Volume VIII Issue i

Volume VIII Issue i

The Bioethics of Intersex: A Balancing Act

Also in this issue: Animal Euthanasia The Ethics of Medical Repatriation Presumed Consent

Penn Bioethics Journal and Society The Penn Bioethics Journal (PBJ) is the nation’s premier peer-reviewed, undergraduate bioethics journal. Established in 2004, the Journal features and provides a venue for the contributions of undergraduates to bioethics. The PBJ, embracing the interdisciplinary focus of bioethics, reviews and publishes reports of empirical research and analysis of previous work -- addressing debates in medicine, technology, philosophy, public policy, law, theology and ethics among other disciplines.

The biannual Journal also features news briefs and editorials reviewing current bioethical issues, as summarized by our undergraduate editorial staff. Undergraduate editors and authors have a unique opportunity to get involved with the peerreview process through the collaborative and rigorous review and preparation of the PBJ. With an audience ranging from scholars in the field to a broader public seeking unbiased information, the Penn Bioethics Journal scholastically involves all undergraduates interested in the extensive field of bioethics.

Email bioethicsjournal@gmail.com to get more information about bioethics at Penn.

www.bioethicsjournal.com www.dolphin.upenn.edu/bioethics

Archived editions of the Journal and information about the submission process can be found on our website: http://bioethicsjournal.com The editorial staff also focuses on expanding boundaries of Penn undergraduates by hosting campus-wide events through the Penn Bioethics Society. These include formal lectures, case study presentations, public debates, debriefing of current bioethical issues and student-led conversations.

To receive our weekly newsletter, apply to join our editorial staff, or make any inquiries, please email penn.bioethics.society@gmail.com The Penn Bioethics Journal is published twice a year by the University of Pennsylvania, Philadelphia, PA. All business correspondence, including subscriptions, renewals, and address changes, should be addressed to the Penn Bioethics Journal, 3401 Market Street, Suite 320, Philadelphia, PA 19104. www.bioethicsjournal.com Manuscripts for publication should be submitted according to the submission rules on the website: www.bioethicsjournal.com/submit.html Subscription rates are by request. Permission must be requested for any kind of copying, such as copying for general distribution, advertising or promotional purposes, creating new collective works, or for resale. Requests for these permissions or further information should be addressed to bioethicsjournal@gmail.com Copyright Š 2012 Penn Bioethics Journal, Philadelphia, PA. ISSN: 2150-5462

PBJ Penn Bioethics Journal EDITOR IN CHIEF Andrew Jakubowski PUBLISHER Yunica Jiang MANAGING EDITORS Vinayak Kumar Sofia Liou Lilian McKinley Anand Muthusamy Aditi Verma ASSOCIATE EDITORS Sinead Benyaminov Diana Blidarescu Klyde Breitton Lucy Chen Shayan Cheraghlou Megan Dwyer Andy Guo Yunica Jiang Jacqui Kemmer Georgio Legerme Amy Li Robin Lo Loren Miller Zaina Naeem Ruchita Pendse Nitin Prabhakar Sudesh Raju Shelby Rosario Shashank Sirivolu Kathleen Sun Mary Sun Chidera Ufondu Andrew Wadley Garrrett Young Nikolai Zapertov ASSISTANT PUBLISHER Kathleen Sun BUSINESS MANAGER Dara Bakar FACULTY ADVISOR Jonathan Moreno, Ph.D.

Questions or Comments?

Please direct all inquiries to the Editor in Chief at bioethicsjournal@gmail.com

Contents 4

Letter from the Editor in Chief Andrew Jakubowski

Bioethics in Brief 5 Euthanasia of Animals that Pose a Threat to Humans Improving Electronic Health Records Raises Ethical Questions in Clinical Practice

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Massachusetts Voters Reject Measure to Legalize Physician-Assisted Suicide Nanotechnology: Seeing Through Solid Layers

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Oscar Pistorius: Olympian and Paralympian

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Current Legal and Ethical Thinking on Medical Repatriation Influenza Research: The Line between Safety and Science

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Proposed Changes to Donor Kidney Allocation Pose Ethical Questions

Articles 10

Medical Experimentation: Chimpanzee versus Infant

13

Protecting the Rights of the Intersex Newborn

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Presumed Consent: A Solution to the Organ Shortage

Daphne Rein-Weston, Princeton University

Alissa Aboff, Rutgers University

Raquel Macgregor, University of Pennsylvania

Letter from the Editor

Andrew Jakubowski Editor in Chief

Dear Readers, Thank you for picking up the thirteenth issue of the Penn Bioethics Journal: Volume VIII, Issue i. Our Journal features scholarly articles and informational briefs addressing ethical debates in medicine, technology, genetics, philosophy, public policy, law, and theology. This particular issue features pieces on a diverse range of topics, including intersex conditions, organ donation, and medical repatriation. This degree of variation within the field of bioethics is what makes it so interesting and exciting.

Penn Bioethics Journal

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As a staff, we aim to develop a publication in which students can showcase thoughtprovoking papers. We also hope to create a publication that engages readers and encourages everyone to explore the field of bioethics. Our ultimate goal is to enable readers to develop their own opinions on the bioethical issues discussed.

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We invite you to become an active participant in the rapidly growing field of bioethics. Information can be found online about submitting an article, an editorial, or a news brief.

Until then, enjoy your next bite of PBJ.

Andrew Jakubowski Editor in Chief University of Pennsylvania, C’13

Bioethics in Brief

Bioethics in Brief Euthanasia of Animals that Pose a Threat to Humans With the world’s population at nearly seven billion people, it is unsurprising that humans often come into conflict with wildlife. As illustrated by a boar in Berlin that attacked and injured four people in late October, animals sometimes do not live in harmony with people. As the boar was a threat to the citizens of Berlin, a police officer euthanized the boar after being bitten himself by the animal.

Berlin is certainly not the only place where wildlife management is a problem. This past September, when a lioness and her cubs turned up in the neighborhood of a science writer in Nairboi, Kenya, a discussion of what to do with the suburban lion was brought up when a lioness and her cubs turned up in the neighborhood of a science writer in Nairboi, Kenya. The lioness had escaped from the nearby Nairboi National Park. Due to the high density of lions in the park, the lioness was forced out of park by other lions. However, once the lioness was captured, she was returned to the Meru National Park, an action many carnivore biologists call inhumane. Many carnivore biologists call this action inhumane. As Dr. Packer said, “Sending them to Meru is a death sentence.” Kenya national parks are already overcrowded by lions and sending more lions to the park will only cause these

animals to be forced to the boundaries and pushed out of the park again. Dr. Packer and other specialists in his field pose that the best option for the animals is euthanasia.

Dangerous animals cannot live peacefully in areas with high human population. Additionally, the translocation of these animals to places where there are too many individuals and not enough resources to support these animals results only in death. Consequently, according to this data the sad truth is that in order to avoid the slow death by starvation of these animals, sometimes the most humane solution is euthanasia.

-Lilian McKinley, University of Pennsylvania Dloniak, Stephanie M. “Suburban Lions Present a Conundrum.” New York Times. Arthur Ochs Sulzberger, Jr., 10 Sept. 2012. Web. 08 Nov. 2012. <http://www.nytimes.com/2012/09/11/science/suburban-lionspresent-a-conservation-conundrum-in-africa.html?_r=0>.

“Wild Boar Attack Leaves Four Injured in Berlin.” The Guardian. The Guardian News and Media, 30 Oct. 2012. Web. 08 Nov. 2012. <http:// www.guardian.co.uk/world/2012/oct/30/wild-boar-attack-berlin>.

Massachusetts Voters Reject Measure to Legalize Physician-Assisted Suicide bioethicist Art Caplan uses precedence to illustrate that such a measure has not been abused in Oregon or Washington. In fact, few terminally-ill patients request for lethal pills, and even fewer actually take them. That said, supporters such as Caplan argue that legalizing assisted suicide “puts a choice in the hands of a very few who may not use it, but value having it.” It becomes empowering, so to speak. Even though the so-called Death with Dignity Act failed to pass in Massachusetts this time around, what is certain is that conversation regarding end-of-life care will carry on.

-Sofia Liou, University of Pennsylvania

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Caplan, A. (2012, November 01). Ethicist: Mass. should legalize physician-assisted suicide. Retrieved from http://vitals.nbcnews. com/_news/2012/11/01/14837180-ethicist-mass-should-legalizephysician-assisted-suicide?lite Jones, A. (2012, November 05). Bay staters to vote on physician-assisted suicide. The Wall Street Journal. Retrieved from http://blogs.wsj.com/ law/2012/11/05/bay-staters-to-vote-on-physician-assisted-suicide/ Roberts, C. (2012, November 07). Massachusetts voters narrowly defeat question 2, measure that would have allowed physician-assisted suicide for terminally ill patients read more: http://www.nydailynews.com/lifestyle/health/mass-votes-physician-assisted-suicide-article-1.1198305

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Voters in Massachusetts headed to the polls on Election Day to vote on a handful of local and national issues, including whether or not physician-assisted suicide should be legal in the state. This ballot measure would have made Massachusetts the third state, after Washington and Oregon, to legalize the practice. More specifically, if the measure were passed, terminally ill patients, defined here as patients whose physicians say they have six months or less to live, would be allowed to obtain lethal doses of medication given that they make two oral requests at least fifteen days apart and also have a written request signed by two witnesses.

The measure was narrowly defeated by a 51-49 margin.

Supporters of the measure say it is the right of terminally-ill patients to end their suffering; sick people should not have to suffer needlessly. Opponents, however, point out that (1) medical prognoses are not always correct, (2) the bill has the potential to be misused or abused, and (3) assisted suicide is ethically at odds with the medical profession. In addition, critics say the measure itself was poorly written in that it lacked basic safeguards, such as precisely defining “mental competency” and notifying the patient’s family members.

