases, Wash140

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%'4$&'(=>(V,7#8!."24/(ZL[(D>A>(]ML(J[WW]O/(3'-(;3##&(;>(I7%,,/(ZL[(D>A>( ]We(J[WW]O/(*3="("!$3.,%!*"-($*3$(1*<!%#%3'63!!%!$"-(!7%#%-"v3(123#$%#"( in which medical doctors prescribe lethal medications to a patient and $*"(13$%"'$(3-5%'%!$"2!($*"(5"-%#3$%&'(*%5(&2(*"2!",)v%!('&$(3(#&'!$%$7$%&'3,,<(47323'$""-(2%4*$>((:'(?3!*%'4$&'(=>(V,7#8!."24/()&72(5"-%#3,( doctors practicing in Washington State argued that the Washington State ban on physician-assisted suicide violated the Due Process Clause of the Fourteenth Amendment of the U.S. Constitution. Based on a long U.S. state tradition of banning suicide, the Court found that the Due Process Clause did not include a fundamental right to assistance in suicide, and the Court upheld the ban on physician-assisted suicide in Washington State.1((:'(LMMU/(*&0"="2/(?3!*%'4$&'(A$3$"(,"43,%f"-(1*<!%#%3'63!!%!$"-( suicide through a ballot initiative.2((:'(;3##&(=>(I7%,,/($*2""(l"0(k&28( physicians argued that the New York state ban on physician-assisted suicide violated the Equal Protection Clause of the Fourteenth Amendment. The physicians argued that the ban discriminated against terminally ill patients who were not on life-sustaining treatment, since they were unable to “hasten death” through physician-assisted suicide, while terminally ill patients on life-sustaining treatment could “hasten death” by ending treatment.3 The Court held that the distinction between physician-assisted suicide and withdrawing treatment differed both in #37!3$%&'(3'-(%'$"'$/(3'-($*3$(Po.y<(1"25%$$%'4("="2<&'"($&(2")7!"(7'wanted medical treatment while prohibiting anyone from assisting a suicide, New York law follows a longstanding and rational distinction.”4 A%'#"(?3!*%'4$&'(=>(V,7#8!."24(3'-(;3##&(=>(I7%,,("!$3.,%!*"-($*3$($*"2"( was no constitutional right for physician-assisted suicide,5 U.S. states have the power to decide whether to ban or permit physician-assisted suicide. ( D!%'4($*%!(1&0"2/(_2"4&'/(?3!*%'4$&'/(3'-(Y&'$3'3(*3="(3,,(,"43,%f"-(1*<!%#%3'63!!%!$"-(!7%#%-">((:'([WWN/(_2"4&'(03!($*"(+2!$(!$3$"($&( 13!!(3(5"3!72"v$*"(_2"4&'(B"3$*(0%$*(B%4'%$<(G#$v$*3$(0&7,-(3,,&0( physicians to prescribe lethal medications to terminally ill patients.\ Under the provisions of the Act, physician-assisted suicide is only offered 1 Washington v. Glucksberg/(ZL[(D>A>(]ML(J[WW]O(3$(][M/(]LU> 2 (S&."2$(A$"%'.2&&8/(P@*<!%#%3'6G!!%!$"-(B"3$*vF2&5(_2"4&'($&(?3!*%'4$&'(A$3$"/Q(The New England Journal of Medicine JeZWnLZ[e6LZ[Z/(B"#"5."2([[/(LMMUO/(3##"!!"-(B"#"5."2(L/(LM[M/(*$$1ngg000>'"K5>&24g-&%g)7,,g[M>[MZ\gldpY1MUMWeWN. 3 Vacco v. Quill/(ZL[(D>A>(]We(J[WW]O(3$(UMMR(A$"1*"'(S>(`3$*35/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"(@32$(:Q(J,"#$72"/(`7#"(93,,( G7-%$&2%75/(k3,"(D'%="2!%$</(_#$&."2(]/(LM[MO> 4 Vacco v. Quill/(ZL[(D>A>(]We(J[WW]O(3$(UMUR(`3$*35/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"(@32$(:Q> 5 (q2%!$"'(D'-"2*%,,/(P_243'($23'!1,3'$3$%&'(3'-(d'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"Q(J!"#$%&'/(k3,"(D'%="2!%$</(_#$&."2(\/(LM[MOR( `3$*35/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"(@32$(:Q> 6 Daniel Hillyard and John Dombrink, Dying Right: The Death With Dignity Movement(Jl"0(k&28n(S&7$,"-4"/(LMM[O/(]N>

