Princeton Journal of Bioethics - 2007 by Princeton Journal of Bioethics

Volume IX 2007

PJB Princeton Journal of Bioethics

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

The Princeton Journal of Bioethics Anuj Nadadur ‘07 Editor-in-Chief Rachel Rizal ‘09 Editor-in-Chief Vinay Shah ‘09 Executive Editor Tashfin Huq ‘09 Editorial Staff Paul Ginart ‘10 Editorial Staff Preethi Ramchand ‘07 Editorial Staff

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

Katherine Benesch, J.D., MPH Partner, Duane Morris LLP, Princeton, NJ Peter Singer Professor of Philosophy and Faculty of the Center for Human Values, Princeton University Xenia Morin Lecturer, Princeton Writing Program, Princeton University Irene A. Jillson Assistant Professor, School of Nursing and Health Studies, Georgetown University

The Princeton Journal of Bioethics

Foreword On behalf of the staff of the Princeton Journal of Bioethics, we are pleased to present you with the ninth issue of the Journal. The articles we have selected for this issue discuss a diverse set of topics, including: the prospect of genetic enhancement in athletics, legal dilemmas surrounding cryopreserved embryos, patients’ responsibility for their own health, physician assisted suicide, and a Rawlsian perspective on genetic modification. We hope that you find these issues stimulating as well as representative of the wide field of bioethics. The articles included in the Journal are first submitted by undergraduate students from around the country to the Princeton Journal of Bioethics Editorial Board. The Board then edits, compiles, and publishes this work. As our fine tradition of publishing the best undergraduate work in bioethics depends on student submissions, we encourage you to send us papers relevant to bioethical issues so that we may consider them for upcoming issues of the Journal. We could not have published the Journal without the guidance of our Technical Review Board. These prominent experts ensure the accuracy and quality of our publication. We would also like to thank Princeton’s departments of Molecular Biology and Philosophy as well as the University Center for Human Values. Their generous support helped make this year’s publication possible. Thank you for your continued support and interest in the Princeton Journal of Bioethics. We hope that the Journal provides you with new perspectives and material to ponder, debate, and discuss. It is only through sustained dialogue and awareness that progress in bioethics can be made, and we invite you to become an active participant in this exciting and rapidly growing field. Sincerely, Anuj Nadadur ‘07 Editor-in-Chief

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Vol. IX 2007

The Princeton Journal of Bioethics

The Princeton Journal of Bioethics Volume IX, 2007

Contents

Foreword

Anuj Nadadur â&#x20AC;&#x2DC;07 Princeton University Genetic Enhancement and Athletes Evan Graboyes Princeton University

Cryopreserved Embryos: What should be done

when marital relations chill

Alix Rogers University of Pennsylvania

The First Wealth - Health As A Duty To Oneself Jason Shen Stanford University

Socioeconomic Privilege and Physician Assisted Suicide: A New Perspective Shira Billet Princeton University

Rigging the Natural Lottery: Questions of Genetic Modification and Rawlsian Justice Christopher Simpson Stanford University

The Differences between Medical and Behavioral Genetics Molly Rapoport Danielle Gong Morgan Goheen Princeton University

Vol. IX 2007

The Princeton Journal of Bioethics

Vol. IX 2007

The articles herein do not reflect the views of the Princeton Journal of Bioethics or its affiliates.

The Princeton Journal of Bioethics

Genetic Enhancement and Athletes Evan Graboyes Princeton University

The moral unease surrounding genetic enhancement in athletics manifests itself in the World Anti-Doping Agency (WADA) Anti-Doping Code, which has prohibited genetic enhancement as a form of doping since 2003. In its current form, an athlete under WADA’s jurisdiction who sought genetic enhancement would be cheating. This paper will address an associated question, examining what rules should govern genetic enhancement in athletics. Is the ban on genetic enhancement arbitrary, a mere convention like a nine inning baseball game, or the result of ethical arguments? Is there a principled basis for a regulatory sporting agency to ban a competent, adult athlete from undergoing somatic cell genetic enhancement? To answer these questions, this paper will examine the most frequently proffered ethical arguments for the impermissibility of genetic enhancement, in section II, concluding that none withstand rigorous analytical and philosophical scrutiny. In addition to banning genetic enhancement in sport on general moral precepts, there are additional arguments that justify banning genetic enhancement for athletes because it is inconsistent with the spirit of sport, a claim section III will analyze. Section III will thus adjudicate between three conceptions of the nature of sport and argue that the most plausible conception of sport recognizes two essential features of sport: 1) excellent physical performance as the athlete displays the grace and beauty of the human form in action and 2) the seamless fusion of body and mind as the athlete engages in the distinctively human activity of exercising autonomy in pursuit of this aesthetically pleasing result. Given this conception, it will contend that regulatory agencies cannot justify banning genetic enhancement on the grounds that it violates the spirit of sport. Despite the failure of any ethical or spirit of sport arguments to justify a ban on genetic enhancement, section IV will provide a justification for a ban on genetic enhancement at the current time, arguing that it should be impermissible because of its potential health risks. Finally, section V will provide some concluding remarks. I. INTRODUCTION Although we typically applaud athletes who seek enhancement as they strive to excel through the use of a novel training method, technique, or piece of equipment, there is a presumption that enhancement via “artificial” substances, or “doping” is impermissible behavior for athletes. Despite this general ethical unease, a significant number of athletes turn to illicit substances as they search for a competitive advantage over their opponents. When genetic enhancement becomes feasible, perhaps as soon as the 2008 Olympics, athletes will no doubt employ this means of enhancement as well.1 The moral unease surrounding this issue manifests itself in the World Anti-Doping Agency (WADA) Anti-Doping Code, which has prohibited genetic enhancement as a form of doping since 2003.2 In its current form, an athlete under WADA’s jurisdiction who 1 Adams David. “Gene therapy may be up to speed for cheats at 2008 Olympics.” Nature 414 (2001): 569. 2 World Anti-Doping Agency. World Anti-Doping Code. Montreal: World Anti1

Vol. IX 2007 sought genetic enhancement would be cheating. This paper will address an associated question, examining what rules should govern genetic enhancement in athletics. Is the ban on genetic enhancement arbitrary, a mere convention like a nine inning baseball game, or the result of ethical arguments? Is there a principled basis for a regulatory sporting agency to ban a competent, adult athlete from undergoing somatic cell genetic enhancement? To answer these questions, this paper will examine the most frequently proffered ethical arguments for the impermissibility of genetic enhancement, in section II, concluding that none withstand rigorous analytical and philosophical scrutiny. In addition to banning genetic enhancement in sport on general moral precepts, there are additional arguments that justify banning genetic enhancement for athletes because it is inconsistent with the spirit of sport, a claim section III will analyze. Section III will thus adjudicate between three conceptions of the nature of sport and argue that the most plausible conception of sport recognizes two essential features of sport: 1) excellent physical performance as the athlete displays the grace and beauty of the human form in action and 2) the seamless fusion of body and mind as the athlete engages in the distinctively human activity of exercising autonomy in pursuit of this aesthetically pleasing result. Given this conception, it will contend that regulatory agencies cannot justify banning genetic enhancement on the grounds that it violates the spirit of sport. Despite the failure of any ethical or spirit of sport arguments to justify a ban on genetic enhancement, section IV will provide a justification for a ban on genetic enhancement at the current time, arguing that it should be impermissible because of its potential health risks. Finally, section V will provide some concluding remarks. II. ETHICAL ISSUES IN GENETIC ENHANCEMENT Setting aside the perhaps insuperable (at least at the current time) scientific obstacles to performing genetic enhancement and enforcing a prohibition of it, this section will investigate the ethical arguments against the use of genetic enhancement. If it is morally objectionable for athletes to seek genetic enhancement, then regulatory agencies should certainly prohibit it. Different authors and regulatory commissions have advocated different objections to the use of genetic enhancement by athletes, but the most common arguments state that we should prohibit genetic enhancement because it is: 1) Unfair to the other participating athletes 2) Coercive to the athlete and deprives him of his autonomy 3) Expresses a disposition of willfulness and hubris 4) Unnatural 5) Diminishes the dignity of human activity 1) Unfair One objection to genetic enhancement is that it violates norms of justice or fairness. This objection fails to justify a prohibition of genetic enhancement because there are a number of facets of sports that contravene notions of fairness and equality that regulators condone by permitting. To prohibit genetic enhancement on the grounds that it is unfair while pardoning other forms of inequality is therefore arbitrary. First, sports are not fair in the sense that athletes succeed in large part because they were winners of a genetic lottery at birth. As Dr. Per-Olaf Astrand, a physiology Doping Agency, 2003. 16. 2