In response to arguments surrounding misuse and abuse,

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Bioethics in Brief

Improving Electronic Health Records Raises Ethical Questions in Clinical Practice It has now been more than eight years since Dr. David J. Brailer, the first national coordinator for health information technology, promoted the transition from paper charting to digital record-keeping in clinical care. The recent passing of the Affordable Care Act is expected to further increase the use and scope of technology in maintaining patients’ confidential medical information.

At the National Institutes of Health Clinical Center in Bethesda, MD, all medical staff are required to undergo online training before using the digital Clinical Research Information System (CRIS). Epic Systems provides electronic health records records (EHRs) for research institutions such as Johns Hopkins Medicine and health plans such as Kaiser Permanente. As utilization of EHRs increases, the technology used to store these records is constantly being revised to keep up with the needs of both medical staff and insurance companies. Testing and updating these systems, however, still raises a number of ethical issues despite the progress that has been made. At NIH, CRIS is prone to shutdowns anytime the system is being updated. If a new or updated electronic system malfunctions or shuts down altogether, medical staff must resort to paper charting methods and may lose access to important digitally-stored information, such as a patient’s medical history or key drug allergies.

Senior medical staff have expressed concerns about the ability of younger staff to revert to paper charting practices in the event of electronic system crashes. Furthermore, senior medical staff at university health systems are concerned

that a complete, permanent transition to EHRs records may improve efficiency at the cost of attentiveness to the more nuanced aspects of patient care. Potentially life-threatening errors in EHRs have sometimes been traced back to sloppy copy-and-pasting by medical staff who are under severe time constraints. Additionally, it is difficult for staff to keep up with electronic systems that are constantly undergoing improvements – as EHR technology continues to be refined, ideally the connection between the programmers designing the technology and the medical professionals who must be trained to use it will continue to be refined and improved upon as well -Ali Ruth, Washington University in St. Louis Clinical Research Information System at the National Institutes of Health.

(2012, October 18). Retrieved from http://cris.cc.nih.gov/index.html.

Freudenheim, M. (2012, October 8). The ups and downs of electronic medical records. The New York Times. Retrieved from http://www. nytimes.com.

Freudenheim, M. (2012, January 14). Digitizing health records, before it was cool. The New York Times. Retrieved from http://www.nytimes. com.

The Hastings Center Bioethics Forum. Retrieved from http://www. thehastingscenter.org/Bioethicsforum/ Lohr, S. (2012, March 5). Digital records may not cut health costs, study cautions. The New York Times. Retrieved from http://www.nytimes. com.

White, R. (2012, June 19). Electronic health records: Balancing progress and privacy.

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Nanotechnology: Seeing Through Solid Layers

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In the Netherlands, nanoscientists have developed a technique that allows them to “see through” solid, opaque barriers such as glass and paper. These materials, although solid and impenetrable to the naked eye, let a small amount of highly diffused light through. Instead of trying to make sense of these weak signals, the researchers shine a laser on the barrier that scatters all of the outgoing light. A computer program then decodes the light patterns and reproduces a viewable picture. There are existing methods that also employ a pattern-decoding technique, but this newly developed method is the first that operates by using the non-scattered light. According to field experts and the paper’s co-authors, the thickness through which the program can “see” and the accuracy of its image capture set it apart from anything else in use today.

While this technology is still in its infancy – co-author Alan Mosk said that “twenty years in the future … we might have a device the size of an iPhone that you could hold on the scattering... and you’d be seeing what’s behind it” – its potential uses raise a number of important questions. Aside from its important medical uses in non-invasive scanning and scientific uses in nanotechnology, the scanning device may potentially be used in covert operations. Those concerns are unlikely to be addressed until later in development, as the

technique currently requires the user to point a bright laser at the subject. However, it is important to realize that the implications may extend far beyond simply reading a letter in an envelope. Even now, the technology can be used to see inside unopened computer chips and material protecting classified documents.

If such a scanning device is eventually mass produced, it could be used to steal information or invade the privacy of others. Furthermore, reproducing the technology on a wide scale could lead to copycat technologies capable of penetrating thicker material or perhaps even returning false, misleading images. How will the sensitivity of barrier penetration be controlled? Should there be strict limits on its use, and how should those limits be enforced? The research team has clearly made an exciting breakthrough, but it will be important to not lose sight of the ethical issues raised by the device as it moves towards commercialization.

-Mary Sun, University of Pennsylvania Agence France-Presse, (2012, November 8) Scientists ‘see through’ solid layers. Retrieved from <http://www.theaustralian.com.au/ news/world/scientists-see-through-solid-layers/story- e6frg6so-1226512946407>.

Bioethics in Brief

Oscar Pistorius: Olympian and Paralympian Oscar Pistorius waved the colorful South African flag during the closing ceremony of the London Olympics this past summer. While he won no medals, Pistorius gained prominence as the first person without intact biological legs to compete in an Olympic running event. Nicknamed the “Blade Runner,” Pistorius wears carbon-fiber prosthetics below the knee called “Flex-Foot Cheetahs,” which some have argued give him an unfair advantage over traditional flesh-and-blood legs. After appealing the International Association of Athletics Federation’s (IAAF) original decision to exclude him from the Olympics, Pistorius advanced to the semifinals of the 400 meters and competed as part of the 4 by 400 relay team.

in a straight line is balanced out by weaknesses in starting from the block and sprinting to the finish, as well as the fact that the rest of his body does get tired, though the prosthetics do not. Still, even without that competitive edge, some were still unsure about whether he should compete in the Olympics, since it would call into question the exact purpose of the sport. One should be able to compare performances between athletes now and athletes in the past, along with athletes in the future, but Pistorius, with his prosthetic legs, represents such a dramatic change from past runners that he risks changing the concept of fair sport altogether.

Still, others point to Pistorius’ drive and determination as reasons for why he was allowed to compete in the Olympics because he did reach the times necessary to qualify. Though his prostheses have existed since the 1990s, no one else has been able to match his times. This suggests that Pistorius has been able to achieve his success through his own training, not because of any possible competitive advantage of his prostheses. Perhaps these values of dedication and hard work, which Pistorius embodieds, are the true mark of an athlete who can compete at the Olympics.

-Lucy Chen, University of Pennsylvania

(c) D Luckett / www.parasportimages.com

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Pistorius’ inclusion in the Olympics raised many bioethical issues. At the root of the discussion was whether his prostheses gave him an unfair advantage. If so, and he were allowed to compete, then in the future, athletes hoping for Olympic glory may seek out prostheses in desperation for that competitive edge. While this is an extreme example, athletes are already using the best shoes, suits, and other equipment to maximize their physical abilities—the next logical step is augmenting those physical abilities themselves. This would turn athletes into machines, searching for the best parts to turn themselves into the best athletes. Then, regulations would have to be put in place to determine exactly which enhancements would be allowed, causing even more confusion.

The IAAF did eventually allow Pistorius to compete, under the rationale that any advantage he has while running

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Caplan, A. (2008, May 22). ‘Blade Runner’ ruling subverts nature of sport.

(NBC News) Retrieved November 18, 2012, from Breaking Bioethics: http://www.msnbc.msn.com/id/24758518/ns/health-health_care/t/ blade-runner-ruling-subverts-nature-sport/#.UKfcmuOe8hE Dasgupta, I. (2012, August 11). Op-Ed: Is Oscar Pistorius the First Posthuman? ( John Hopkins University) Retrieved November 18, 2012, from Berman Institute Bioethics Bulletin: http://bioethicsbulletin. org/archive/op-ed-is-oscar-pistorius-the-first-posthuman/ Sokolove, M. (2012, January 18). The Fast Life of Oscar Pistorius. (The New York Times Corporation) Retrieved 11 17, 2012, from The New York Times: http://www.nytimes.com/2012/01/22/magazine/oscarpistorius.html

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Bioethics in Brief

Current Legal and Ethical Thinking on Medical Repatriation In 2010, Quelino Ojeda Jimenez, an undocumented Mexican immigrant to the United States, was injured on the job and required intensive medical treatment. After months of treatment at Advocate Christ Medical Center, the hospital decided to repatriate Ojeda and returned him to Mexico for further medical care. This issue sparked a firestorm of debate in the city on medical ethics and immigrant rights. Because of the various agents and institutions involved, there is no real standard protocol on how and when repatriation is appropriate.

Under current law, an emergency room in a hospital must accept anyone who has a condition that warrants emergency care regardless of their status. Other health institutions, such as a long-term care facility, do not have such an obligation. A problem arises in how to handle non-U.S. citizens who require such extended care beyond the emergency room. The valence of citizenship is unique because non-citizens are not eligible for government programs and encompass the population that may actually be absolutely denied care in this country (unlike citizens who may not be able to pay out of pocket).

In a recent article in the American Journal of Bioethics, Mark Kuczewski, of Loyola University Chicago Stritch School of Medicine, argues for three conditions for ethical

medical repatriation. The conditions are rooted in the primacy of fundamental ethical obligations over principles of law and agents . First, the repatriation must be justified as in the patient’s best medical interests. Second, the American hospital that is currently caring for the individual must ensure that there is appropriate medical resources to provide adequate care. Third, the patient must be informed of the repatriation and must consent to it. In the case of Ojeda, for example, the first and third principles were broken since it is unclear to what extent the hospital ensured proper care was available in Mexico. Moving forward, ethical discussions will need to focus on the intersection of the implementation of the Affordable Care Act and new immigration issues.

-Anand Muthusamy, University of Pennsylvania Graham, Judith, Schlikerman, Becky and Uribe, Abel (2011, February 11). Undocumented worker who became quadriplegic is moved to Mexico against his will. The Chicago Tribune. Retrieved from http:// articles.chicagotribune.com/2011-02-06/news/ct-met-quadriplegicimmigrant-deporte20110206_1_advocate-health-care-ojeda-mexicanhospital Kuczewski, M (2012, August 10). Can Medical Repatriation Be Ethical?