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$&(5"'$3,,<(#&51"$"'$(3-7,$(_2"4&'(2"!%-"'$!(0*&(*3="(.""'(-%34'&!"-( as terminally ill by two physicians.] The patient must make two oral and written requests for physician-assisted suicide in the presence of at least $0&(0%$'"!!"!(3'-(!13#"-(3$(,"3!$(+)$""'(-3<!(3132$>((C&$*($*"(3$$"'-%'4(3'-(#&'!7,$%'4(1*<!%#%3'(57!$(#&'+25($*3$($*"(13$%"'$(%!(#313.,"( of requesting physician-assisted suicide, and if either doctor has doubts about a patient’s psychiatric condition he or she must refer the patient to counseling.U((X*"2"(*3="(.""'('&(2"1&2$"-(3.7!"!(&) ($*"(,30(%'(_2"4&'/( 3'-(3!(&) (LMMN($*"(_2"4&'(C&32-(&) (Y"-%#3,(dH35%'"2!(*3-(&',<(%'="!tigated four cases of physician-assisted suicide which involved irregularities with “procedural aspects, such as a missing witness signature,”W but none of which indicated serious abuses of the law.10 ?3!*%'4$&'(A$3$"(2"#"'$,<()&,,&0"-(%'(_2"4&'b!()&&$!$"1!(3'-( ,"43,%f"-(1*<!%#%3'63!!%!$"-(!7%#%-"($*2&74*(3(#%$%f"'!b(%'%$%3$%=">((_'( l&="5."2(N/(LMMU/(?3!*%'4$&'(13!!"-(:'%$%3$%="([MMM/(0*%#*(,"43,%f"-( 1*<!%#%3'63!!%!$"-(!7%#%-"(0%$*(ZU(1"2#"'$(&) ($*"(=&$">11 The Washington B"3$*(0%$*(B%4'%$<(G#$(*3!(="2<(!%5%,32(12&=%!%&'!($&($*"(_2"4&'(B"3$*( with Dignity Act: patients seeking to use physician-assisted suicide must ."(5"'$3,,<(#&51"$"'$(3-7,$!(-%34'&!"-(3!($"25%'3,,<(%,,(J!%H(5&'$*!(&2( less to live), and patients must be Washington residents.12 Patients must sign a written request for medication and have two witnesses present at the time of signing. The patient must also make two oral requests for the lethal medication at least 15 days apart. Finally, patients must also be !""'(.<(3(#&'!7,$%'4(1*<!%#%3'>((:) ("%$*"2($*"(3$$"'-%'4(&2(#&'!7,$%'4(1*<sician believes the patient is suffering from a psychiatric or psychological disorder, he or she must refer the patient for counseling.13 Finally, Montana legalized physician-assisted suicide, this time through a Montana Supreme Court decision rather than a ballot initiative. :'(3(LMMW(Y&'$3'3(A712"5"(E&72$(#3!"/(C3H$"2(=>(Y&'$3'3/($*"(E&72$( 7 “Legislative Statute,” Death with Dignity Act J_2"4&'(B"132$5"'$(&) (9753'(A"2=%#"!O/(,3!$(5&-%+"-(A"1$"5."2(LL/(LMM]/(3##"!!"-( December 2, 2010, http://www.oregon.gov/DHS/ph/pas/ors.shtml. 8 (:.%-> 9 (PE*31$"2(Zn(_="2!"3!(dH1"2%"'#"/Q(First Report JA","#$(E&55%$$""(&'(G!!%!$"-(B<%'4()&2($*"(X"25%'3,,<(:,,(C%,,/(LMMZO/([ZL/(3#cessed December 2, 2010, *$$1ngg000>17.,%#3$%&'!>132,%35"'$>78g13g,-LMMNMZg,-!","#$g,-3!-<gU\gU\MU>*$5R((A7!3'(_8%"/(P@*<!%#%3'6G!!%!$"-( A7%#%-"(v(_2"4&'(3'-(C"<&'-/Q(The New England Journal of Medicine JeZLR[\/(G12%,([Z/(LMMZO/(3##"!!"-(B"#"5."2(L/(LM[M/(http://www.nejm.org/ -&%g1-)g[M>[MZ\gldpY1MZUMMN; Steinbrook, “Physician-Assisted Death.” 10 (D'-"2*%,,/(P_243'($23'!1,3'$3$%&'>Q 11 Steinbrook, “Physician-Assisted Death”; “Legal Status of Assisted Suicide/Euthanasia in the United States,” Nightingale Alliance, accessed December 2, 2010, http://www.nightingalealliance.org/pdf/state_grid.pdf. 12 “Washington State Death with Dignity Act,” Center for Health Statistics J?3!*%'4$&'(A$3$"(B"132$5"'$(&) (9"3,$*O/(,3!$(5&-%+"-( March 4, 2010, accessed December 2, 2010, http://www.doh.wa.gov/dwda/. 13 (PX*"(?3!*%'4$&'(B"3$*(0%$*(B%4'%$<(G#$n(:'%$%3$%="(Y"3!72"([MMM/Q(Center for Health Statistics J?3!*%'4$&'(A$3$"(B"132$5"'$(&) ( Health), accessed December 2, 2010, *$$1ngg0"%>!"#!$3$">03>4&=g&!&!g"'gB&#75"'$!g:[MMM6X"H$^LM)&2^LM0".>1-).