The Princeton Journal of Bioethics professor in Sweden once quipped, “To become an Olympian, choose your parents well.”3 Sport has always been the province of the genetic elite and discriminated against the genetically unfit, and fans and athletes have either reconciled themselves to this fact or simply do not care. For example, Ereo Maentyranta, the Finnish cross-country skier who garnered three gold medals in 1964 possessed a natural mutation in his erythropoietin (EPO) receptor that caused him to have 40% more red blood cells than average.4 EPO is a protein produced predominantly in the kidney. It has been central to performanceenhancement for many athletes because of its role in modulating blood oxygenation capacity and increasing the availability of oxygen to tissues during exercise, fundamental factors in optimizing muscular activity and augmenting performance in endurance sports. Doping to enhance EPO levels is prohibited, yet simply because Maentyranta’s excessive EPO levels resulted from a genetic mishap they were permissible, conferring upon him a competitive advantage over the other skiers. It hardly seems that his high EPO levels are any more just than the EPO levels of someone who is genetically enhanced. As the bioethicist Michael Josephson explains, “There’s something to the idea that you’re competing the way you were born and you’re pure- we like that. But think about it: Aren’t there always inherent advantages?”5 In reality, permitting genetic enhancement will actually promote equality and justice as it homogenizes the genetic playing field and removes the inherent effects of genetic inequalities. It is not genetic enhancement that is unfair, but nature. Although we may have reconciled ourselves to the fact that athletes are “winners” in the “genetic lottery,” it is arbitrary to argue that genetic enhancement should be banned because it is unfair and permit unfair natural genetic inequalities without the further normative premise that what is natural is inherently valuable: a premise that part four of this section will show is exceedingly difficult to justify. Second, sports are not fair in the sense that athletes in wealthier countries have access to training equipment, facilities, and coaches that competitors in poorer countries do not have. Objecting to genetic enhancement on the grounds that it will exacerbate existing inequalities because only a few will have access to the treatment fails to distinguish it from any other sort of competitive advantage that the rich currently possess. “The idea of a level playing field is naïve,” writes Josephson.6 Why, he asks, is genetic enhancement “more unfair than someone who has a personal trainer or had private lessons from a very early age? What bothers me is this: Do you think you can ban this and you’ve suddenly made sports fair?”7 This argument also makes no substantive moral claims about the moral status of genetic enhancement itself; it is a social justice argument against the allocation scheme for genetic enhancement. As Harvard philosopher and the President’s Council on Bioethics (PCOB) member Michael Sandel astutely explains, “The fundamental question is not how to ensure equal access to enhancement, but whether we should aspire to it in the first place.” 3 Patel, Dilip and Donald Graydanus. “Genes and Athletes.” Adolescent Medicine 13.2 (2002): 249. 4 Savulescu, J. et al. “Why we should allow performance enhancing drugs in sport. British Journal of Sports Medicine 38 (2004): 667. 5 Maese, Rick. “Gene Therapy’s impact on sports worries experts.” Orlando Sentinel 22 May 2005: A1+. 6 Maese A1. 7 Maese A1. 3

Vol. IX 2007 The above arguments have shown that many practices that are currently permissible demonstrate that sport is unjust from both a genetic and distributive justice perspective, and therefore proscribing genetic enhancement on the grounds of lack of fairness seems arbitrary. As Sandel concludes, “If genetic enhancement in sports is morally objectionable, it must be for reasons other than fairness.”8 2) Coercive Another objection to genetic enhancement is that it is coercive. If regulatory agencies were to permit genetic enhancement, it would instigate an arms race amongst athletes, as everyone would be forced to undergo genetic enhancement simply to keep up and remain competitive. Athletes might perceive not seeking genetic enhancement as a form of “unilateral disarmament,” practically guaranteeing the success of those individuals who choose to enhance and the failure of those who choose not to enhance.9 Although this argument is sound, it begs the question about the moral status of genetic enhancement. An arms race already exists in sports today, and for an athlete to remain competitive, one could assert that he has no choice but to engage in morally innocuous activities such as eating properly, lifting weights, or studying film. Simply because one athlete’s weightlifting in a sense forces other athletes to lift weights to remain competitive is not to say that there is something inherently wrong with the activity of weightlifting or that weightlifting itself is immoral or impermissible. Analogously, to argue that genetic enhancement is wrong because it will induce an arms race therefore fails to address the question of whether or not there is anything intrinsically problematic about genetic enhancement per se. Just as the argument in the previous section that sought to justify banning genetic enhancement on grounds that it would exacerbate existing social injustices is not actually an argument against genetic enhancement, so too does simply pointing out genetic enhancement’s potentially coercive effects not constitute a reason to ban it. Genetic enhancement might be bad or it might be good, but simply pointing to its potentially coercive effects provides no guidance in helping us resolve this question. What we need to do is ascertain whether genetic enhancement is a valuable practice or not before we can ask whether it being coercive represents a problem. If we discover that genetic enhancement is intrinsically morally problematic, then its coercive nature represents a problem. If on the other hand we discover that it is not intrinsically problematic, then we should treat its coercive effects as we do those of lifting weights. There are reasons to think that genetic enhancement is at least intrinsically valuable. It is true that some athletic competitions such as track races are zero-sum games such that one athlete’s gain necessarily occurs at the diminished statue of another. Each race will only have one winner, and genetic enhancement will not change the fact. If instrumental utility is evaluated against this goal, genetic enhancement is of little instrumental value. At the same time, athletes are also evaluated against objective measures that are not zero-sum outcomes. Marathoners not only run against each other, they run against a clock. Athletes do not only compete against their competitors, they compete against themselves, striving to excel for the sake of excellence. What genetic enhancement will change is the speed at which the athletes run the race. Genetic enhancement, 8 Sandel, Michael. “The Case Against Perfection.” Atlantic Monthly Apr. 2004: 52. 9 United States. The President’s Council on Bioethics. Beyond Therapy: Biotechnology and the Pursuit of Happiness. Washington DC: The President’s Council on Bioethics, 2003 U.S. Council of Bioethics. 120. 4

The Princeton Journal of Bioethics like lifting weights or studying film, is instrumentally valuable when judged against objective metrics because it facilitates a higher quality of sport in general and allows athletes to surpass their previous athletic exploits. If genetic enhancement is valuable in this sense, then the ensuing arms race would in fact be an ancillary benefit for two reasons. First, the “coercion” would improve the overall quality of sport as athletes competed at superior levels. Second, each athlete would be “coerced” into partaking of this valuable practice and would improve against both objective measures and against internal measures, besting his previous performances. If we apply the argument that we should ban all methods of augmenting performance that are potentially coercive to another context, we can immediately discern the argument’s fallacious nature. For example, does the coercive potential of lifting weights cause us to accept the conclusion that lifting weights is intrinsically troubling? The answer, of course, is no. This putative conclusion strikes us as absurd because there exists an error in the form of the argument, namely, it presupposes the moral impermissibility of the act in question to arrive at its conclusion. Genetic enhancement will certainly be another tool in the training regimen of athletes and provide a competitive edge to those who use it, but the argument that genetic enhancement is wrong because it is coercive assumes the truth of the wrongness of genetic enhancement to establish its conclusion. To simply point out that it will induce an arms race is therefore by itself no reason to prohibit genetic enhancement in sports. 3) Disposition of Willfulness Sandel argues that what is fundamentally wrong with genetic enhancement is not the perfection it seeks, but the “hubris” and the “human disposition it expresses and promotes:” one of “Promethean aspirations,” “hyperagency,” “an ethic of willfulness,” and “a drive to mastery.”10 This disposition is objectionable because it prevents humans from recognizing the “giftedness of life,” and embracing the humility that accompanies the realization that “our talents and powers are not wholly of our own doing.”11 Once we become masters of our own genetic endowments and refuse to accept the giftedness of life, we will be left “with nothing to affirm or behold outside our own will.”12 Furthermore, genetic enhancement augments responsibility, Sandel argues, which is objectionable because it prevents us from sharing our fate with others.13 Accepting the giftedness of life is therefore valuable because it fosters solidarity between men.14 Recognizing that our lot is a result of chance engenders us to develop moral sentiments and pool our risks and resources as we share one another’s fate. Doing away with the notion of giftedness would undermine any of society’s obligations to the less privileged and hasten our society’s descent from a meritocratic society because of the smug assumption that the rich are rich because they earned their success.15 There are a number of deficiencies inherent in the argument that genetic enhancement is wrong because of the disposition of hubris that it expresses. First, this pernicious desire for mastery does not entail, as Sandel proposes, that we will be left “with 10 11 12 13 14 15