Establishing Best Practices. The American Journal of Bioethics 12 (9) 1-5. Retrieved from http://www.tandfonline.com/doi/pdf/10.1080/15 265161.2012.692433.

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Influenza Research: The Line between Safety and Science

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Influenza is a highly pathogenic virus that comes in many subtypes, characterized by the type of hemagglutinin (H) and neuraminidase (N) on the viral coat. Our seasonal flu is now H1N1, commonly known as “swine flu.” However, other strains of influenza exist. H5N1, for example, is an avian influenza that currently cannot infect humans efficiently via airborne transmission, having infected only about 608 humans as of August 10th 2012, with 359 associated deaths. Despite its low infectivity in humans, it is still a highly prevalent and pathogenic strain of influenza for birds, killing more than 100 million birds since 2003.

In an effort to understand the mechanisms by which a virus can undergo mutations to acquire pathogenesis in humans, two groups have described different methods of transforming the avian-specific influenza virus to a human-tohuman aerosol transmittable virus. A paper by Ron Fouchier of the Erasmus Medical Center in Rotterdam was submitted to Science Magazine, and a paper by Yoshihiro Kawaoka of the University of Wisconsin was submitted to Nature Magazine in 2011. Ultimately, Dr. Fouchier’s work proved that H5N1 can obtain spontaneous mutations to become more infectious in humans, and Dr. Kawaoka’s work proved that an antigenic shift in H5N1 can also increase infectivity.

Fearing that the details of the paper can be used to create new super-viruses for bioeterrorism, the U.S. National Security Board of Biotechnology asked both journals to block the publication of the papers. After a lengthy debate, the United States is now “drafting new guidelines for dangerous research” and there has been a “voluntary moratorium

on this line of flu research.” Recently, the authors were given the chance to revise the papers such that they do not provide information that can be used by terrorists, and the papers have since been published. Many have wondered the ethics of blocking and revising the papers in the first place: can such an act actually prevent terrorist acts? Would this information be more useful to scientists trying to prevent disease than those trying to spread it? As the authors proved, the process itself of generating these viruses is straightforward enough that the possibility is already within reach for terrorist groups. How can we effectively regulate potentially dangerous research? This influenza research served as a warning sign that our current regulations on research have yet to effectively consider the bioethics of knowledge itself, a question that is sure to be debated in the upcoming years as the field of science expands.

-Vinayak Kumar, University of Pennsylvania Jin, X. W. (2012). 2012–2013 influenza update: Hitting a rapidly moving target. Cleveland Clinic Journal of Medicine, 79(1), 777-784. doi: 10.3949/ccjm.79a.12151 McNeil Jr., D. (2012, June 21). Bird flu paper is published after debate. The New York Times. Retrieved from http://www.nytimes. com/2012/06/22/health/h5n1-bird-flu-research-that-stoked-fears-ispublished.html US bioethics panel approves bird flu studies. (2012, March 30). The British Broadcasting Corporation. Retrieved from http://www.bbc.co.uk/ news/world-us-canada-17569494

Bioethics in Brief

Proposed Changes to Donor Kidney Allocation Pose Ethical Questions (like the priority given to pediatric patients) are still present in the new proposed policy. The most contentious provision of the new policy is that the “best” 20 percent of donor kidneys will be matched first to the patients with the top 20 percent EPTS. While the new policy does a better job at maximizing life years from the pool of donor kidneys, the new preference to patients with higher potential life expectancies weighs efficiency over equity in distributing donor organs. The OPTN/UNOS Kidney Transplantation Committee Chair, John Friedenwald, has argued that simulations of implementing the proposed policy have not shown to impact equity in kidneys to any age group by more than five percent. He claims that by directing the kidneys with the longest useful life to the patients who will live the longest, the new policy will reduce the potential for patients returning to the list for second transplants.

-Megan Dwyer, University of Pennsylvania Ross, L. (2012, November 12). New kidney allocation proposal is ethically unacceptable. U.S. News and World Report. Retrieved from http:// www.usnews.com/opinion/articles/2012/11/12/new-kidney-allocation-proposal-is-ethically-unacceptable Friedenwald, J. (2012, November 12). New Kidney Transplant Policy Will Save More Lives. U.S. News and World Report. Retrieved from http://www.usnews.com/opinion/articles/2012/11/12/new-kidneytransplant-policy-will-save-more-lives Press Release. (2012, September 21). Public comment sought on proposed revisions to deceased donor kidney allocation policy. Retrieved November 16, 2012, from U.S. Department of Health and Human Services website. http://optn.transplant.hrsa.gov/news/newsDetail. asp?id=1579 Commentary from OPTN/UNOS Kidney Transplantation Committee Chair, John Friedewald. (2012, October 3). Retrieved from Bill of Health website: http://blogs.law.harvard.edu/billofhealth/2012/10/03/ commentary-from-optnunos-kidney-transplantation-committeechair-john-friedewald/

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Every year in the United States, patients with end stage renal disease (ESRD) languish on dialysis as they wait to be matched with a donor kidney. There are currently over 93,000 people waiting for kidney transplants, and about ten percent of them die every year because there are many more people on the waiting list than there are kidneys available to these patients. The current allocation system, run by the Organ Procurement and Transplantation Network (OPTN) in conjunction with the United Network for Organ Sharing (UNOS), matches patients to kidneys based mainly on time spent on dialysis on the waiting list. Critics contend that this often leads to inefficient use of valuable donor kidneys.

Under this policy, a patient with a lower remaining life expectancy might be matched with a kidney he or she will only use for a few years, while a patient with a higher potential life expectancy dies waiting for a transplant. Proponents argue that, while this policy may not be optimally efficient, it is fair to patients. It is a standard queue; those who have been waiting longer will be matched first. The policy does not discriminate based on potential life expectancy after transplant. Some ethicists argue that doing so would be valuing one patient’s life as more important than another’s.

But faced with increasing numbers of patients seeking kidney transplants, OPTN has recommended a new policy for matching kidneys to donors.

The Kidney Transplant Committee for OPTN/UNOS has recently released a new proposal for matching donor kidneys to patients that takes into account the Kidney Donor Profile Index (KDPI), which would indicate the length of time the kidney would likely remain functioning once transplanted and the Estimated Post-Transplant Survival (EPTS) of the patient. The authors of the new policy seek to better match the kidneys’ KDPI to the patients’ EPTS for a more efficient allocation of donor organs. Additional exemptions and considerations present in the existing policy

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Article

Medical Experimentation: Chimpanzee versus Infant

Penn Bioethics Journal

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Daphne Rein-Weston‡

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This work provides an answer to a question regarding the morality of medical experimentation on animals.

Forming the basis of my argument is the following scenario: suppose you can perform medical experiments for promising, lifesaving new drugs on either a chimpanzee or on a disabled infant that has been abandoned by its parents and has cognitive abilities are on par with the chimpanzee’s. Are there any cogent reasons to prefer performing the experiments on the chimpanzee? There are no reasons to prefer performing medical experiments on a chimpanzee over an orphaned, disabled infant of comparable cognitive abilities because the chimpanzee and the described infant have no difference in their abilities to suffer and because the two agents are equal in their inabilities to consent to the experiments. While I consider the example of a chimpanzee, these conclusions can be applied to all animals. I argue that suffering an enduring, unhappy experience felt by sentient beings is the main point upon which to evaluate the ethical grounds of experimentation. Suffering is the condition that implies moral significance. There is no moral distinction between the chimpanzee and the infant, and to argue the contrary would be a form of “speciesism,” as defined by Peter Singer. As a work of Jeremy Bentham’s clarifies, “The question is not, Can they reason? nor Can they talk? but, Can they suffer?” (Singer 50). Proponents of animal research must be prepared to support experimentation on the orphaned, disabled infant who, like the chimpanzee, cannot consent.

Why would an ability to suffer be the main point upon which to evaluate the ethical grounds of medical experimentation? In order to answer this question, I turn to the reasons that a conscious, clear-thinking adult might present to agree to participate in a medical trial for a newly discovered drug. If the adult is affected by an illness which the drug is meant to cure, then the possible reasons for his compliance include: (a) the known side effects of the drug are minor compared to the illness by which he is already affected, (b) the probability of maintaining or improving his present condition is greater than the probability of worsening his condition, (c) the unknown effects of the drug are minimal and/or harmless. Of course, others would provide other exceptions, such as monetary rewards being more significant than their own health. However, we will consider only the logical reasons presented as (a)-(c).

Reasons (a) and (c) minimize suffering, which is defined in the introduction as the enduring, unhappy experience ‡ Princeton University, drein@alumni.princeton.edu

felt by sentient beings. Reason (b) maximizes happiness, or in other words provides the opposite of an ongoing, unhappy experience. If the reasons for volunteering oneself as a test subject are to minimize suffering (or to maximize happiness), then it would logically follow that incentives to decline participation in a medical experiment would be to avoid the possibility of suffering.