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decided that physician-assisted suicide did not violate public policy and *",-($*3$($*"(!$3$"b!(X"25%'3,,<(:,,(G#$/(0*%#*(3,,&0!(3-7,$!($&(0%$**&,-( or withdraw life-sustaining treatment, “confers on terminally ill patients a right to have their end-of-life wishes followed, even if it requires direct participation by a physician through withdrawing or withholding treatment.”14 The Court also ruled that doctors who help patients com5%$(!7%#%-"(#3''&$(."(12&!"#7$"-(J3!!75%'4($*"(13$%"'$(03!(#&51"$"'$( and making a voluntary request).15 However, since the Court did not appeal to a constitutional right to physician-assisted suicide, organizations in Montana that oppose physician-assisted suicide, such as the Montana Family Foundation, are now seeking a legislative ban against physicianassisted suicide.[\ II. Aid-In-Dying Policies in Europe: the Netherlands and Switzerland The Netherlands and Switzerland are member states of the E&7'#%,(&) (d72&1"(3'-(*3="(.&$*(23$%+"-($*"(d72&1"3'(E&'="'$%&'( &'(9753'(S%4*$!(JdE9SO>[]((:'(@2"$$<(=>(D'%$"-(q%'4-&5/(-"#%-"-(%'( 2002, the European Court of Human Rights established that the ECHR does not guarantee a right to death by assisted suicide or euthanasia.[U A1"#%+#3,,</($*"(E&72$(*",-($*3$(G2$%#,"(L(&) ($*"(dE9S/(0*%#*(12&=%-"!( $*3$(Po"y="2<&'"b!(2%4*$($&(,%)"(!*3,,(."(12&$"#$"-(.<(,30/Q[W cannot be read to guarantee a right to die.20 The Court also found that Article 3 of the dE9S/(0*%#*(!$3$"!($*3$(Po'y&(&'"(!*3,,(."(!7.K"#$"-($&($&2$72"(&2($&(%'human or degrading treatment or punishment,”21 only conferred a negative obligation onto the state to refrain from imposing degrading types of treatment onto citizens.22 The Court did not decide that countries needed to ban assisted suicide or euthanasia under the ECHR; instead, 14 Baxter v. Montana/(LMMW(YX(NNW(JBG(MW6MMZ[O(3$(eM/(eU> 15 “Legal Status of Assisted Suicide”. 16 (G,%H(A1%"4",/(PY&'$3'3(_8!(@*<!%#%3'6G!!%!$"-(A7%#%-"/Q(National Public Radio(Jp3'732<([/(LM[MO/(http://www.npr.org/templates/ !$&2<g!$&2<>1*1c!$&2<:-|[LL[ZN[eM. 17 “Member States of the Council of Europe,” Convention for the Protection of Human Rights and Fundamental Freedoms(JE&7'#%,(&) (d72&1"O/(,3!$(5&-%+"-(Y32#*([L/(LM[M/(3##"!!"-(B"#"5."2(L/(LM[M/(http://conventions.coe.int/treaty/Commun/ChercheSig. 3!1clX|MMZTEY|TBF|TE`|dlV. 18 (9"253'(l<!/(P@*<!%#%3'(:'=&,="5"'$(%'(3(@3$%"'$b!(B"3$*n(G(E&'$%'"'$3,(d72&1"3'(@"2!1"#$%="/Q(Readings in Comparative Health Law and Bioethics/(L'-("->(X%5&$*<(A$&,$f)7!(p&!$(JB72*35n(E32&,%'3(G#3-"5%#(@2"!!/(LMM]O/(e[W>((See also M.A. Sanderson, “Pretty v. United Kingdom. G11>(l&>(LeN\gML/Q(The American Journal of International Law J;&,>(W\/(l&>(N/(_#$>/(LMMLO/(WNN/(*$$1ngg000>K!$&2>&24g!$3.,"geM]M\WMc!"a|L. 19 “The European Convention on Human Rights,” Council of Europe Jl&="5."2(N/([WZMO/(available at http://www.hri.org/docs/ ECHR50.html. 20 (l<!/(P@*<!%#%3'(:'=&,="5"'$(%'(3(@3$%"'$b!(B"3$*/Q(e[WR(q2%!$"'(D'-"2*%,,/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"Q(J!"#$%&'/(k3,"( D'%="2!%$</(_#$&."2([e/(LM[MOR(A$"1*"'(S>(`3$*35/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"(@32$(::Q(J,"#$72"/(`7#"(93,,(G7-%$&2%75/(k3,"(D'%="2!%$</(_#$&."2([L/(LM[MO> 21 “The European Convention on Human Rights.” 22 (l<!/(P@*<!%#%3'(:'=&,="5"'$(%'(3(@3$%"'$b!(B"3$*/Q(e[WR(A3'-"2!&'/(PPretty v. United Kingdom/Q(WNN>