Sandel 54-57. Sandel 54. Sandel 62. Sandel 60. Sandel 60. Sandel 60. 5

Vol. IX 2007 nothing to affirm or behold outside our own will.”16 Sandel fails to differentiate between the two ways in which one can desire mastery: as instrumentally valuable (as a means) or as intrinsically valuable (an end in itself). In either case, his conclusion does not follow from his premise. As Harvard philosopher Frances Kamm explains, if the desire for mastery that Sandel objects to is the desire as a means to an end, then we retain other values because we affirm the desired end as well.17 Even if the desire for mastery is affirmed as an end in itself, it does not preclude the pursuit of other ends as well. One need not posit the existence of only one source of value, and holding that desiring mastery is intrinsically valuable is not to deny that health, pleasure, wisdom, or any other number of goods are also intrinsically valuable. Whether we desire mastery as instrumentally or intrinsically valuable, it does not deprive humans of valuing all other goods except our willfulness as Sandel asserts. Second, Sandel’s example of parenting to elucidate what it means to accept the “giftedness of life” and “the unbidden” fails to support his conclusion that all genetic enhancement is impermissible. He acknowledges that parents have an obligation to help mold their children, but argues that to accept the giftedness of life is to strike an appropriate balance between accepting and transforming love.18 The drive to mastery has caused parents to forget this equilibrium, placing too much emphasis on transforming love as they hyperparenting represents “an anxious excess of mastery and dominion that misses the sense of life as a gift.”19 If not manifesting too much transforming love is all that accepting the giftedness of life requires, then an athlete who seeks modest genetic enhancement acts in accordance with accepting life as a gift, a conclusion Sandel would presumably not endorse. Arguing that genetic enhancement is wrong because it fails to attend to the giftedness of life therefore does not provide a reason for an athlete not to seek minor genetic enhancement, only major genetic enhancement. Furthermore, Sandel’s injunction to maintain an appropriate balance is irrelevant in the domain of athletics. As a report by the PCOB concludes, “all human excellence, to some degree, requires at least some distortion: putting aside many activities or aspirations to excel in one.”20 Excellence in sports requires athletes to set aside some aspirations to pursue others, can only be excellent in a few things, not everything. An athlete has no need to observe the delicate balance between transforming and accepting himself because to be an athlete is to strive to transform continuously. Third, it is difficult for Sandel to retain his approbation of medical intervention while concurrently grounding his disapproval of genetic enhancement on the grounds that only the latter expresses a desire for mastery and a refusal to accept life as a gift. He recognizes that his account appears to condone passivity on the part of humans and therefore seem incompatible with using medical intervention to prevent disease, but he denies such an entailment. As he explains, he endorses medical intervention because, unlike enhancement, it does not override natural capacities, it merely removes the constraints and permits what is natural to flourish.21 Sandel’s argument against genetic enhancement 16 Sandel 62. 17 Kamm Frances. “Is there a problem with enhancement?” American Journal of Bioethics 5.3 (2005): 6. 18 Sandel 57. 19 Sandel 58. 20 Beyond Therapy: Biotechnology and the Pursuit of Happiness 126. 21 Sandel 57. 6

The Princeton Journal of Bioethics is not about overriding “natural capacities,” however, it is about the attitude of willfulness that genetic enhancement expresses. The problem for Sandel is that in cases of genetic enhancement and medical intervention, the disposition of willfulness is the same. As Kamm points out, Sandel endorses seeking treatments for illnesses by manipulating the genome, yet they too involve desiring “mastery as a means” and “not being open to all things unbidden.”22 Manipulating genes always presents the same attitude vis-à-vis the unbidden, and it is contradictory for Sandel to disapprove of genetic enhancement because of the disposition to hyperagency it promotes, and yet approve of medical intervention at the same time by appealing to different principles. Engaging in a bit of hermeneutics, it appears that it is not, as Sandel maintains, the Promethean disposition that makes genetic enhancement impermissible, but rather an evaluation of the goods and bads derived from genetic enhancement. What in fact motivates Sandel’s approval of medical intervention is that the value of health outweighs the immoral means by which the health is gained, namely the hubris of mankind.23 The desire for mastery is explanatorily inert; what matters is whether on evaluation, the net result is deemed valuable or not. What Sandel really argues is that genetic therapy to alleviate a disease is good not because it somehow expresses a different willingness to accept the unbidden, which it doesn’t, but because the value the objectionable means produces outweighs the inherent immorality of the means. But then the question for Sandel is how he can assert a priori that none of the value that athletes would derive from genetic enhancement could outweigh the evil of using genetic enhancement as a means. Since Sandel provides no further premises to demonstrate why the value derived from enhancement for the athlete can’t outweigh the baseness of the desire as in the case of therapy, he fails to establish his conclusion that genetic enhancement is morally impermissible. 4) Unnatural Sandel also argues that the objectionable feature of genetically enhanced athletes is that they represent a perversion of what is natural. As he explains, genetically enhanced athletes “corrupt athletic competition as a human activity that honors the cultivation and display of natural talents.”24 Later, he expresses his approbation for what is natural when he writes that medical intervention is laudable because it “does not desecrate nature, it honors it.”25 To hold the view that what perverts the natural is not good, Sandel must endorse the premise that what is natural is good. Equating what is natural is good commits a logical error known as the naturalistic fallacy. This argument conflates two distinct and separate categories: the descriptive and the normative. Claims about what are natural are descriptive claims; they state facts about the world. Claims in which we make value judgment are normative claims; they attribute worth to things that exist in the world. To show how the two categories diverge, Frances Kamm writes: “AIDS, tornadoes, and poisons are all parts of nature. Are they sacred and to be honored?”26 The answer, of course, is that they are not to be honored even though they are “natural,” and to say that the answer is no is to assert a normative claim about the value of those natural objects. For Sandel to claim that genetic enhancement is wrong because it perverts the natural, he would have to supply additional prem22 23 24 25 26

Kamm 6. Kamm 6. Sandel 56. Sandel 57. Kamm 8.

Vol. IX 2007 ises to his argument explaining that the proper relationship of humans to nature is one of passivity and why humans have a duty to preserve nature. To simply assert that genetic engineering is wrong because it desecrates the natural without furnishing makes no moral claim about whether genetic engineering is in fact wrong. 5) Human Dignity The arguments against proscribing genetic enhancement on the grounds that it is unfair demonstrate that since a number of permissible analogous practices make sport unjust in exactly the manners in which genetic enhancement would, to deem genetic enhancement unjust is arbitrary. As Erik Parens points out, this “argument from precedent” might obfuscate salient moral differences between different means.27 This argument from precedent takes the following form: “we’ve always used means A to achieve end A; means B also aims to achieve end A; therefore means B is morally unproblematic”28 Parens is wise to admonish us of this oversight and force us to analyze whether or not the different means make a moral difference. The report by the PCOB on genetic enhancement, for example, concludes that it is impermissible because the means to improvement diminish human dignity. The decisive objection to genetic enhancement is that because it is, “on the plane of human experience and understanding,” a change to the human body that “is a calculating act of will to bypass one’s own will.”29 Genetic enhancement is wrong, they contend, because it divorces the agent’s bodily workings from his agency and is thus a self-alienating, self-corrupting, and dehumanizing force; it does “not proceed through intelligible and self-directed action, capable of being informed by the knowledge of human experience.”30 The authors contrast the putatively experientially unintelligible action of genetic enhancement with one that is experientially comprehensible: training. Through the repetition, habituation, practice, and instruction of certain powers and abilities in training, the athlete cultivates and improves those skills.31 This intrinsic connection between “effort and improvement, between activity and experience, between work and result,” is intelligible as the athlete actively cultivates his natural endowments.32 There is a significant moral difference between perfecting a capacity by using it knowingly and repetitively through training, and perfecting a capacity by “means that bear no relation to its use,” because only the former is intelligible to human experience.33 When an athlete takes steroids or uses other biotechnological means to seek enhancement, he is less connected with his improvement, cultivating his talents as if by magic in a manner that is “utterly opaque to his direct human experience,” and not “self-directed,” because it is not work done by him but work done on him.34 As a result of this opacity, the athlete’s bodily workings become alienated from his conscious agency, and the athlete 27 Parens, Erik. “Is better always good? The enhancement project” Hastings Center Report 28.1 (1998): S6. 28 Parens S6. 29 Beyond Therapy: Biotechnology and the Pursuit of Happiness 126. 30 Beyond Therapy: Biotechnology and the Pursuit of Happiness 126. 31 Beyond Therapy: Biotechnology and the Pursuit of Happiness 125. 32 Beyond Therapy: Biotechnology and the Pursuit of Happiness 116. 33 Beyond Therapy: Biotechnology and the Pursuit of Happiness 126. 34 Beyond Therapy: Biotechnology and the Pursuit of Happiness 116. 8