As stated in the introduction, the ability to suffer implies a certain moral status. DeGrazia points out that the word “suffering,” when used as a description of an animal’s mental state, gives moral significance to the animal. Unlike words which imply uncomfortable yet transient feelings, such as “pain” or “distress,” the word “suffering” refers to a longer-term state of mind that is not feasible in an insect, for example (DeGrazia 27). In terms of ability to suffer, humans and animals are no different. Two points of objection arise here: one, the infant should have a higher moral status based on its potential to become a person, and two, the interests of the infant should be considered over the chimp because of its connection with other concerned humans. However, both of these objections are quelled by the careful construction of the scenario being considered: the infant is disabled, which we assume to mean that the infant’s cognitive abilities will never surpass those of the chimpanzee, and the infant has no family. While the scenario purposefully sets the infant’s intelligence on par with that of the chimpanzee, it is still worthwhile to consider the underlying predisposition we, as humans, have to prefer testing on the chimpanzee over the infant. Consider, for example, Ringach’s allusion to a burning house scenario, in which one must choose to save either a child or an animal, such as a mouse. Our instinct is to save the child, as the child is an extension of our human family. This practical bias illustrates our rejection of the “all-or-none moral status” theory that would grant the animal and child an equivalent moral status and thus require an arbitrary choice of which to save (Ringach 5). However, I cannot agree with Ringach’s conclusion that the rejection of this theory is tantamount to the approval of a certain degree of animal testing. Even if one believes that “the morally relevant differences are enormous” between humans, cats, and rats, this belief does not in itself justify the use of cats, for example, to benefit humans (Cohen 867). Animal experimentation is distinct from simply choosing to save a creature of higher moral status because it necessarily involves the active placement of the animal in conditions designed for the benefit

Medical Experimentation: Chimpanzee versus Infant

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man). Because the two candidates have the same capacity for suffering, I cannot agree that one candidate should be preferred over another. Consider, for a moment, if the roles were reversed. If a chimpanzee colony needed the development of a particular drug or required further insight into a chimpanzee-specific disease via testing, is it tolerable to perform testing on a human infant for that drug because we are similar species from a common ancestor? Should it be tolerable for humans to test on chimpanzee infants to further scientific and medical needs of humans, then it should be tolerable to test on human infants to further the needs of chimpanzees. The second consideration, ability to consent, should, if anything, lead us to prefer consenting humans over non-consenting animals. If human trials are inappropriate for new drugs, then we must cease to use animals in laboratories and dedicate our research toward achieving a more complete understanding of the human physiological system in order to eliminate the suffering of animals and humans alike.

As a final consideration, does the promise of the drug dictate whether or not it should be tested on animals? If, for example, the drug is likely to prevent the suffering of 2,000 humans, how many chimpanzee sacrifices would its testing warrant? To be consistent, it must warrant the same number of disabled, abandoned infants of similar cognitive abilities to the chimpanzee. The uncertainty of results is inherent in biomedical research, and in anticipation of a reluctance to test on mentally disabled infants, even for a very promising drug, I argue that all testing on chimpanzees, and thus all sentient animals, must stop.

My stance on animal testing is more stringent than a mere balancing of expected utility against the suffering of animals. While the expected utility of the drug may be impressive, if it is to be justifiably tested on animals, it must also be justifiably tested on an infant of similar cognitive abilities. The two criteria upon which I have based my argument, suffering and inability to consent, show promise in terms of developing new methods of research. Consenting, informed patients are the best alternative to animal testing for new drugs that have a high potential of saving lives. In no circumstance should a sentient being be placed, especially without consent, in a position of suffering. I would argue that in the name of research, no testing may be performed on any sentient being whatsoever, without that being’s consent.

If the being is unable to consent to the research, it may not be used as a tool to further research. Unwilling participation in research studies, arising from an inability to either comprehend or express consent, is the crux of my argument against both testing on a chimpanzee and on a human infant.

While in the near future the strides of scientific research may be significantly impaired by these strict guidelines, it is a challenge to scientists to develop a long-term solution that would satisfy our need to better understand human physiology and its interactions with new drugs.

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of humans.

Neither the animal, in this case a chimpanzee, nor the infant can consent to participation in a medical experiment.

Therefore, the experimenter intervenes in the life of his test subject and manipulates the test subject’s experience.

While the issue of how the test subject is treated—if the subject is injected with a tumor or if the subject is eventually euthanized, for example—has not been discussed, I assume that the treatment of the subject entails suffering.

Or, in other words, a more communicative subject would not give informed consent to the testing. One may argue that an animal may be kept in a hospitable environment, in a clean cage where it is well fed and no immediate pain is inflicted. One must then be prepared to place the infant in the exact same environment as the animal and believe that it does not need to be saved. As Emlen states in his defense of his research experiment on jacanas, “selective animal experimentation” is needed “to enhance our general knowledge of the behavior and ecology of representative species” so that we can “minimize pain and suffering in nonhuman species” (Emlen 408). Emlen’s viewpoint raises another nuance that experiments may not be designed to cure a specific disease but may instead be designed to simply further general scientific knowledge. I would argue that regardless of the intent of the research, to be ethically consistent with our current practices, we must be willing to perform the experiments for new drugs on the disabled, abandoned infant as well. Most people, I assume, would recoil at the idea and be unable to test on the infant. I believe we would not experiment on an infant, even if a scientific breakthrough depended on such experimentation, because we would view our actions as harmful to the infant’s well-being. Our moral instincts instruct us not to submit a naïve human to testing that could render either immediate or future suffering.

To give an “equal consideration to the interests of animals,” we would not, then, be justified in testing on chimpanzees or any other sentient animal (Singer 58). We would be using another sentient being as a means to our end, without that being’s willing consent.

Dr. Collins of the National Institutes of Health (NIH) confirmed in December 2011 that the United States government would no longer support chimpanzee research with new grants (Gorman). He stated that we owe chimpanzees, ‘our closest relatives in the animal kingdom,’ ‘special consideration and respect’ (Gorman). Although I agree with Dr. Collins’s publicized regard for chimpanzees, I would argue that the statement incorrectly addresses the reason as to why chimpanzees must be freed from biomedical research laboratories. In consideration of their ability to suffer, mice, rats, dogs, and pigs, to name a few, must also be exempt from animal testing. Whether the animal is a close or distant relative to Homo sapiens is irrelevant. Furthermore, the report that Dr. Collins supports contains the following exception for biomedical research: testing on chimpanzees is necessary when the research cannot be done via “[another] animal or laboratory method,” and specifically, “it must be unethical to do the research on humans” (Gor-

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Article References

About the Author

Daphne Rein-Weston is a recent graduate from the Princeton University, where she majored in Mechanical and Aerospace Engineering.

Mr. James Hunter is the faculty sponsor for this submission. He is an Assistant in Instruction in Politics at Princeton University.

Cohen, Carl. Case for the Use of Animals in Biomedical Research. The New England Journal of Medicine 315 (14): 865-870.

DeGrazia, David. Ethics of Animal Research. Cambridge Quarterly of Health Care Ethics, Vol. 8, 23-34.

Emlen, Stephen T (1993). Ethics and Experimentation: Hard Choices for the Field Ornithologist. The Auk 110 (1993): 406-09.

Gorman, James. (2011, December 19). Elevation of the Chimp May Reshape Research. The New York Times, 19 Dec. 2011.

Ringach, Dario. (2011, October). Use of Nonhuman Animals in Biomedical Research. The American Journal of the Medical Sciences 342 (4): 305-313.

Singer, Peter. (2011). Equality for Animals. Practical Ethics (48-70).

New York: Cambridge University Press.

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Protecting the Rights of the Intersex Newborn

Protecting the Rights of the Intersex Newborn Alissa Aboff‡ When a newborn’s genitals are neither fully male nor fully female, parents have the option to authorize genital-normalizing surgery on their intersex child. The surgery removes and rearranges genital tissue in order to construct genitalia that better match the child’s assigned gender. Advocates of the traditional protocol for the treatment of intersex children hold that the surgery will ensure normal psychosexual development. However, in the last decade, intersex advocates have begun to question the legality of genital-normalizing surgery in infancy, suggesting that surgery interferes with the child’s right to autonomy. Because genital-normalizing surgery may affect fertility and the capacity for sexual sensation, ethicists hold that there should be a moratorium on such surgery. I will demonstrate that parents do not have a legal right to authorize surgery on their intersex child, and that a moratorium would best protect the intersex child’s best interests.

Introduction

Defining the Intersex Condition

An intersex person is traditionally defined as any individual with some type of sexual dimorphism at the chromosomal, gonadal, or hormonal levels (Blackless et al, 2000).

However, some counter this traditional definition, describing it as too broad. Leonard Sax, an American psychologist focused on gender differences, presents a more narrow definition of intersex and includes only those who present outward signs and symptoms at birth (Sax, 2002). He does not include Klinefelter syndrome or Turner syndrome in his definition of intersex. Individuals with Klinefelter syndrome are genetically 47, XXY and live as male; individuals with Turner syndrome are genetically 45, XO and live as female (Gold, 2001). They do not, however, typically display ambiguous genitalia at birth. Individuals with Klinefelter syndrome may develop small breasts, but their genitalia at birth are clearly defined as male. Although individuals with these syndromes would be considered intersex by the traditional definition (they deviate from the traditional male or female dichotomy), they are not considered intersex by Sax’s definition (they do not display ambiguous genitalia at birth). Neither definition is absolutely correct, but because this essay focuses on the implications of genital-normalizing surgery in infancy, this essay will adopt Sax’s definition of intersexuality when referring to individuals with an in-

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‡ Rutgers University, aaboff@eden.rutgers.edu

normalizing surgery forms an intricate web of social, legal, and ethical issues. Due to the difficulty in accurately determining the gender of the intersex newborn and the irreversibility of the surgery, the only morally permissible option is to postpone genital normalizing surgery until the intersex individual can decide whether surgery is an appropriate option.

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After the birth of a newborn, parents hardly expect to hear from doctors that they need to wait to give their child a name. When the gender of a newborn is not certain, parents cannot immediately be sure whether their child is a Sarah or a Sam, a John or a Julie, an Oliver or an Olivia.

In about one out of two-thousand births, the genitalia of the newborn are ambiguous – doctors are unable to definitively classify the child as male or female (Lareau, 2003).

The child falls temporarily into a third, often stigmatized, category: intersex.

Typically, doctors perform a series of tests before assigning the child a gender. But such tests are often inconclusive, and test results often contradict one another. For example, a steroid evaluation may classify the child as male, yet a chromosome analysis may deem the child female. The Intersex Society of North America holds that all intersex newborns should be assigned a gender even if test results are inconclusive (Chase, 2001). It is not the gender-assignment of an intersex child that modern ethicists and intersex advocates find unsound. Rather, ethicists call into question whether parents have the right to authorize genital-normalizing surgery on the infant. Genital-normalizing surgery “corrects” the appearance of the ambiguous genitalia by resculpting the genitals to match the child’s assigned gender.