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it held that states are not required to legalize them.23 No case related to physician-assisted suicide has been brought to the European Court of 9753'(S%4*$!(7'-"2(G2$%#,"(U(&) ($*"(dE9S/(0*%#*(12&5%!"!(3(2%4*$( $&(P2"!1"#$()&2(o3(1"2!&'b!y(12%=3$"(3'-()35%,<(,%)">Q24((:$(%!(7'#,"32(3$($*%!( point how the Court would respond to a claim for the right to assisted suicide under the right to privacy.25 A. Aid-in-Dying in the Netherlands The Netherlands’ experience with physician-assisted suicide and "7$*3'3!%3(."43'(%'([WUM($*2&74*(12&!"#7$&2%3,(-%!#2"$%&'>((C"4%''%'4(%'( [W]e/(0*%,"(1*<!%#%3'63!!%!$"-(!7%#%-"(3'-("7$*3'3!%3(0"2"(!$%,,()&253,,<( illegal, courts in the Netherlands decided several cases in which defendants raised a defense of necessity to avoid a murder charge.L\ To create 3(5&2"(#&'!%!$"'$(1&,%#<()&2(3%-6%'6-<%'4(#3!"!/(%'([WUM($*"(E&55%$$""( of Attorneys-General announced that there were certain types of assisted suicide and euthanasia that it would not prosecute.L]((X*"'/(%'([WUN/( the Royal Dutch Medical Association outlined a set of “rules of careful conduct” which discussed appropriate times that assisted suicide and euthanasia could be used. These guidelines included calls for the doctor to “inform the patient of his condition, consult his nearest relatives J7',"!!(*"(&.K"#$!O/(#&'!7,$(3$(,"3!$(&'"(&$*"2(1*<!%#%3'/(8""1(02%$$"'( records, and, in the case of a child, obtain the consent of the parents or legal guardians.”LU((C<([WWM/($*"(B7$#*(Y%'%!$2<(&) (p7!$%#"(3'-($*"(S&<3,( Dutch Medical Association had agreed to guarantee doctors protection )2&5(12&!"#7$%&'(7'-"2(G2$%#,"!(LWe(3'-(LWN(3!(,&'4(3!($*"<(3.%-"-(.<( the delineated “rules of careful conduct.”LW((:'(LMM[/($*"(l"$*"2,3'-!b( Parliament passed the Termination of Life on Request and Assisted Sui#%-"(JS"=%"0(@2&#"-72"!O(G#$(0*%#*(35"'-"-(G2$%#,"!(LWe(3'-(LWN(&) ( the Dutch Criminal Code such that a doctor engaged in physician-assist"-(!7%#%-"(3'-("7$*3'3!%3(#&7,-('&$(."(12&!"#7$"-(%) (*"(&2(!*"()7,+,,"-(3( number of procedural requirements.30 23 Underhill, “End of Life Care.” 24 “The European Convention on Human Rights.” 25 Underhill, “End of Life Care.” 26 (p&*'(V2%)+$*!/(P@*<!%#%3'6G!!%!$"-(A7%#%-"(%'($*"(l"$*"2,3'-!(3'-(C",4%75/Q(International Library of Ethics, Law, and the New Medicine(J;&,75"(eU/(@32$(::/(]]6U\/(LMMUO/(*$$1ngg000>!12%'4"2,%'8>#&5g#&'$"'$g$L[L[\[W\M[][e]]g)7,,$"H$>1-). 27 Rietjens, Judith A. C., et al, “Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt 3'-(?*3$(I7"!$%&'!(S"53%'cQ/(Journal of Bioethical Inquiry J;&,75"(\/(@32$(:::/(L][6LUeO/(http://www.ncbi.nlm.nih.gov/pmc/articles/ @YEL]ee[]Wgc$&&,|15#"'$2"fR(`3$*35/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"(@32$(::>Q 28 (l<!/(P@*<!%#%3'(:'=&,="5"'$(%'(3(@3$%"'$b!(B"3$*/Q(eLeR(Pd7$*3'3!%3(%'($*"(l"$*"2,3'-!n(G(C2%") (9%!$&2</Q(Pregnant Pause, last 5&-%+"-(A"1$"5."2(W/(LM[M/(3##"!!"-(B"#"5."2(L/(LM[M/(http://www.pregnantpause.org/euth/nethhist.htm. 29 “Euthanasia in the Netherlands.” 30 (l<!/(P@*<!%#%3'(:'=&,="5"'$(%'(3(@3$%"'$b!(B"3$*/Q(eLe6eLNR(D'-"2*%,,/(Pd'-(&) (`%)"(E32">Q