The Princeton Journal of Bioethics himself is a less fully flourishing, self-aware, and self-directed agent. 35 An athlete who obtains genetically enhanced muscles will remain a human who acts when he competes, but because of the self-alienation that results from his unintelligible genetic enhancement, he is “less obviously himself and less obviously human than his unaltered counterpart.”36 He still trains in the self-directed manner of the unaided athlete, but when he trains, he knows that his progress is attributable in part to the new genes and his identity becomes less experiential and more molecular.37 The choice of choosing genetic enhancement can be nothing except disintegrating and self-alienating because, “to transform ourselves in the image we choose and will, we in fact compromise our choosing and willing identity itself, since we are choosing to become less than normally the source or the shaper of our own identity.”38 The authors recognize that the distinction between intelligible and unintelligible agency is both tenuous and a matter of degree. They point out, for example, that basic life activities such as eating, breathing, and sleeping transform our bodies without any self-direction on the part of the agent in the transformation.39 The difference is that eating can never be made “experientially intelligible” in the manner that self-directed activities such as training can, since biological capacities like digestion our beyond the agent’s control but the “lived experience” of training is not.40 What an agent can do is control what he eats, but how that eating transforms his body is beyond his control since he remains ignorant, on the level of human experience, of what is transpiring chemically in his body.41 Even in the most self-directed activities, the agent remains ignorant on the experiential level of what transpires chemically in his body. The difference in levels of experiential intelligibility is therefore a matter of degree; improving native capacities through training is slightly dehumanizing, through diet slightly more-so, and through genetic enhancement the most because it is the most divorced from human experience as a body at work.42 Since these improvement are all alienating and dehumanizing to a degree, the question is where to draw the cutoff for permissibility; which interventions are “consistent with flourishing as an active, self-aware, self-directed agent”?43 In asking to draw the cutoff, however, the authors present a false choice, because their entire analytical framework is flawed. There are a number of problems with this distinction between intelligible agency and unintelligible agency (parsed as “what we do” and “what is done to us”) which is the basis upon which the Council’s objection to genetic enhancement rests. First, the entire objection seems a misplaced, implausible account of identity and self-alienation. Does anyone believe, as the Council’s report proposes, that an athlete who observes proper nutrition suffers, to the slightest degree, “alienation from his own doings, as his identity takes shape at the ‘molecular’ rather than the experiential level”?44 Although the authors contend that proper nutrition is consistent with a life of human flourishing, to suggest that it contributes, even in a minute fashion, 35 36 37 38 39 40 41 42 43 44

Beyond Therapy: Biotechnology and the Pursuit of Happiness 116. Beyond Therapy: Biotechnology and the Pursuit of Happiness 125. Beyond Therapy: Biotechnology and the Pursuit of Happiness 116. Beyond Therapy: Biotechnology and the Pursuit of Happiness 127. Beyond Therapy: Biotechnology and the Pursuit of Happiness 116. Beyond Therapy: Biotechnology and the Pursuit of Happiness 116. Beyond Therapy: Biotechnology and the Pursuit of Happiness 117. Beyond Therapy: Biotechnology and the Pursuit of Happiness 117. Beyond Therapy: Biotechnology and the Pursuit of Happiness 117. Beyond Therapy: Biotechnology and the Pursuit of Happiness 116. 9

Vol. IX 2007 to self-alienation is so implausible as to nullify the premise upon which their objection rests. It simply seems discordant with reality to suggest that self-identity is compromised, and the agent alienated and dehumanized, every time he separates “self-directed experience from underlying biology.”45 Second, they characterize training for a sport in a very limited manner, writing that it consists of repetition of the activity to be enhanced. The runner trains and improves by running repeatedly and the dancer achieves superior performance by dancing repeatedly, connecting the active desire to dance with the self-awareness of dancing.46 They argue that this repetition is integral to the moral status of training; the “lived experience of dancing- of doing the deeds that enable us to do them again and do them bettermatters a great deal.”47 Most training is not of rote repetition of the activity to be improved, however. Athletes cross-train, they lift weights, they do plyometrics, stability and balance workouts, and any number of other activities that are only tangentially related to the deed that is to be made better. Most athletes only rarely engage in the type of training proposed by the Council, and therefore very few athletes are likely to ever realize the “lived experience” judged so valuable by the authors. Third, it is somewhat mysterious what the council means when they write that genetic enhancement is a “calculating act of will to bypass one’s own will.”48 The choice to seek genetic enhancement might, as they contend, be an act that compromises one’s own identity. To assert that it “bypasses one’s own will,” is incomprehensible if will is taken, as they imply elsewhere, to mean the ability to act in a self-directed manner. In conclusion, it appears that none of the proffered arguments are sufficient to ground a prohibition of genetic enhancement on general ethical grounds; it is no more unfair or unjust than many existing practices, it is morally irrelevant to the intrinsic moral status of genetic enhancement whether or not it will be coercive, it is not inconsistent with a disposition to accept the giftedness of life, simply stating that it is unnatural is insufficient to demonstrate its impermissibility, and arguments that it undermines human identity and human dignity are incoherent and implausible. III. THE SPIRIT OF SPORT The preceding discussions of the moral status of genetic enhancement, although pertinent to the athlete, apply to a more general discussion of the permissibility of enhancement. Whether genetic enhancement should be permissible for athletes depends on an additional set of arguments regarding whether the values signaled by genetic enhancement are in accord with the values of sport. WADA’s Anti-Doping Code seeks to preserve “what is intrinsically valuable about sport,” and prohibits doping with certain substances because their use “is fundamentally contrary to the spirit of sport.”49 For regulators attempting to formulate rules regarding a rational drug policy commensurate with the nature of sport, they must first discern and articulate their conception of the nature of sport, a contentious hermeneutical exercise fraught with subjectivity. This section will begin by simply presenting and explicating, without endorsing any, two different conceptions of sport, then conclude by attempting to adjudicate between them. 45 46 47 48

Beyond Therapy: Biotechnology and the Pursuit of Happiness 118. Beyond Therapy: Biotechnology and the Pursuit of Happiness 117. Beyond Therapy: Biotechnology and the Pursuit of Happiness 117. Beyond Therapy: Biotechnology and the Pursuit of Happiness 126. World Anti-Doping Code 2. 10

The Princeton Journal of Bioethics 1) Olympism One option to discern the nature of sport is to analyze the rationale for the revival of the modern Olympics. WADA has embraced this approach, predicating their prohibition of doping upon de Coubertin’s idealistic vision. The brain-child of Frenchman Pierre de Coubertin, the modern Olympics were re-incarnated on June 23, 1894.50 He conceived of his project in grandiose and highly idealistic terms, and documents such as the Olympic Creed embody and preserve his conception of sport. The Olympic Creed states: “The important thing in the Olympic Games is not to win, but to take part, just as the most important thing in life is not the triumph, but the struggle. The essential thing is not to have conquered, but to have fought well.”51 Modern Olympism, according to de Coubertin, is a state of mind and a philosophy of life, and the Olympic spirit embodies a set of values that enhance physical, intellectual, and spiritual growth of participants.52 By competing in accord with the spirit of Olympism, athletes foster a way of life in which they derive joy from exertion and adhere to fundamental ethical principles.53 According to this ideal, sport is the celebration of the human spirit, body, and mind.54 It is characterized by, among other traits, “ethics, fair play, and honesty, health, excellence in performance, character and education, respect for self and other participants, dedication and commitment, and community and solidarity.”55 Although results are important, it is the process of competing and the accompanying ethic that is paramount for de Coubertin and the philosophy of Olympism. WADA’s Ethics Issue Review Panel recently explicated its conception of the “spirit of sport” and its relation to Olympism when it investigated the permissibility of athletes using artificially induced hypoxic conditions. The Panel concluded that whether a means of performance enhancement is permissible depends on whether it “supports or detracts from sport as the extension of natural talents and their virtuous perfection.”56 A talent is perfected in a virtuous when it is admirable in itself; striving is a virtuous trait according to the panel.57 Terms like virtuous perfection require nevertheless provide little additional guidance in determining whether a substance is permissible than “spirit of sport” since both are amenable to so many interpretations. Providing further elucidation, the Panel explains that the crucial test for permissibility is whether the enhancement constitutes a “passive” or “active” use of technologies; whether they are technologies in “relation to which the athlete is merely a passive recipient,” or whether they are technolo50 “Factsheet: The Olympic Movement.” Olympic.org. 2006. International Olympic Committee. 25 Oct. 2006 <http://multimedia.olympic.org/pdf/en_report_1029.pdf>. 51 “The Olympic Games of Antiquity.” IOC. 3 Aug 2004. Olympic.org. 2006. International Olympic Committee. 25 Oct. 2006 <http://multimedia.olympic.org/pdf/en_report_850.pdf>. 52 “Olympic Games, Spirit, and Modern History.” Uen.org 1997. 2002 Olympic and Paralympic Education. 25 Oct. 2006 <http://2002.uen.org/html/sports/lessons/olympicgames.html>. 53 International Olympic Committee. Olympic Charter Lusanne: International Olympic Committee, 2004. 9. 54 World Anti-Doping Code 2. 55 World Anti-Doping Code 2. 56 Murray, Thomas. “Report by the WADA Ethical Issues Review Panel on: Artificially induced hypoxic conditions to modify performance.” WADA Ethical Issues Review Panel: 2006. 3. 57 Murray,3. 11