In most cases, the surgery is not medically necessary for the intersex newborn but rather serves a highly cosmetic purpose (Ehrenreich et al, 2005). Some form of surgery has been the dominant protocol when treating intersex newborns for the past century. Only within the last decade have bioethicists truly considered the moral implications of the surgery and whether the surgery interferes with the rights of the intersex child.

The question of who has the right to authorize genital-

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tersex condition.

A common intersex condition in which the external genitalia are ambiguous is congenital adrenal hyperplasia (CAH). Individuals with CAH are genetically 46, XX (the karyotype of a normal female) but because of neonatal androgen exposure are born with virilized genitalia (Sloane, 2002). The term “virilized” in this context refers to the development of male characteristics in the genitals. Instead of an internal vaginal opening, individuals with CAH may have an elongated clitoris with an external vaginal opening or fused labia. A similar condition that instead affects genetic males is Androgen Insensitivity Syndrome (AIS), also referred to Testicular-Feminization Syndrome. AIS is a condition in which males with a 46, XY karyotype have testes in the abdomen and external female genitalia. The external genitalia during development are insensitive to androgens, the principal male hormones, and thus the penis does not form or is severely underdeveloped.

Related to this diagnosis is perhaps the most complicated of intersex conditions. Known as “true hermaphroditism,” this condition describes individuals who have both ovarian and testicular tissue (Kyu-Rae Kim et al, 2002).

Cases of mixed gonadal dysgenesis and true hermaphroditism are often so complex that a team of doctors and specialists fails to reach a consensus as to whether the child should be assigned male or female.

In the majority of intersex cases, the child is functionally healthy. If the child’s life is at risk or if the child will undoubtedly suffer physical pain if left untreated, then medical intervention may be necessary. Such cases fall outside the realm of this essay. In order to better explore social biases against intersex conditions, this essay focuses on cases in which surgery does not serve some medical function.

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The Traditional Model of Treatment During the mid-twentieth century, it was widely believed that a child’s gender identity was predominantly the result of rearing (Karkazis, 2008). This view was perpetuated by John Money, a leading psychologist who claimed that a child is born as a blank slate and gender-neutral. If an intersex child is reared as a girl, he argued, the child will come to perceive herself as a girl; if the intersex child is reared as a boy, the child will come to perceive himself as a boy. Crucial to psychosexual development and gender identity were genitalia that matched the child’s assigned gender.

In an article published in Pediatrics, Money argued, “psychosexual identity may contradict chromosomal, gonadal, or hormonal sex. It more generally agrees with the external genital morphology and the assigned sex.” (Money, 1965).

Surgery, according to the traditional model, simply allows children to develop smoothly into a defined gender.

However, case studies and scientific research suggest that the theory that a child’s gender is independent of biological factors is incorrect. The outcome of what is often referred to as the “John/Joan” case forms a critical argument against the claim that a child is gender-neutral at birth.

The case involves the treatment of David Reimer, a 46, XY

male who had his penis severely burned during circumcision in infancy. Due to the prevailing mindset that a child is gender neutral at birth, a group of psychologists led by John Money recommended that the boy be raised as a female.

At just less than two years of age, Reimer had his testicles removed. Though Money initially touted that the treatment was a success, as Reimer grew older he failed to identify with the female gender. He refused to wear dresses, insisted on urinating standing up, got into fights at school, and resisted taking his estrogen pills (Walker, 2004). At age 14, Reimer decided to live as a male and began taking testosterone supplements. In 2004, at the age of 38, Reimer committed suicide. The David Reimer case not only suggests the Money’s claims about gender neutrality were incorrect, but also highlights the dangers of trying to unreasonably force a patient into obtaining treatment that he or she does not want.

Other studies confirm the theory that gender identity is a result of both rearing and biological factors and not simply rearing alone. A study published in 2004 suggests prenatal hormone exposure plays a significant role in gender identity. The study found that women with CAH reported weaker identification as females than did women without CAH (Hines et al, 2004). This study supports the idea that gender identity is not independent of biological factors.

The traditional model is further flawed in that it advocates secrecy about the intersex condition. Proponents of the traditional approach argue that revealing the truth about an intersex child’s condition would undoubtedly cause the parents and intersex person deep psychological trauma. However, such deceptions do not prevent feelings of shame in the intersex child. Rather, deceiving the parents about the child’s true condition tends to augment feelings of shame. J. David Hester in “Intersex and the Rhetorics of healing” describes that when adults born with ambiguous genitalia describe the genital-normalizing process, they express “shame, powerlessness, isolation, and humiliation – much of it due to a lack of forthright discussion between doctors and physicians” (61). Secrecy does not protect the child from stigmatization, but instead furthers feelings of shame. Hester presents a first-hand account of a man who underwent genital-normalizing surgery at a young age. The man describes, “I remember my parents privately telling my teacher about the surgery and encouraging the teacher to lie to the class and say I was having surgery on my arm … obviously, the full truth would not have been appropriate, but it sent a signal to me that it was something of which to be ashamed” (61). Intersex children who are forced to undergo surgery in secrecy often grow up with a sense that something is wrong yet have no one to talk to about the true nature of their condition. The deception encouraged by the traditional approach leads to confusion, frustration, and shame in both the intersex person and his or her parents. Lying to patients should not be condoned on any level, especially with an issue as sensitive as genital-normalizing surgery.

Protecting the Rights of the Intersex Newborn The “Middle Ground” Approach: A Viable Option?

Are Parents Truly Informed?

Are Parents Truly Competent?

A critical component to Lareau’s argument against the middle ground approach is her contention that the parents are too emotionally charged to be considered competent

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Given the nature of genital-normalizing surgery and the lack of statistical evidence that addresses surgical outcomes, it is unlikely that parents truly know the consequences of the surgery. While doctors may be able to fully describe the medical details of the child’s condition and the surgical process, parents often remain uninformed about nonsurgical options. In one study of parents’ experiences, “only one out of ten parents had sought information outside the medical setting” (Wickstom et al, 2009). This suggests that the majority of patients do not truly consider other treatments and may not reach out to other parents of intersex children. No matter how much parents are informed about the potential risks of surgery, if they are not exposed to other options, parents cannot be considered truly informed.

Because so few studies address the outcomes of genital-normalizing surgery in infancy, doctors are unable to provide parents with hard data pertaining to the potential consequences of surgery. Hermer, an advocate of the middle ground approach, contends that because the data does not conclusively show that surgery does more harm than good, parents should retain the right to authorize surgery on their child (Hermer, 2007). However, the fact that there is lack of data refutes the claim that parents have the right to authorize genital-normalizing surgery. Parents cannot make truly informed decisions if provided with so little information. Genital-normalizing surgery is experimental in nature: few reports demonstrate that surgery is better than non-surgical options.

The lack of data often causes parents to make decisions they later regret. In several interviews, parents voice that they wish they had known more about what genital-normalizing surgery entailed before authorizing the surgery on their intersex child. One parent relates, “At the time [surgery] seemed like the right thing to do, but I should have done more research then. By now I’ve talked to people who’ve had hypospadias repair, and they’ve gone through hell. The body has ways of undoing these surgeries. He’s developed a leak... If I knew then what I know now ” (Wickstrom et al, 2009). Because so few parents seek information outside the medical setting, they are often left unaware of the potential consequences of surgery. If parents are truly informed, such consequences should come as no surprise to parents. Unfortunately, because genital-normalizing surgery is experimental in nature, even doctors cannot be sure of the likelihood of post-surgical complications. With such a dearth of information, parents cannot be considered capable of making truly informed decisions.

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The middle ground approach, a second model of treatment, fundamentally differs from the traditional approach in that it does not endorse secrecy and deception and calls for parents to be completely informed before deciding whether surgery is an appropriate option. Supporters of the middle ground approach argue that “parents who are fully educated about the risks and benefits of the different protocols are in the best position to assess what is in their child’s best interest” (Greenberg, 2006). The claim that as long as parents are completely informed about the full nature of their child’s condition, parents legally have the right to make medical decisions for their child. Laura Hermer, a professor of bioethics at the University of Texas, acknowledges that genital-normalizing surgery carries certain risks; however, she holds that once parents are informed of the potential consequences of the surgery, the appropriate course of treatment for the intersex child is up to the parents’ discretion (Hermer, 2007). This approach, some argue, protects both the interests of the parents and the rights of the child.

Though this protocol appears to be a suitable compromise, there are certain critical and insurmountable flaws in this approach. For instance, there is the assumption that parents are most fit to objectively determine their child’s best interest. It is certainly reasonable to believe that parents who authorize surgery on their intersex infant are acting with the right intentions. But because parents are closest to the child and are most immediately affected by the child’s condition, they may in fact be in the worst position to consider what is best for the child in the long run.

Lareau notes that parents are not given unchecked decision-making power. She states, “[When parents are] making decisions regarding infant medical treatment in other contexts, courts have established criteria for overriding parental decisions...the state may challenge and set aside decisions that are deemed not in the child’s best interest” (Lareau, 2003). Though those opposed to a moratorium argue parents should have the right to decide treatment for their child, the courts have established legal procedures for determining whether a parental decision may violate the rights of the child.

In cases where the patient is in some way unable to consent to surgery, the decision-making power is deferred to another party, typically a close relative of the patient. In order for parents to legally consent to surgery for the patient, three criteria must be satisfied: the parents must be competent, the parents must be fully informed, and parents must make the decision on a voluntary basis (Ford, 2001).

These criteria are meant to protect against imprudent and hasty decision-making by parents. Though proponents of the middle ground approach argue that the criteria are satisfied as long as doctors educate parents about the consequences and implications of surgery, evidence suggests that none of the above three conditions are truly satisfied. The subsequent three sections reveal that when considered from

a practical standpoint, the middle ground approach fails to satisfy the above three conditions necessary for legal informed consent.