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Unlike the U.S. states which have only legalized physician-assisted suicide and recognize a sharp distinction between physician-assisted suicide and euthanasia, the Netherlands has not distinguished between $*"($0&/(3'-(-&#$&2!(0*&()7,+,,('"#"!!32<(#2%$"2%3(#3'(132$%#%13$"(%'( both.31((:'(3--%$%&'/(B7$#*(,30(3,,&0!(.&$*(1*<!%#%3'63!!%!$"-(!7%#%-"(3'-( euthanasia for adolescents, unlike U.S. state laws which restrict physician3!!%!$"-(!7%#%-"($&(3-7,$!>((:'($*"(l"$*"2,3'-!/(#*%,-2"'(34"!([L6[Z(57!$( *3="(3(132"'$b!(1"25%!!%&'(3'-(#*%,-2"'(34"!([\6[U(57!$(*3="(132"'$3,(%'volvement in the decision.32 Also unlike the U.S. states, the Netherlands does not restrict euthanasia or physician-assisted suicide to terminally ill 13$%"'$!v3(13$%"'$(57!$(!%51,<(*3="(P7'."323.,"(3'-(*&1","!!Q(!7)fering.33((A7#*(!7))"2%'4(-&"!('&$(*3="($&(."(1*<!%#3,v$*"([WWN(E*3.&$( case made clear that suffering can simply entail mental distress.34 Dutch law does, however, limit assisted suicide to physicians.35 B. Aid-in-Dying in Switzerland Assisted suicide in Switzerland differs from the U.S. states and the Netherlands in that its legal status hinges on the motives of the 1"2!&'(0*&(%!(3!!%!$%'4(%'($*"(!7%#%-">((:'()3#$/(0*%,"("7$*3'3!%3(%!(12&hibited under Article 114 of the Swiss Penal Code, every type of assisted suicide, not just for the terminally ill or “suffering,” is legal provided that the person assisting is acting with good intent.e\ Article 115 of the Swiss Penal Code criminalizes assistance in a suicide only if the assistant’s 5&$%="!(32"(!",+!*n(PG'<&'"(0%$*(3(!",+!*(5&$%="(0*&(%'#%$"!(3(1"2!&'( $&(#&55%$(!7%#%-"(&2(0*&(*",1!($*3$(1"2!&'j$&(#&55%$(!7%#%-"/(%) ($*"( suicide is consummated or attempted, will be punished by a maximum of 5 years reclusion or imprisonment.”e]((:) (3(1"2!&'(3!!%!$!(%'(3(!7%#%-"()&2( #&513!!%&'3$"(2"3!&'!/(*%!(&2(*"2(3#$(-&"!('&$(+$($*"(!$3$7$&2<(-"+'%$%&'( of illegal assisted suicide.eU The Federal Ministry of Justice explained $*3$(!",+!*(5&$%="!(32"(&'"!(0*%#*(P!3$%!)<(o3(1"2!&'b!y(&0'(53$"2%3,(&2( "5&$%&'3,('""-!j$*"(1&!!%.%,%$<(&) (",%5%'3$%'4(!&5"(53K&2(12&.,"5()&2( $*"()35%,</j43%'%'4(3'(%'*"2%$3'#"/(2",%"=%'4(*%5!",) (&) ($*"(.72-"'(&) ( 31 32 33 34 35 36 37 pdf. 38