Vol. IX 2007 gies “with which the athlete actively engages and interacts as part of the training.”58 As this explanation indicates, it is the process of striving and the accompanying ethic of Olympism that is paramount to the spirit of sport for WADA, and doping is impermissible because it violates this conception. 2) Creativity in the Pursuit of Physical Excellence A second characterization of sport emphasizes two essential facets of sports: superior physical performance and human creativity. This conception of sport also locates its inception in antiquity and is inspired by the apocryphal founding of the marathon. In 490 BC, the Athenians sent Feidipedes to Athens to report the Athenian victory over the Persians at the Battle of Marathon. When Feidipedes arrived at Athens, he exclaimed “Victory” (Nike) and promptly died of exhaustion. The modern marathon, inaugurated in 1896 to celebrate Feidipedes’ 26.2 mile feat, celebrates not the Coubertinian ideals of struggle and participation, but the ideal of “superhuman performance, at any cost.”59 According to this position, athletic competitions are more like exhibitions or demonstrations of greatness, and athletes are like classical musicians performing and entertaining by awing the crowd. Quoting sports columnist Jim Murray: You go to see Michael Jordan play for the same reason you went to see Astaire dance, Olivier act or the sunset over Canada. It’s art. It should be painted, not photographed. It’s not a game, it’s a recital. He’s not just a player, he’s a virtuoso. Heifetz with a violin. Horowitz at the piano.60 Competition is certainly a part of the allure of sports, but the distinctive feature of sport is its aesthetically pleasing qualities. Although classical musicians and athletes are both virtuosos that awe us with their performances, athletes and classical musicians differ crucially in their use and perfection of the human body. As the PCOB points out, what is integral to athletics is “the human body in action,” and “the grace and rhythm of the moving human form.”61 The essence of athletics therefore requires a very specific type of excellent performance: that of the human body engaging in action. The position that the aesthetics of sport is part of what is essential is supported by the etymology of the word “spectator”; sports fans come to enjoy the exhilarating spectacle that is extraordinary athletic performances. Athletics is certainly a competition, but the essence of sports is in the athlete’s performance. That the excellence of sports is distinct from competition is illustrated by the fact that one can separate the excellence of a runner from the excellence of running in a race competitively. It is certainly true that fans applaud the underdog who manages, through sheer strength of will, to triumph. But, on this interpretation, our sympathy arises because the underdog is the exception, the welcome anomaly from the spectacular. As a report by the PCOB explains, the fitting praise of the “resolve, effort, and devotion,” of the underdog who triumphs through his willfulness is somewhat misplaced in sports because it would be “strange to celebrate mainly human willfulness in activities such as athletics that display, above all, bodily grace and beauty.”62 The vocabulary choices of the PCOB em58 Murray 3. 59 Savulescu et al. 666. 60 Murray J. “It’s basketball played on a higher plane.” Los Angeles Times 4 Feb. 1996: C1+. 61 Beyond Therapy: Biotechnology and the Pursuit of Happiness 124. 62 Beyond Therapy: Biotechnology and the Pursuit of Happiness 119. 12

The Princeton Journal of Bioethics phasize the two key facets of sports. First, what is essential to sports is their aesthetically pleasing quality, not the process of striving. Second, the aesthetically pleasing quality derives specifically from the beautiful functioning of the human form in its athletic pursuits. This athletic virtuosity is what fans recognize and appreciate; fans are fans because they enjoy the exhilarating sense of awe that accompanies the super-human physical acts of athletes, not because the athletes willed themselves to success. Although superhuman feats are essential to sport, they are not by themselves definitive of sport. It would be a mistake to assert that what is essential to sport is simply the aesthetically pleasing human form in action. Rather, in addition to the physical component of sport, there is also a cognitive element. As University of Oxford philosopher J. Savulescu contends, we can recognize the other distinctive facet of sports by remembering that they are a human endeavor. A defining attribute of sport is therefore the creativity and autonomy exercised by the athletes when they make choices and exercise their own judgment by selecting amongst a number of different options to acquire a competitive edge in their pursuit of physical achievements.63 This distinctively human deliberative capacity manifests itself when athletes decide what their diet should consist of, what training regimen to pursue, and whether or not to seek genetic enhancement.64 As he asserts, “far from being against the spirit of sport, biological manipulation embodies the human spirit- the capacity to improve ourselves on the basis of reason and judgment”65 Sport is a distinctively human activity, and what makes human sport essentially human is the ingenuity exhibited by athletes as they seek competitive advantages while preparing for the athletic competition. The vocabulary choices of thee PCOB echo the cognitive component of athletics as well. “In athletics,” they write, “it is the harmonious and seemingly seamless fusion of mind and body that is crucial to the athletic ideal of superior performance.”66 Athletics is thus not simply the domain of graceful and impressive physical feats, but necessarily includes a mental and deliberative component as well. It is the conjunction between these spheres of human action, the physical and the mental, the coming together to produce awesome feats of physical prowess, that defines sport. According to this conception of sport, there are two attributes essential to sport: excellent physical performance and the distinctively human activity of exercising autonomy in pursuit of this bodily excellence. 3) Adjudicating Between the Two Proposals Which conception of sport should WADA turn to when trying to assess whether genetic enhancement is commensurate with the spirit of sport: the philosophy of Olympism or creativity in the pursuit of excellence? In drafting doping regulations, it is imperative that the ideals espoused by the regulatory agency in their definition of the spirit of sport are not simply decreed, but reflect the behavior, attitudes, and actions of two key constituencies: the fans that allow sport to flourish and the athletes subjected to these regulations. The attitudes of fans are integral because, although sport is possible without them, spectators make sport as we know it today possible. The opinions of athletes are also integral for two reasons. First, they are subjected to the regulations, and if one is to articulate a coherent, justified set of rules that all athletes should abide by, then athletes should have a stake in their formulation. Second, athletes are instrumentally valuable 63 64 65 66

Savulescu et al. 667. Savulescu et al. 667. Savulescu et al. 667. Beyond Therapy: Biotechnology and the Pursuit of Happiness 119. 13