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of giving informed consent. Lareau argues that the middle ground approach does not fully protect the well-being of the intersex child because “even if parents possess full knowledge of the arguments for and against genital surgery on infants, they can be in a fragile emotional state that may interfere with their ability to consider the infant’s best interests” (Lareau, 2003). Because parents are blinded by their own emotions, they may not be in an appropriate position to judge whether surgery is the best option.

From a psychological standpoint, initial feelings of shock and frustration may overcome rational decisionmaking. Social psychologists propose that when a child’s genitals are ambiguous, parents find themselves unable to identify with the intersex child (Wickstom et al, 2009).

Genitals are brought into the foreground, and parents are often so shocked by the genitalia that they immediately look for a way to correct the seemingly foreign body part.

Parents find their previously unquestioned view of gender suddenly threatened – with the birth of an intersex child, the belief that a person can only be male or female no longer seems valid. Because of the sudden threat to a deeply engrained view, parents are often quick to choose surgery to quickly normalize their child and to reaffirm their traditional view of the male/female gender dichotomy.

The competency of parents is further complicated by the fact that parents naturally see themselves as the protectors of their children. Norm-challenging bodies carry a certain stigma, and parent may instinctually believe that correcting the stigmatized body part will best protect the child.

However, the instinctual desire to protect their children may leave parents unable to truly weigh the benefits and risks of surgery. Lareau points to a study in which women were asked to imagine that they had been born with a large clitoris and men were asked to imagine that they were born with a micropenis. The majority answered that they would rather be left with their atypical genitalia than be surgically altered. However, Lareau notes, “the answers changed when subjects were asked what they would do for their children in the same situation” (Lareau, 2003). This blatant double-standard suggests that parents may not be in the best position to objectively determine what is best for their child. Because of the complicated emotions associated with the birth of an intersex child, parents may not be competent of making life-altering decisions for their child.

Do Parents Decide on a Truly Voluntary Basis?

Physician rhetoric may further render parents unable to make an independent, informed decision. Doctors and surgeons are quick to pathologize the intersex condition; however, in most cases, the child’s physical health is not affected by the intersex condition. David Hester in “Intersex(es) and Informed Consent: How Physician Rhetoric Constrains Choice” suggests that doctors give parents the impression that their child’s condition is a medical emergency that should be quickly corrected. Hester explains that “at no point has it been demonstrated that the gender indicators are a cause of either medical or psychosocial ‘disease.’ The

underlying conditions are treated as incidental to the overwhelming “need” to surgically alter the child to conform to norms of genital appearance. It is the rhetoric employed by the physician that pathologizes the genitalia not the condition behind the ambiguity” (Hester, 2004). By telling parents that their child will be “normal” after the condition is “cured” through surgery, physicians are suggesting to parents that the child’s condition is not normal or socially acceptable. Physician rhetoric that pathologizes the intersex condition may sway parents in favor of surgery even before parents are informed about the nature of their child’s condition.

Doctors may further influence parental decision-making by withholding crucial information from parents. Physicians may not inform parents of non-surgical options, or they may downplay non-surgical options by suggesting that only surgery can rectify the child’s condition. Intersex advocate Alice Domurat Dreger in “Intersex and Human Rights” suggests that many physicians do not inform parents about well-respected advocacy groups or tell parents that surgery is currently experimental in nature. Dreger states that “many physicians feel this sort of information is either not relevant or too political to reveal. Yet it seems to me – from conversations I’ve had with parents and with persons born with atypical anatomies – that this information is exquisitely relevant to making informed decisions” (2006). By withholding crucial information, doctors severely constrain parental choice, and parents may not be encouraged to explore other options. Because physician rhetoric is often more persuasive than informative, it is questionable whether parents opt for genital-normalizing surgery on a truly independent basis.

Conclusion Parents undoubtedly want what is best for their child, but the nature of the intersex condition often renders parents unable to make informed, competent, and independent decisions. Although physicians do not operate with bad intentions when recommending genital-normalizing surgery, surgical treatments have the potential to severely rob the intersex child of certain fundamental rights. Because genital-normalizing surgery is irreversible and cosmetic in nature and risks a child’s fertility and capacity for sexual sensation, the only morally and legally permissible option is to postpone surgery until the intersex individual can decide whether surgery is an appropriate option. As Lareau suggests, the middle ground approach should not be accepted in the legal and medical communities as a viable compromise. Only a moratorium would ensure that the intersex child has a role in the decision-making process.

Because of the stigmatization surrounding the intersex condition, parents may feel anxious and uncertain at the thought of raising an intersex child. But through discussion with professionals and with other parents of intersex children, parents can address any concerns and discover a new way of looking at their child’s condition. Though the child’s condition may be distressing at first, “if given time

Protecting the Rights of the Intersex Newborn parents can move past the initial fear and discomfort to see another reality: that they have given birth to a beautiful baby” (Karkazis, 2008). Surgery tends to treat the child’s genitalia as a disease that must be cured. But if the intersex child’s condition is not treated as a disease, it will not be perceived as a disease. With a moratorium on surgery and open, forthright discussion, the child’s ambiguous genitalia will fade into the background, and parents can shift their attention to the joy and warmth accompanied by the birth of any newborn child.

About the Author Alissa Aboff is an undergraduate at Rutgers University, where she is studying Cell Biology and Neuroscience.

Mr. John Abrams is the faculty sponsor for this submission. He is a Lecturer in the English Writing Program at Rutgers University.

References 21-49.Retrieved from http://www.springer.com/philosophy/epistemol ogy+and+philosophy+of+science/journal/ 11017 Hines, M., Brook, C., andConway, J.S. (2004). Androgen and psychosexual developtment: Core gender identity, sexual orientation, and recalled childhood role behavior in women and men with congenital adrenal hyperplasia (CAH).” Journal of Sex Research.

41(1), 75-81. Retrieved from: http://www.tandf.co.uk/journals/ titles/00224499.asp Karkazis, K. (2008). Fixing sex: Intersex, medical authority, and lived experience. Durham, North Carolina: Duke University Press.

Kim, K., Kwon, Y., Joung, J.Y., Kim, K.S., Ayala, A.G., & Ro, J.Y. (2002).

True hermaphroditism and mixed gonadal dysgenesis in young children: A clinicopathologic study of 10 cases. Modern Pathology, 15(10), 1013- 1019.

Lareau, A. C. (2003). Who decides? genital-normalizing surgery on intersexed infants. Georgetown University Law Journal, 92(1), 128-151.

Retrieved from http://georgetownlawjournal.org/ Money, J. (1965). Psychological evaluation of the child with intersex problems .Pediatrics, 31(6), 51-55. Retrieved from http://pediatrics. aappublications.org/ Sax, L. (2002). How common is intersex? a response to anne faustosterling. Journal of Sex Research,39(3), 174-178. Retrieved from http:// www.tandf.co.uk/journals/titles/00224499.asp Sloane, E. (2002). Biology of women. (4 ed.). Albany, NY: Thomson Learning.

Walker, J. (2004, May 24). The death of david reimer. Reason. Retrieved from http://reason.com/archives/2004/05/24/the-death-of-davidreimer Wickstrom, A., & Zeiler, K. (2009). Why do ‘we’ perform surgery on newborn intersexed children?: The phenomenology of the parental experience of having achild with intersex anatomies. Feminist Theory, 10(3), 359-377. Retrieved from http://fty. sagepub.com/

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Blackless, M., Charuvastra, A., Derryck, A., Fausto-Sterling, A., Lauzanne, K. and Lee, E. (2000), How sexually dimorphic are we? Review and synthesis. American Journal of Human Biology, 12: 151–166. doi: 10.1002/(SICI)1520- 6300(200003/04)12:2<151::AID-AJHB1>3.0.CO;2-F Chase, C. (2001, March 21). What is the agenda of the intersex patient advocacy movement? . Retrieved from http://www.isna.org/agenda Dreger, A. D. (2006). Intersex and human rights: The long view. In S. Sytsma (Ed.), Ethics and Intersex (pp. 73-86). Dordrecht, The Netherlands: Springer.

Ehrenreich, N., and Barr, M. (2005). Intersex surgery, female genital cutting, and the selective condemnation of “cultural practices” .

Harvard Civil Rights - Civil Liberties Law Review, 40(1), 72-139.

Retrieved from http://harvardcrcl.org/ Ford, K. (2001). “First, do no harm”:the fiction of legal parental consent to genital-normalizing surgery on intersexed infants. Yale Law and Policy Review, 19,.Retrieved from http://yalelawandpolicy.org/ Gold, C. (2001, March). The intersex spectrum. Retrieved from http:// www.pbs.org/wgbh/nova/body/intersex-spectrum.html Greenberg, J.A. (2006). International Legal Developments Protecting the Autonomy Rights of Sexual Minorities: Who Should Determine the Appropriate Treatment for an Intersex Infant? In S. Sytsma (Ed.), Ethics and Intersex (pp. 87-102). Dordrecht, The Netherlands: Springer.

Hermer, L. D. (2007). A moratorium on intersex surgeries? law, science, identity, and bioethics at the crossroads. Cardozo Journal of Law & Gender, 13(2), 255-272. Retrieved from http://www. cardozolawandgender.com/ Hester, J. D. (2006). Intersex and the rhetorics of healing. In S. Sytsma (Ed.), Ethics and Intersex (pp. 47-72). Dordrecht, The Netherlands: Springer.