(PE*31$"2(Zn(_="2!"3!(dH1"2%"'#"/Q([\WR(l<!/(P@*<!%#%3'(:'=&,="5"'$(%'(3(@3$%"'$b!(B"3$*/Q(eLL>( (l<!/(P@*<!%#%3'(:'=&,="5"'$(%'(3(@3$%"'$b!(B"3$*/Q(eLNR(D'-"2*%,,/(Pd'-(&) (`%)"(E32">Q (l<!/(P@*<!%#%3'(:'=&,="5"'$(%'(3(@3$%"'$b!(B"3$*/Q(eLeR(PE*31$"2(Zn(_="2!"3!(dH1"2%"'#"/Q([]MR(D'-"2*%,,/(Pd'-(&) (`%)"(E32">Q( (l<!/(P@*<!%#%3'(:'=&,="5"'$(%'(3(@3$%"'$b!(B"3$*/Q(eLe> (`3$*35/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"(@32$(::>Q( Sobel, “Assisted Death.” Jerome Sobel, “Assisted Death,” EXIT A.D.M.D. Suisse Romande, accessed December 4, 2010, http://www.exit-geneve.ch/ExitAD. (`3$*35/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"(@32$(:::>Q

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!711&2$%'4($*"(%'-%=%-73,j&2(",%5%'3$%'4(3(1"2!&'(*"(*3$"->QeW Doctors’ prescriptions are required to obtain lethal medications, but “this requirement exists in order to ensure control of dangerous drugs and not because of a view that assistance with suicide is a function of medicine.”40 Assisted suicide in Switzerland, then, is not limited to physicians, as it is in U.S. states and the Netherlands. Anyone can aid in a suicide 3!(,&'4(3!($*"<(32"(3#$%'4(0%$*(#&513!!%&'3$"/('&'6!",+!*(5&$%="!>((:'( addition, Switzerland has a de-centralized system for providing assisted !7%#%-"(%'(0*%#*('&'612&+$(!7%#%-"(&243'%f3$%&'!(32"(%'(#*324"(&) (*",1ing citizens commit suicide.41((X*"!"('&'612&+$!()3#%,%$3$"(5""$%'4!(0%$*( a physician who prescribes the lethal medication, and then a representa$%="()2&5($*"('&'612&+$(&243'%f3$%&'(0%,,(3!!%!$(0%$*($*"(3#$73,(!7%#%-"( attempt. Since assisted suicides are unregulated and delegated to non12&+$(&243'%f3$%&'!/(#&'#"2'!(*3="(.""'(23%!"-(3.&7$(3(1&$"'$%3,(,3#8( of federal oversight over assisted suicides in Switzerland. Switzerland’s legislation is the least restrictive of the three approaches to assisted suicide described thus far. III. Recommendation to Change the United States’ Policy on Aid-InDying A. Allowing Only Physician-Assisted Suicide Since two Supreme Court cases refused to recognize a constitutional right to physician-assisted suicide, and mobilizing enough political will to legalize physician-assisted suicide at the statutory level could be challenging, it will likely be left up to individual U.S. states to legalize 1*<!%#%3'63!!%!$"-(!7%#%-">((9&0"="2/(,%8"($*"(#722"'$(1&,%#<(%'(_2"4&'/( the United States should legalize only physician-assisted suicide, not euthanasia or assisted suicide by people other than physicians. While euthanasia may prove a more clinically effective tool than physician-assisted suicide for ending a patient’s life, it removes the patient’s voluntary act of administering the lethal medication him or herself, which provides another safeguard to ensure that the patient’s act is truly voluntary. The Netherlands, the only country discussed in this paper that allows euthanasia, has reported almost 1,000 deaths by euthanasia in which a patient did not clearly request euthanasia.42 While banning euthanasia in the 39 40 41 42

(PE*31$"2(Zn(_="2!"3!(dH1"2%"'#"/Q([WZ> (:.%->/([WL> (:.%->/([WUR(`3$*35/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"(@32$(:::>Q (:.%->/([]U>