Vol. IX 2007 to this discussion since they have more knowledge and experience than any regulatory agency or fan about what actually occurs in sport, providing them with deeper insight into what ought to occur in sport. In addition, to help adjudicate between these two proposals, we should analyze the structure of sports and ask what we care about and therefore why we think sport is valuable. This analytical framework of looking to the expressions of the athletes, fans, and regulators to adjudicate between the two different conceptions of sport might rest on shaky grounds if there is a collective action problem. One could envision, perhaps, that the behavior and attitudes that the athletes express collectively differ from what they would express individually. In this case, each athlete might individually hold that sport would be better if it were in accord with de Coubtertin’s ideals of Olympism, yet lack the means to effect such a change because if they unilaterally follow de Coubertin’s ideals, they will simply lose. When analyzing the conception of sport, we must therefore keep this objection in mind, asking what evidence there is to support the claim that individually athletes would prefer sport one way, but collectively are forced to participate in a different type of sport in which they would rather not participate. There is something to be said for respecting the rules, something many athletes today fail to do when they dope. At the same time, there is something to be said for a regulatory agency constructing a coherent, non-arbitrary set of rules that are in touch with the reality of the games they govern. As the PCOB writes, “fairness understood as ‘playing by the rules’ is a matter of convention,” and when it comes to steroids, EPO, corked bats, or genetic enhancement, the concern about unfair advantage is “self-created.”67 With this in mind, it is the charge of the regulatory agency to make this convention coherent, logical, and defensible. Regulatory agencies should recognize and acknowledge that the amateur ideals of the Olympics of antiquity and the vision promulgated by de Coubertin and the WADA as the “spirit of sport” should be rejected for three reasons. First, the term “amateur” no longer holds the same meaning as it did originally, nor does it mean the same thing today that it meant to de Coubertin. According to the Oxford English Dictionary, “amateur” originally meant someone “who cultivates anything as a pastime, as distinguished from one who prosecutes it professionally.”68 The term possessed a haughty and elitist connotation, as only those well-off financially could afford to pursue leisurely activities “without regard to pecuniary advantage.”69 It allowed the rich, in contradistinction to those who by necessity accepted financial remuneration, to perceive of themselves as more pure because their motivations were untainted by monetary considerations. Even today, stripped of this elitist connotation, “amateur” hardly applies in any meaningful way to most athletes. Division I college athletes are amateurs in the sense that they do not receive a contract with a salary, but they are compensated through scholarships, gifts, and donated equipment and apparel. Most Olympic athletes also do not get paid to compete in the Olympics, yet they have financial sponsors and reap tremendous financial windfalls if they win, suggesting that the term “amateur” hardly applies to either group. Second, the distinction between “passive” and “active” enhancements promulgated by WADA as the way to test whether a substance violates the spirit of sport is untenable because it bans many currently accepted enhancement means such as massage, ice and heat treatment, or taking whey protein. It is proper that these techniques are 67 68 69

Beyond Therapy: Biotechnology and the Pursuit of Happiness 119. “Amateur.” Def. Oxford English Dictionary. 2nd ed. 1989. 379. “Amateur.” 379. 14

The Princeton Journal of Bioethics permissible since they are morally and athletically unproblematic, which means that a criterion that bans them is flawed. Third, even if the distinction were workable in practice, it is misguided in its essence in its attempt to enshrine the ethic of striving as essential to sport. While de Coubertin was certainly a visionary and an idealist, it is not fair to make spectators and modern athletes beholden to one Frenchman’s antiquated philosophical conception of sport when his views are no longer shared by the supporters of sport or the participating athletes. It is discordant with the structure of sports and the behavior, attitudes, and actions exhibited by many of the fans that support athletics as well as the athletes who are subjected to regulations based on it. Since antiquity, athletics has always taken the form of competition in which athletes receive rewards for their feats. We can ask what it is that athletes are rewarded for: their willfull ethic of striving or their final physical performance resulting from body/mind fusion? As former Chairman of the National Bioethics Advisory Committee Harold Shapiro notes, the structure of sports suggests that the Olympic “struggle” is not what is truly essential to sports because the medals are distributed according to a criterion based on final achievement, not a criterion recognizing the process of striving. If what fans and regulators truly cared about was the process of striving, then they would award medals based on this fact. That they award medals solely on the basis of results is indicative of the fact that sports are not structured around the process of striving. Longtime great Green Bay Packers coach Vince Lombardi succinctly captures how foreign the de Coubterinian ideal is to our understanding of sport, explaining that “winning isn’t everything. It’s the only thing.”70 The Olympian philosophy of striving and virtuous cultivation of talents also does not adequately encapsulate why we care about sport. On this understanding, sport is valuable in a very instrumental manner; we care about sport because participating in athletics helps us hone our will-power. It seems, however, that there is something intrinsically valuable about participating in, and spectating, athletics, that de Coubertin’s ideal cannot capture. Recognizing that sport consists of two facets, the harmonious workings of the human form accomplishing superior feats and the exercise of autonomy in pursuing physical excellence, illuminates the intrinsically valuable components of sport. For fans, sport is valuable as an aesthetic spectacle, something that a conception of sport as striving fails to capture. For athletes, sport is part of a flourishing life precisely because it consists of the fulfilling activity of mind/body fusion in the production of excellence: excellence measured against other opponents, objective metrics, or simply one’s self. The fulfillment that comes with exercising autonomy in the pursuit of physical achievement is therefore certainly an integral part of what makes sport a valuable enterprise, and why we should reject de Coubertin’s ideals. Genetic enhancement, like weightlifting, proper nutrition, altitude training, and lighter shoes, are all methods by which athletes exercise their autonomy in pursuit of superior physical achievement, thrilling audiences with their dazzling feat and virtuoso performances. To reject genetic enhancement on the grounds that it is incompatible with the spirit of sport is to remain obstinate in the face of evidence to the contrary as to what the spirit of sport is. As Savulescu correctly proposes, “Performance enhancement is not against the spirit of sport; it is the spirit of sport. To choose to be better is human.”71 70 Maraniss, David. When Pride Still Mattered: A Life of Vince Lombardi. New York: Simon & Schuster, 2000. 71 Savulescu et al. 670. 15

Vol. IX 2007 It is widely regarded that WADA is waging a losing battle against doping.72 Prohibiting genetic enhancement on the grounds that it violates the spirit of sports will only make WADA’s battle even more futile. Its failure is not a result of the lack of funding or scientific acumen of its anti-doping laboratories, but rather that fans and athletes do not harbor the same vision about the “spirit of sport” that WADA and de Coubertin espouse. Instead of foisting a vision of sport upon fans and athletes that they do not share, administrators attempting to define rules consistent with the spirit of sport should recognize that athletics are far from the modern Olympian ideal of amateur sporting. As Bob Goldman explains, “We’re living in a very different world than when people played sport because they enjoyed the competition and camaraderie”73 Regulatory agencies should therefore accept that what is distinctive about sport, the features that capture its essence and make it a laudable endeavor, is the creative pursuit of aesthetically pleasing excellence and superhuman feat. This ideal, that the aim of sport is performance, not simply valiant exertion, is more commensurate with the nature of modern sport and the motivations that inspire athletes to compete and fans to spectate. As Sandel explains, “The problem with drugs is that they provide a shortcut, a way to win without striving. But striving is not the point of sports; excellence is.”74 It is not to deny that many of the other characteristics of athletes and sports enumerated by WADA are relevant, it is simply to assert that for modern athletes and fans, superior performance takes precedence over, and is more essential to sport than, valiant effort. IV. A JUSTIFICATION OF A BAN ON GENETIC ENHANCEMENT If regulatory agencies should not prohibit genetic enhancement on grounds that it is unethical or contrary to the spirit of sport, should they whole-heartedly embrace it? The answer is no. It is clear that regulatory agencies should, for the moment, prohibit genetic enhancement because the technology is currently unsafe. As the brief discussion of the history of doping elucidated, protecting the safety of athletes was the original impetus for regulatory agencies to become involved in anti-doping measures. In addition, the purpose of the WADA code is “to protect the Athlete’s fundamental right to participate in doping-free sport and thus promote health, fairness, and equality for Athletes worldwide.”75 As the preceding arguments have shown, attempting to make sport doping-free does not entail “fairness” and “equality” as the “thus” suggests. However, it is ethically justified to intervene to protect the athlete’s health, as the Code states, regardless of one’s conception of the spirit of sport. At first glance it seems that prohibiting athletes from using artificial substances because they pose a health risk is paternalistic and a violation of a competent, informed athlete’s autonomy. Since the athlete does not harm anyone except himself, he or she should be free to choose as he or she desires in his or her search for a competitive edge. Non-athletes are allowed to exercise their autonomy when they choose to drink or smoke, so why should athletes be prohibited from engaging in unhealthy behavior that actually has redeeming value? If the contracts, endorsements, sponsorships, honor, fame, glory, or other motivating factors are more important to the athlete than the potential health risks, 72 Haugen, Kjetil. “The Performance-Enhancing Drug Game.” Journal of Sports Economics 5.1 (2004): 84. 74 Sandel 56. 75 World Anti-Doping Code 1. 16