Hester, J. D. (2004). Intersex(es) and informed consent: How physicians’ rhetoric constrains choice. Theoretical Medicine and Bioethics, 25,

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Presumed Consent: A Solution to the Organ Shortage

Presumed Consent: A Solution to the Organ Shortage Raquel MacGregor‡

One of the most imperative problems that the medical community faces is scarcity of resources. This includes doctors, vaccines, CAT scan machines, etc. Particularly, the dearth of viable transplantable organs has caused countless deaths nationwide. As of October 8, 2010 there were 117,925 people on the wait-list registry for organs in the United States (Caplan, 2010). Many of them will not survive long enough to receive an organ. The current system of opt-in consent, in which one designates oneself as an organ donor, has numerous barriers that intrinsically prevent citizens from registering. There have been multiple proposed methods of combating the problem, from incentives for donation, to paired organ exchanges, to changing the system the presumed consent. Particularly, the strategy of presumed consent has been employed with much success in a number of countries. As the federal government has an obligation to protect life, it should therefore make it a priority to lessen the disparity between supply and demand of organs. In response to the increasing organ shortage, switching to a system of presumed consent would be the most logical and ethical method to increase the availability of organs while maintaining the public’s ideal of altruism.

The Current Organ Shortage

The American System and Its Flaws

‡ University of Pennsylvania, mraquel@sas.upenn.edu

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Currently, the system in place functions under the opt-in concept in which people designate themselves as organ donors either through a donor card registry managed by the state or on their driver’s license. If a person dies without record of his or her preferences, then the next-of-kin are given the power to decide. If no decision is reached by the next-of-kin, the individual is assumed to not be a consenting candidate for organ donation. Despite post-mortem preferences designated on donor registry cards or driver’s licenses, many who are

Penn Bioethics Journal

One of the greatest problems that the medical community faces is the scarcity of resources, which include doctors, vaccines, CAT scan machines, etc. In particular, the lack of viable transplantable organs has caused countless deaths nationwide. As of October 8, 2010 there were 117,925 people on the wait-list registry for organs in the United States (Caplan, 2010). Many of them will not survive long enough to receive an organ; each day eighteen people on the organ transplant list die (U.S. Department of Health and Human Services, 2012). This in mind, numerous ethical dilemmas surround the arena of organ donation. Who gets priority to receive organs?

Who donates? Who has the right to decide? Suggestions to policy changes aimed at reducing the organ gap are often met with hostility and skepticism. In 1984, the National Organ Transplantation Act (NOTA) was passed in order to create a national organ registry system and transplantation network (Harris et al., 2001). However, in the last several decades, little has changed with regards to the fundamental policies of organ donation in the United States.

registered as organ donors do not actually donate their organs upon brain death. Sometimes licenses cannot be identified and next-of-kin come to a different decision from what the patient would have made. Other times, the extended family is simply uninformed about the wishes of their loved one.

Furthermore, many times healthy organs are wasted because licenses cannot always be found in the short time in which organs are viable. For example, Zoe Cansdale was a healthy 24 year old woman killed in a motor vehicle accident in September of 1998. Despite her wish to donate her organs upon death, she was not able to do so. Due to system inefficiencies, too many hours elapsed between her death and when the hospital could locate her parents in order to receive consent for donation. Because consent could not be confirmed in time, Zoe’s organs could not be harvested.

Her parents stated with conviction that Zoe would have wanted to save as many people as she could, but the delay and disorganization of the system prevented that from occurring (Cansdale & Cansdale, 1999). This example illustrates just one of the numerous failures caused by the inefficiencies of the current system.

Among other concerns with the current organ procurement system is the lack of public education about it. When people renew their licenses at Division of Motor Vehicles offices, frequently there is no information available regarding organ donation to guide their decision. Furthermore, people often decide not to register because of misconceptions about the process. Some think that their end-of-life care will be compromised if they elect to become organ donors. However, no data has supported this claim; people forget that the duty of a physician is first and foremost to his patient. According to standards of practice, “To avoid obvious conflicts of interest,

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Article neither the surgeon who recovers the organs nor any other personnel involved in transplantation can participate in end-of-life care or the declaration of death” (Steinbrook, 2007).

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Potential Solutions to the Issue Numerous ideas have been proposed to combat organ scarcity. Monetary incentives for donation, transplant priority for donors, paired organ exchanges, and tax breaks have all been suggested. The idea of monetary incentives has received bitter disapproval. Organ donation is thought to be a purely altruistic act that should not be motivated by financial reasons. Also, the exploitation of poor populations by the black market trade for organs, specifically in Brazil, India, and China, adds to the ethical dilemma (Hudson, 2008). At what point may a monetary reward be coercive?

To address this question, the National Transplantation Act in 1984 outlawed “monetary transactions related to the acquisition of organs for transplantation” ( Joralemon, 2001).

Although paired organ exchanges and transplant priority for donors could aid the system, these solutions can only be utilized by a select population in need of organs.

Paired organ exchanges are limited to organs provided by living donors, which prevents the transplantation of many tissues such as heart valves and corneas. In addition, organ exchanges require an additional living donor that does not receive any benefit from donating their organs. Thus, organ exchange rates can only exist on a miniscule scale, nowhere near filling the demand for organs. Therefore, the system needs a revolutionary approach to the acquisition of organs.

The third commonly debated recommendation is to change the system from voluntary consent to presumed consent, making the process opt-out as opposed to optin. Under this system, individuals would automatically be assumed organ donors unless they have specifically indicated that they wish to not participate in this system. Essentially, the opt-out system acts on the opposite assumptions of the opt-in system that is currently place. Proponents of the opt-out system offer relevant stipulations, including the barring of decision making by the next-of-kin and the establishment of a national organ registry (Stratz, 2006).

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Assessing Presumed Consent

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The implementation of the opt-out system should be assessed on three criteria: effective supply of organs, respect for the general consensus, respect ethical and religious beliefs. The first question can be addressed by asking how much the supply of organs would actually increase under presumed consent. Although this is difficult to predict, the analysis of similar countries which have adopted presumed consent may give an educated prediction. According to a Harvard University study comparing organ donation rates in countries with presumed consent versus those without, “cadaveric donation rates are 25% to 30% higher on average in presumed consent countries” (Abadie & Gay, 2005).

Furthermore, the researchers hypothesized that donation

rates could be even more impressive if doctors and patients strictly adhered to the system. In the countries studied, doctors sometimes ask for family approval before harvesting organs. This occurs even though the law does not make it a prerequisite. Thus, organ donation rates may not have reached their maximum potential in the studied nations.

By simply changing the manner in which organ donation is viewed and implemented in the United States to the method of presumed consent, there can be a significant increase in donors.

The next criteria for analysis that shall be explored is whether presumed consent upholds the majority population’s wishes. Many question the assumption that most Americans would want to be donors considering that organ donation rates are so low. While it is true that many states’ organ registries do not indicate that a majority of its citizens wish to be donors, this fact does not represent the beliefs of the population. New York, for example, is among the lowest in its rate of registered organ donors. A mere 13% of its citizens are registered as donors, three times below the national average (Caplan, Healy, Satel, Berg, and Baly, 2010). However, a survey of 5,100 United States adults performed by Astellas Pharma US and Donate Life America found that 72% of Americans wanted to donate their organs after death (U.S. News Health, 2009). Clearly there is a flaw in the current system that prevents citizens from implementing their wishes. Moreover, as much as 90% of Americans support organ donation according to the Organ Donor Network and a number of national surveys ( Joralemon, 2001). Thus, altering the system to presumed consent may actually more accurately uphold the public’s beliefs.

The third assessment to be addressed, the ethics of presumed consent, is the most frequently discussed aspect of the debate. Some worry that presumed consent violates religious practices and beliefs. However, this is not true for the vast majority of the population. The Michigan Department of State writes, “All major religions throughout the world support organ and tissue donation as a humanitarian act of giving. Transplantation is consistent with the life-preserving traditions of these faiths” (Michigan, 2010). However, there is a percentage of the Jewish population that objects to organ donation.

Within Judaism, there are conflicting beliefs related to the treatment of corpses and the concept of brain death. There is a mitzvah that a body should not be consecrated after death. However, it is more often accepted that pikuach nefesh, or saving a life, should take precedent over other statutes (Konig, 2003). Yet, the religious objections that make up the largest percentage of the United States population are Shintos and Jehovah’s Witnesses (Scottish Government, Undated). However, considering their relatively small presence within the larger scope of the United States as well as the ability to opt-out of the system, their religious objections are not significant enough to counter the implementation of an opt-out system.

When addressing the morality of presumed consent,

Presumed Consent: A Solution to the Organ Shortage the exploitation of uninformed and vulnerable populations is important to consider. For the system to function ethically, comprehensive measures would be needed to protect the individual’s rights and liberties. Citizens would not be abused if they were adequately educated about their right to opt-out.

An opt-out option would therefore need to be easily accessible for all and extensive education about one’s rights to opt-out would be a necessity. Elaine Berg, president and CEO of New York Organ Donor Network, stresses the importance of targeting education efforts to rural and low-income areas as well as multilingual communities (Caplan et al., 2010). Lack of access to the media in certain populations is a key concern.

Thus, a nationwide campaign to educate people about their options, as implemented in the presumed consent system in Belgium, could resolve this issue (Stratz, 2006). In addition, measures to protect the mentally impaired would need to be considered. This issue can be partially addressed by following France’s model of legislation in which qualifying citizens receive counseling from their legal representative to aid in the organ-donating decision (Stratz, 2006).

Ultimately, the ability to opt out allows the system to not infringe on anyone’s will. Moreover, a system of presumed consent, in which next-of-kin are exempt from the decisionmaking process, more precisely follows the wishes of the individual whose organs are being harvested. As Singapore’s assumed consent legislation states: “People are… better able to ensure their wishes are followed because their and not their next of kin’s acceptance or objection has to be respected” (Stratz, 2006). Presumed consent will not allow the harvesting of organs from someone who has expressed their disapproval of the system. Consequently, presumed consent is not in violation of the ideals of the nation. In fact, it more closely follows the wishes of each individual.