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United States does not necessarily guarantee that involuntary deaths will not occur, it seems from the Dutch experience that a policy supporting this practice provides for more opportunities for involuntary euthanasia.43 Assisted suicide should also be limited to the province of doctors because physicians can effectively screen for mental illness and assure that patients are not seeking suicide simply as a manifestation of severe depression. Maintaining the role of the medical profession in assisted !7%#%-"(3,!&(!"2="!($&(12&$"#$(=7,'"23.,"(13$%"'$!()2&5($*"(%'i7"'#"(&) ( !",+!*,<(5&$%=3$"-()35%,<(5"5."2!(&2(2",3$%&'!>((d="'($*&74*(,30!(%'( Switzerland promise to prosecute those who assist in a suicide for selfserving reasons, doctors provide an additional layer of security.44 B. Barring Access to Physician-Assisted Suicide for the Mentally Ill U.S. states that legalize physician-assisted suicide must also prohibit access to physician-assisted suicide by patients who are mentally %,,>((X*"([WWN(E*3.&$(#3!"(%'($*"(l"$*"2,3'-!("H"51,%+"!($*"(12&.,"5!( with legalizing physician-assisted suicide for patients with mental illness. Hilly Bosscher was a 50-year old Dutch woman who wanted to die after having lost her two young sons. Bosscher attempted suicide and was referred to the defendant, psychiatrist Dr. Chabot. Dr. Chabot diagnosed Bosscher with “an adjustment disorder consisting of a depressed 5&&-j%'($*"(#&'$"H$(&) (3(#&51,%#3$"-(."2"3="5"'$(12&#"!!>Q45 Despite this diagnosis, Dr. Chabot argued that suicide “was the only option to end Mrs. Bosscher’s misery” and eventually aided Bosscher in her suicide.N\((X*"(l"$*"2,3'-!(A712"5"(E&72$(-%-('&$(+'-(%!!7"(0%$*(B2>( Chabot aiding a mentally ill patient in committing suicide; instead, he was guilty of not consulting an outside physician for a second opinion. The Court decided that aiding a mentally ill patient was not different from aiding a terminally ill patient, given that the grounds for assisting suicide is “unbearable and hopeless” suffering.N] Hopelessness and feeling that life is unbearable, however, are symptoms of depression. Such feelings of hopelessness do not in fact mean that the patient’s depression is hopeless, as Dr. Chabot seemed to feel. For this reason, U.S. states should not legalize physician-assisted suicide for mentally ill patients and must properly screen patients for symptoms of psychiatric illnesses such 43 44 45 46 47

(`3$*35/(Pd'-(&) (`%)"(E32"(3'-(G!!%!$"-(A7%#%-"(@32$(:::>Q (:.%-> A712"5"(E&72$(&) ($*"(l"$*"2,3'-!/(PE*3.&$/Q(eLU> (:.%-> Supreme Court of the Netherlands, “Chabot,” 331.

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as depression, psychosis, or a personality disorder.NU C. Changes to the Oregon System: Mandatory Psychiatric Screening ( _2"4&'b!(1*<!%#%3'63!!%!$"-(!7%#%-"(,30(%!(#&'!%!$"'$(0%$*($*"( recommendations above insofar as it bans euthanasia, limits assisted suicide to physicians, maintains centralized control over the process, and 12&*%.%$!(3##"!!(.<(5"'$3,,<(%,,(13$%"'$!>((X*"(_2"4&'(12&#"-72"!(#&7,-( be strengthened, however, by mandating a psychiatric screening process before patients can use physician-assisted suicide. Though both the at$"'-%'4(3'-(#&'!7,$%'4(1*<!%#%3'(%'(_2"4&'(#3!"!(32"(2"a7%2"-($&(,&&8( for psychiatric illness, doctors could overlook symptoms of depression &2(&$*"2(5"'$3,(%,,'"!!"!>((:'(LMMW/('&'"(&) ($*"(ZW(13$%"'$!(%'(_2"4&'( who used physician-assisted suicide were referred to a psychiatrist.NW A%5%,32(!$3$%!$%#!(32"(3=3%,3.,"()&2(LMM]/(%'(0*%#*('&'"(&) ($*"(UZ(_2"4&'( patients who used physician-assisted suicide saw a psychiatrist.50 A New England Journal of Medicine article argues that “not all patients in _2"4&'(0*&(2"a7"!$(3(1*<!%#%3'b!(3%-(%'(-<%'4(32"(3-"a73$",<(!#2""'"-( for depression and that ‘some potentially ineligible patients’ may have received a prescription for a lethal drug.”51 To prevent patients from using physician-assisted suicide for the wrong reasons, states which legalize physician-assisted suicide should mandate psychiatric evaluations by an outside physician before obtaining lethal drugs, even if the attending or consulting physician does not have concerns about the patient’s mental status. These psychiatric evaluations must be thorough and focus on differentiating the symptoms of depression from a competent decision to end life. This policy recommendation seeks to reverse the default as!751$%&'(%'(_2"4&'($*3$(13$%"'$!(32"(5"'$3,,<(#&51"$"'$> D. Changes to the Oregon System: Forming Committees to Provide a PreAuthorization Process To ensure a system that protects patients even more from abus"!/(3(!"#&'-(#*3'4"(!*&7,-(."(53-"($&($*"(#722"'$(_2"4&'(1&,%#<()&2( physician-assisted suicide. States that are considering legalizing physician-assisted suicide should develop pre-authorization committees which follow patients from the initial written or oral request for physician-as48 49 50 51