The Princeton Journal of Bioethics then prohibiting artificial enhancements is unfair to that athlete. The competitive nature of sports and the lucrative rewards distort the athlete’s ability to engage in a dispassionate, reflective cost-benefit analysis regarding the use of dangerous performance-enhancing substances. As Richard Pound, Chairman of WADA explains, athletes believe that even miniscule benefits justify large health risks in the drive to “get an edge.” Furthermore, although the athletes may be making informed, competent, autonomous decisions, they are not simply making a personal decision because they also serve as role models for children. That athletes serve as role models is not intrinsically problematic. For example, we might consider it beneficial if children strove to emulate the work ethic of some athletes. In this case, however, it is problematic that the emulated behavior is an unsafe technology because children are not in possession of the same information about health risks as athletes. Although athletes struggle to make informed decisions, children are even less qualified to make an informed decision about seeking potentially dangerous enhancement procedures, making the safety concerns of genetic enhancement more pronounced. The numerous deaths from doping initially catalyzed regulatory agencies to address the associated health risks of artificial enhancements. Genetic therapy is still in its infancy, and although a number of products with tremendous potential currently under investigation, numerous safety hazards with the technology remain. In the case of EPO gene therapy, for example, significant safety issues arise from the hyperviscosity caused by excessive hematocrit levels. Documented risks include an increased rate of thrombosis, a greater risk of stroke and myocardial infarction, and hypertension.76 Although the researchers in the Zhou study of EPO gene therapy on baboons demonstrated the potential for a long-term, efficient, gene delivery system for EPO, the scientists routinely had to dilute the hyperviscous blood of the baboons to keep them alive.77 In other experiments, researchers have encountered cases of unexplained liver failure and immune reaction from the production of anti-EPO antibodies.78 Other researchers have cautioned that a potential safety concern arises from the incorporation of viral vectors into the host genome which would increase the risk of insertional mutagenesis.79 Finally, abnormal regulation of cell growth, toxicity from chronic over-expression of the growth factor and cytokines, and malignancy have all been advanced as putative side-effects of gene therapy.80 Savulescu agrees that regulatory agencies should heed the ethical injunction to protect the health of the athletes, arguing that there should only be one limit to doping in sport: safety.81 Speaking with a reporter from El Mundo former IOC President Juan Antonio Samaranch is alleged to have said: ‘‘Doping now is everything that, firstly, is harmful to an athlete’s health and, secondly, artificially augments his performance. If it’s just the 76 McCrory, P. “Super athletes or gene cheats?” British Journal of Sports Medicine 37 (2003): 192. 77 Zhou S et al. “Adeno-associated virus-mediated delivery of erythropoietin leads to sustained elevation of hematocrit in nonhuman primates.” Gene Therapy 5 (1998): 666. 78 McCrory 192. 79 Unal, Mehmet and Durisehvar Ozer Unal. “Gene Doping in Sports.” Sports Medicine 34.6 (2004): 359. 80 Unal and Unal 359. 81 Savulescu et al. 668. 17

Vol. IX 2007 second case, for me that’s not doping. If it’s the first case it is.’’82 Whether he was speak ing candidly, made a mental blunder, or did not in fact make the statement at all is open to speculation, but it nevertheless expresses a defensible sentiment. Although the essence of human sport is the fusion of body and mind, the exercise of ingenuity in the pursuit of physical performance excellence, regulatory agencies have a duty to ensure the health and fitness of every athlete to compete.83 The putative ethical distinction between the artificial and the natural that Sandel tried to exploit is untenable, and what should matter for regulatory policy is safety. They should therefore ban all genetic enhancement until the delivery of the genes becomes safe. Once, if ever, the delivery method becomes unproblematic, the regulatory agencies should then address what amount or levels of gene products are safe. Admittedly, health risks exist along a continuum, so choosing a threshold safety level for a gene product is in some sense arbitrary. Even though red and orange exist on a continuum, we can distinguish between the two at the extremes and are uncertain at the margins. Setting safety thresholds is analogous; it is clear that the extremes are safe or unsafe and the middle will be contested. This is not a reason, however, to forego making the principled ethical decision that some levels of gene products are unsafe. After consulting with medical experts, regulatory agencies should therefore set regulatory measures to ensure that the athlete has a safe hematocrit, regardless of whether the EPO level was obtained via natural or artificial means. As Josephson explains, this view has always been in play in the prohibition of doping, even if it has typically been relegated to the background behind concerns of fairness and the spirit of sport. “We don’t outlaw things simply because they give you an advantage,” he writes.”84 Rather, the reason we ban doping is that when athletes make a distorted cost-benefit analysis and therefore use unsafe products, they “are sacrificing their future for today.”85 In the future, if genetic enhancement is ever deemed safe for humans, there would remain no reason to prohibit it in sports- on general ethical principles or because it transgresses an appropriately defined spirit of sport. In fact, it would actually be harmful to prohibit it. By prohibiting certain genetic enhancement, the current regulatory system would force athletes that want to employ genetic enhancement to try to circumvent detection, increasing the procedure’s risk. Were the regulatory agencies to legalize genetic enhancement and decree that the safety of the athlete is paramount, biologists would work on producing the safest methods of genetic enhancement, not the least detectable.86 When genetic enhancement becomes feasible, if it is still prohibited by WADA because it violates the putative spirit of sport, a black market will form to meet demand as it does for prohibited substances today. In addition to being unregulated by definition, black markets entail products of dubious quality, furthering the chances of damaging the athlete’s health. Working within a legalized, regulatory framework will ensure that genetic enhancement occurs in the safest environment possible. 82 Associated Press. “Samaranch wants clear definition on drugs.” El Mundo. 26 Jul. 1998. 83 Savulescu et al. 668. 84 Maese A1. 85 Maese A1. 86 Savulescu et al. 670. 18

The Princeton Journal of Bioethics

V. CONCLUSION Doping in athletics has a lengthy history in athletic competitions, and only recently have regulatory agencies seriously committed themselves to prohibiting doping and enforcing their ban. WADA has acted proactively by banning genetic enhancement before it has even been attempted, yet there ban is unjustified since there are no ethical precepts against athletes using genetic enhancement. Arguments that it is unfair, coercive, hubristic, unnatural, or diminishes the dignity of human activity all fail to substantiate the ban. Further arguments about genetic enhancement being incompatible with the spirit of sport rely on an implausible conception of the spirit of sport. Genetic enhancement is currently unsafe, and for that reason, regulatory agencies should ban it for now. In conclusion, a regulatory agency that wishes to make the rules of sport coherent, logical, and justified should, when or if the time comes, permit genetic enhancement once it is safe for humans.

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Cryopreserved Embryos: What should be done when marital relations chill? Alix Rogers University of Pennsylvania This paper examines the complex legal dilemmas raised when divorcing couples cannot agree on the disposition of their stored cyropreserved pre-embryos. Examination of six cases that have arisen in various state courts reveals the development of the law towards resolution. Issues such as the status of the embryo, reproductive rights and privacy, contract enforcement, and the boundaries of public policy are all discussed. Ultimately, it will be shown that while the academic literature has focused on the contract law aspect of the topic, a clear outline and weighting of an individual’s positive and negative reproductive rights and privacy is the most crucial determination for facilitating resolution and preventing legal action.

In 1978 Louise Brown, the first baby to be created using In-Vitro Fertilization (IVF), was born. Since then, the use of various Assisted Reproductive Technologies (ART), particularly IVF, has become standard procedures for infertile individuals. The use of these technologies has enabled thousands of infertile individuals and couples to fulfill their dreams of parenthood, while creating new and complex legal and ethical dilemmas. One such dilemma faced by courts has been over the use and storage of cryogenically frozen pre-embryos of divorced couples. Courts have been called upon to decide which party’s interests should prevail in disputes when a couple cannot agree on disposition. Since the first case occurred in 1992, substantial development in court reasoning has occurred. The most significant developments have centered on the legal status of the embryo, contract law, and reproductive rights and privacy. Relying upon these three components of the law, higher court rulings have all preserved the principle that implantation should not occur without the consent of both parties. This paper will examine six cases in the United States to illustrate the historical development in the law, discuss the adopted methods of resolution, and suggest that a comprehensive determination of an individual’s reproductive rights and privacy needs to be developed in each state, in order to provide a more comprehensive framework to help preempt parties from pursuing legal action to resolve disputes over disposition of a couple’s cryogenically frozen pre-embryos. IVF is a treatment for infertility that produces fertilized eggs outside the body. First, a woman undergoes hyper-stimulation hormone therapy to produce numerous ova which are harvested by a medical practitioner. The ova are then fertilized with sperm to produce pre-embryos, and they are then transferred to the uterus for implantation. Due to the risks of multiple births, it is possible that not all of the pre-embryos produced in one cycle of IVF will be implanted. In order to preserve the pre-embryos for future use, they can be cryogenically frozen in liquid nitrogen. If needed, they can be thawed and implanted at a later date.1 Pre-embryos are routinely frozen in this manner because while sperm has 1 C. Lawrence, “Procreative Liberty and the Preembryo Problem: Developing a Medical and Legal Framweork to Settle the Disposition of Frozen Preembryos,” Case Western Reserve Law Review 52 (2002): 721-722. 20