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Belgium, like many other countries in Europe and Asia, has adopted the presumed consent model with success. Belgium has developed an expansive informational campaign about organ transplantation throughout its country to educate people about their options and rights. Doctors are also encouraged to talk to their patients about their options and end of life care, in contrast with doctors in the United States, whom are not trained to speak about these issues with their patients (Stratz, 2006). The Leuven transplant center in Belgium, which adopted the new methods for organ procurement under presumed consent, saw an increase from 15 to 40 donors per year while neighboring Antwerp transplant center, which did not accept the new law modification, saw their organ donation rate remain constant (Stratz, 2006). Moreover, a Roels and De Meester study comparing organ recovery throughout multiple transplant centers in Belgium found a drastic increase in the average number of kidney transplants before and after the introduction of the presumed consent law in 1986. In the four years prior to the law, there were an average of 18.9 kidney donors per million population, whereas within a single year after legislation was passed, there was 37.5 kidney donors per million population in 1987 (Rithala et al., 2009). An increase

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Models of Presumed Consent

of even a fraction of this magnitude would be monumental in the face of the shortage of organs within the United States.

Like Belgium, the French senate passed the Caillavet Law in December of 1976, in essence passing its own version of presumed consent. The first clause states that, “An organ… may be removed from the cadaver of a person who has not during his lifetime made known his refusal of such a procedure. If, however, the cadaver is that of a minor or a mentally defective person, organ removal for transplantation must be authorized by his legal representative” (Stratz, 2006). In addition, the law clarifies that next-of-kin has no veto power (Farfor 1977). The Council of State in France was given the power to implement the law. This Council stated that any person could refuse to be a donor, and a hospital was mandated to record these wishes into a registry and check the registry before organ harvest. The state also allows for anyone who knew the wishes of a person to register them as well (Stratz, 2006). This naturally led to the issue of false listing by family members who did not agree with the wishes of their relatives at the time of death. Thus in 1978, the Ministry of Health and Social Security further tightened the Caillavet Law by stating that direct organ donation refusal by the individual in question is needed to add a person to the registry (Stratz, 2006). Since France lacked a standardized nation-wide organ registry at the time, a non-donor national registry that could monitor the preferences of all individuals was soon created (Stratz, 2006). This type of registry could increase efficiency in the organ-harvesting period since doctors do not have to track down donor preferences from a variety of sources. From the Caillavet Law it can be learned that direct choice from the individuals themselves is a necessity, and moreover, a national online registry is essential.

As a final example, Spain is repeatedly cited as a country with one of the most successful application of presumed consent in the world. Spain created an organization called the Organización Nacional de Transplantes, commonly referred to as ONT. The ONT has earned a reputation for efficiency in talking with families of deceased relatives about the possibility of organ donation. Their primary goal is to educate the public and increase the rate of organ donation. With 193 stations throughout Spain, the prompt service and widespread coverage has surpassed all expectations. From a study that followed 200 families that first objected to donation of organs from their loved ones, 78% ended up consenting after receiving an explanation and talking with the organization’s representatives (Stratz, 2006). A key factor to note in Spain’s system is the aspect of next-of-kin override, which, as opposed to France’s, has not been dismissed.

The success of organ procurement in the Spanish system has been remarkable. To avoid accusations of coercion, this task force undergoes close regulation and ensures the public that citizens are not being pressured into their decisions. Overall, increasing the wealth of knowledge within a population through informational campaigns like those spearheaded by the ONT may address this issue of uninformed populations without adding personal pressure to grieving families.

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Implementing Presumed Consent in the United States

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As states have begun adopting abbreviated aspects of presumed consent into state law, the possibility of a national change to presumed consent emerges. Citizens may reject the idea of presumed consent on the grounds of overreaching paternalism. With European countries as a guide, many states have begun to enact regional laws regarding presumed consent. New York assemblyman Richard Brodsky has recently proposed a bill to make New York the first state to operate by presumed consent. The bill contains two critical aspects, including the inability to challenge by next-of-kin as well as an opt-out registry (Caplan et al., 2010).

Other states similarly have been enacting comparable laws to assume consent in difficult situations. Virginia, Idaho, Utah, and South Dakota have passed legislation ruling that if an individual is listed as an organ donor, the surviving family cannot override that decision. The laws also dictate that organ donation preferences trump advanced directives. Similar laws are currently awaiting signatures in more than twenty-two states, which indicates increasing attention nationwide toward addressing the flaws of the current organ donation system (Stein, 2007). Since these laws are encouraging Americans to support increased donations and make assumptions about patient preferences, perhaps presumed consent is not an unattainable concept.

If presumed consent is employed in the United States, the system would need specific state regulation and enforcement.

Based on the failures and successes of the program in France, it can be seen that a federal level online opt-out database would be necessary. A large educational campaign would also be needed to disseminate options and knowledge of the system to all populations. This would prevent inequalities within communities without access to education about end-of-life

options. The system would also need to clarify the decisionmaking role of the next-of-kin. Ultimately the decision to donate should be made by the individual and not the family.

Thus, the French model, with its lack of next-of-kin lack of override, would perhaps be the most ethically justifiable means for conserving the wishes of the individual.

The future of organ donation in the United States is clouded with uncertainty. While European and Asian countries consistently show dramatic increases of organ supply through presumed consent, the United States is unlikely do adopt such a method any time in the near future. Many foreign health care systems are nationalized and focus on the benefit to collective society, but the United States prides itself with a free health care market and an emphasis on the individual. The emphasis on individual freedom and fear of infringing on citizens rights may cause United States citizens to immediately discount an organ procurement system that assumes an individualâ&#x20AC;&#x2122;s preferences. Thus in the United States, more so than in other countries, presumed consent may face a greater number of barriers before achieving public approval.

The general public must shift its thinking and be made more aware of the issues surrounding organ transplantation and the organ deficiency.

About the Author Raquel MacGregor is an undergraduate at the University of Pennsylvania, where she is studying International Relations.

Ms. Rachel Zurow is the faculty sponsor for this submission. She was formerly a Visiting Professor in the Department of the History and Sociology of Science at the University of Pennsylvania. She is currently a practicing attorney.

Presumed Consent: A Solution to the Organ Shortage References Abadie, A., & Gay, S. (2005, December). The Impact of Presumed Consent Legislation on Cadaveric Organ Donation: A Cross Country Study.

Retrieved November, 4, 2010, from Harvard University, Faculty Research Working Paper Series, from http://www.hks.harvard.edu/fs/aabadie/ pconsent.pdf Caplan, A. (2010). Going to the Extreme. Northern Ireland Bioethical Forum. 3(2), 30-31.

Caplan, A, Healy, K., Satel, S., Berg, E., & Baily, M. A. (2010, May 2).

Should Laws Push for Organ Donation? The New York Times. Retrieved November 2, 2010, from http://roomfordebate.blogs.nytimes. com/2010/05/02/should-laws-encourage-organ-donation/ Cansdale, S. & Cansdale, R. (1999, May 29). Presumed Consent: We Know Our Daughter Lives On. British Medical Journal, 318, 1490-1491. Pew Forum on Religion & Public Life, Religious Landscape Survey. (2010).

Statistics on Religion in America Report. Retrieved December, 10, 2010, from http://religions.pewforum.org/reports Farfor, J. A. (1977). Organs for Transplant: Courageous Legislation. British Medical Journal. 1.6059, 497-498.

Harris, C. E., & Alcorn, S. P. (2000). To Solve a Deadly Shortage: Economic Incentives for Human Organ Donation. Issues in Law & Medicine, 16(3).

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Hudson, K. A. (2008). Globalization And The Black Market Organ Trade: When Even A Kidney Canâ&#x20AC;&#x2122;t Pay The Bills. Disability Studies Quarterly, Abstract retrieved December 8, 2010, from Ohio State University, http:// www.dsq-sds.org/article/view/143/143 Joralemon, D. (2001). Shifting Ethics: Debating the Incentive Question in Organ Transplantation. Journal of Medical Ethics, 27. 30-35.

Konig, S. (2003, February 9). An Organ Donor Campaign Targets Jews. The New York Times. Retrieved March 17, 2012, from http://www.nytimes. com/2003/02/09/nyregion/an-organ-donor-campaign-targets-jews.

html?pagewanted=all&src=pm Matthews, C, & Bureau, G. A. (2010, June 29). Organ Donation: An Optout Policy?â&#x20AC;? USA Today. Retrieved December 6, 2010, from http://www. usatoday.com/news/health/2010-06-29-organ-donors_N.htm Michigan Department of State. (2010). Are There Religious Objections to Donation? Retrieved December, 10, 2010, from http://www.michigan. gov/sos/0,1607,7-127-29843-152075--F,00.html The Scottish Government. (2010). Organ Donation Teaching Resource Pack. Retrieved December 3, 2010, from http://www.scotland.gov.uk/ Publications/2003/11/18095/25895 Rithala, A., McDaid, C., Suekarran, S., Norman, G., Myers, L., & Sowden, A. (2009). A systematic review of presumed consent systems for deceased organ donation. Health Technology Assessment, 13(26), 22-23.

Stein, R. (2007, April 4). States Revising Organ-Donation Law. The Washington Post. Retrieved November 4, 2010, from http://www.washingtonpost.com/wpdyn/content/article/2007/04/03/AR2007040302062.html Steinbrook, R. (2007, July 19). Organ donation after Cardiac Death. The New England Journal of Medicine. Retrieved December 29, 2011, from http://www.nejm.org/doi/full/10.1056/NEJMp078066 Stratz, S.A. (2006). Finding the Winning Combination: How Blending Organ Procurement Systems Used Internationally Can Reduce the Organ Shortage. Vanderbilt Journal of Transnational Law. U.S. Department of Health & Human Services. (2012). The Need is Real.

Organdonor.gov. Retrieved March17, 2012, from http://www.organdonor.gov/index.html U.S. News Health Day. (2009, April 16). Survey Shows Many Want to Donate Organs, but Few Do. U.S. News & World Reports. Retrieved March 16, 2012, from http://health.usnews.com/health-news/managing-yourhealthcare/articles/2009/04/16/survey-shows-many-want-to-donateorgans-but-few-do

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