Underhill, “End of Life Care.” (PLMMW(A75532<(&) (_2"4&'b!(B"3$*(0%$*(B%4'%$<(G#$>Q Steinbrook, “Physician-Assisted Death.” (:.%->

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sisted suicide to the patient’s self-administration of the lethal medication. E722"'$,</(_2"4&'(53'-3$"!($*3$($*"(_2"4&'(B"132$5"'$(&) (9753'( Services monitor patients once the prescription for the lethal medication has been authorized.52 The Board only has the authority to record what is happening, noting whether a patient who was written a prescription actually took the drugs, and if any clinical complications were associ3$"-(0%$*($*"(!7%#%-">((X*"(_2"4&'(C&32-(&) (Y"-%#3,(dH35%'"2!(*3!($*"( authority to recommend action against physicians who do not follow guidelines, but these recommendations only take place after the patient has already died.53 The Netherlands conducts a more extensive post-as!%!$"-(!7%#%-"("H35%'3$%&'/(0%$*(+="(2"4%&'3,(#&55%$$""!(0*%#*(P%'="!$%gate each reported case and assess whether or not the criteria are met.”54 These committees do not have the authority to discipline physicians or "="'(4%="(2"#&55"'-3$%&'!($&(12&!"#7$"(3(1*<!%#%3'v$*"!"(1&0"2!(32"( reserved solely for the health inspectorate and the prosecution service.55 States that wish to legalize physician-assisted suicide should implement pre-authorization committees that become involved in a patient’s physi#%3'63!!%!$"-(!7%#%-"(12&#"!!()2&5($*"(="2<(+2!$(2"a7"!$>((X*"!"(#&55%$tees would individually review each case, ensuring that before a patient commits suicide, the proper consent has been obtained, the patient is competent and has been adequately screened for a mental illness, and all &$*"2(!3)"4732-!(32"(%'(1,3#"()&2($*"(13$%"'$>((:) (3,,($*"(2"a7%2"-(!3)"4732-!(*3-('&$(.""'()7,+,,"-/(&2($*"(13$%"'$(03!()&7'-($&(."(#&"2#"-(&2( suffering from a mental illness, the committee would have the authority to prevent the release of lethal medication or postpone the prescriptionwriting process until all requirements had been met. Conclusion This paper has reviewed U.S. aid-in-dying policy and compared %$(343%'!$(1&,%#%"!(%'($*"(l"$*"2,3'-!(3'-(A0%$f"2,3'->((_'(.3,3'#"/($*"!"( comparisons recommend a change in U.S. policy to legalize physicianassisted suicide. States wishing to legalize aid-in-dying should construct 1&,%#%"!($*3$(32"(!%5%,32($&($*3$(&) (_2"4&'/(0*%#*(*3!(,"43,%f"-(&',<(1*<sician-assisted suicide and does not provide mentally ill patients access to physician-assisted suicide. Furthermore, states should implement two 52 53 54 55

(:.%->/([ZM (:.%->/([ZM (:.%->/([]N (:.%->

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3--%$%&'3,(!3)"4732-!($*3$(!$2"'4$*"'(_2"4&'b!(#722"'$(1&,%#<n(53'-3tory psychiatric evaluations for all patients requesting physician-assisted suicide, and pre-approval committees that must approve patients before they receive a prescription for lethal medication.

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