The Princeton Journal of Bioethics been successfully frozen for some time, unfertilized eggs have proven particularly difficult to freeze and thaw.2 Thus, to spare a woman from numerous egg retrievals and maximize a couple’s chance of having a child, cryogenic freezing of fertilized eggs is a widely utilized option in IVF clinics. To date there are an estimated 400,000 stored pre-embryos across the United States.3 Problems arise however when a couple becomes separated, divorced, or for some other reason, cannot agree about the disposition of their frozen pre-embryos. The cases that end up in the courts have involved divorced couples where one member is actively seeking to dispose of, donate or implant the pre-embryos against the wishes of the other party. For the purposes of this paper, the discussion will be limited to pre-embryos that were not created using donor sperm or ova. Thus, the pre-embryos in question are the genetic products of each party in the suit. To date, no binding US Supreme Court decision or federal government policy has been made with regards to the disposition of frozen pre-embryos that are the shared genetic products of disputing couples. Ten states have enacted pertinent legislation. Louisiana has adopted a relatively unique position by decreeing that pre-embryos are to be considered as “judicial persons” with an interest in implantation.4 While a case has not arisen to challenge the validity of this legislation, under this legal rubric it can be expected that legal custody of pre-embryos in dispute would be awarded to the party who desired to implant them. Two states have statutes that address consent to the process of IVF and cyrogenical freezing. Florida requires that couples sign agreements for disposition in case of contingencies such as death or divorce,5 New Hampshire requires couples to undergo counseling before freezing embryos and has a fourteen-day limit for the storage of ex-utero pre-embryos.6 Delaware, North Dakota, Oklahoma, Texas, Utah, Washington and Wyoming stipulate that consent to participation may be withdrawn at any time prior to implantation and that, “an individual who withdraws consent under this section is not a parent of the resulting child.”7 This legislation does not address the ability of an individual to contract away their right to withdraw consent, nor does it address whether by withdrawing consent one party can prevent any use of the pre-embryos in question. However, as the examination of the existing case laws will show, none of these legislative stipulations completely resolves the legal issues. For example, while the couple may be required to sign a consent form, some courts have ruled that such forms are not legally enforceable contracts. The first cast case dealing with a dispute over cryogenically frozen pre-embryos to arise in the US court system was in 1992 in the state of Tennessee in Davis v. Davis.8 This case is particularly interesting because it addressed the issue of the status of the pre-embryo in its analysis of the Person vs. Property dichotomy. The court’s conclusion of a ‘special interest’ status is an important step in developing the case law around this complicated issue. During their marriage, Mary and Junior Davis created seven pre-embryos all of which were 2 K Powell, “Age is No Barrier,” Nature 432 (2004): 40. 3 Rick Weiss, “400,000 Human Embryos Frozen in the U.S.” Washington Post 8 May 2003, 17 Oct. 2006 <http://www.washingtonpost.com/ac2/wp-dyn?pagename=articl e&node=&contentId=A27495-2003May7&notFound=true> 4 LA. Rev. Stat. Ann. §§ 9: 121-9:133 from Roman v. Roman 193 S.W.3d. 40 (TX App. 2006) 5 Fla. Sta. Ann. §742.17 6 N.H. Rev. Stat. Ann. §§ 168-B:13-168B:15 7 Uniform Parentage Act 2002 8 Davis v Davis, 842 S.W. 2d 588 (Tenn. 1992). 21

Vol. IX 2007 still cryogenically frozen when they filed for divorce. A dispute over the pre-embryos arose because Mrs. Davis originally desired to implant them in her uterus. However, by the time the case was considered by the Supreme Court of Tennessee, she wished to donate them to an infertile couple. Mr. Davis, in contrast, wished for them to be destroyed. The trial court held “that the pre-embryos were ‘human beings’ from the moment of fertilization.” Since implantation over destruction was in the best interest of the “children in vitro”, the judge awarded “custody” of the pre-embryos to Mrs. Davis. The reasoning of the legal personhood status of pre-embryos was rejected by the Court of Appeals and by every subsequent court, yet the Tennessee Supreme Court was unwilling to categorize the pre-embryos as property, akin to all other types of human tissue and rejected the determination of ‘property’ found by the Appeals Court. Instead, the Supreme Court concluded that pre-embryos “occupy an interim category, that entitles them to special respect.” This standard is the one that is advocated by the American Fertility Society9 and the Department of Health, Education and Welfare’s 1979 Ethics Advisory Board (DHEW). It is also the standard adopted in subsequent higher court decisions for similar cases in other states. From the platform of the ‘special status’ determination of pre-embryos, the Supreme Court of Tennessee concluded that the couple had a joint interest in their disposition. The court held that the “preferences of the progenitors” must be considered, and indicated that prior agreements should be the starting point for determining outcomes. Thus, the court stated that “an agreement regarding disposition of any untransfered embryos in the event of contingencies…should be presumed valid and should be enforced as between the progenitors.” However, the Davis’ had no such prior written agreement. To make its determination, the court instead relied upon a recognition that such cases must balance the fundamental rights of citizens to procreate or not.10 Federal and state courts have consistently interpreted the Fourteenth Amendment as guaranteeing certain privacy rights as fundamental. Fundamental rights are those rights that are seen to be so “rooted in the traditions and conscience of our people as to be ranked as fundamental.”11 The penumbral approach to privacy rights, since first articulation in Griswold v. Connecticut, forms the basis of the discussion of privacy rights in procreation found in Davis. In addition, Griswold v Connecticut provided legal precedent for reproductive privacy for couples. In Eisenstadt v Baird, this right was firmly established for individuals when the Supreme Court stated that, “if the right of privacy means anything, it is the right of the individual…to be free from unwarranted governmental intrusion into matters so fundamentally affecting a person as the decision whether to bear or beget a child.” The Davis court recognized to rights of procreative autonomy in the case, “the right to procreate and the right to avoid procreation”. Thus, they had to balance the ‘positive’ reproductive rights of the wife against the ‘negative’ reproductive rights of the husband.12 In the holding, the court upheld the husband’s wish to avoid procreation over the wife’s desire to gestate or donate the pre-embryos because the burden the husband would bear if the pre-embryos were to be implanted was greater than the burden the wife would bear if the pre-embryos were destroyed.13 However, it should be noted that the court did not extend an unlimited veto power to the party wishing to avoid procreation. The court explicitly stated that their ruling assumed “that the other party has a reasonable possibility of achieving 9 Lawrence, 721. 10 Davis v Davis, 842 S.W. 2d 588 (Tenn. 1992). 11 Roe v. Wade, 410 U.S. 113 (1973). 12 Robertson, 179. 13 Davis v Davis, 842 S.W. 2d 588 (Tenn. 1992). 22

The Princeton Journal of Bioethics parenthood by means other than use of the pre-embryos in question.”14 Five years later the case of Kass v. Kass arose in New York. From the development of the law perspective, the Kass case presents two interesting advances in privacy law and contracts. The trial court awarded the pre-embryos to the wife for fertilization. Their reasoning was not based upon the status of the pre-embryos, but on privacy concerns. Following the precedent of respecting the reproductive privacy and autonomy of women in Roe, the trial court held that Mrs. Kass, as a female participant in IVF treatment had “exclusive control over the fertilized eggs created…just as a pregnant woman has exclusive decisional authority over a nonviable fetus.”15 The New York Court of Appeals rejected this ruling and found that a woman’s right to privacy and bodily integrity in reproductive choice (as articulated in Roe v. Wade) does not apply until implantation occurs.16 In determining the case, the court instead relied upon principles of contract law. Both parties had signed a disposition agreement at the beginning of the IVF treatment that stipulated that the pre-embryos would not be released from storage without the consent of both parties, and that in the event that they were unable to make a decision with regards to the disposition, the clinic was directed to donate them for research purposes. Following the precedent of Davis, the court ruled to uphold the contract, asserting that the “informed consents signed by the parties unequivocally manifest their mutual intention” for donation.17 The next three cases that arose departed from the Davis and Kass rulings’ support for a contractual approach. Discussions of balancing rights to reproductive privacy are found in Davis and Kass, but they do not go so far as to extend the argument found in A.Z. v B.Z. and J.B. v M.B. that public policy considerations of reproductive rights could invalidate disposition contracts. One case in particular provided the legal precedent for the position of invalidating contracts that create stipulations for reproductive decisions. In re Baby M, the New Jersey Supreme Court found that it was against public policy to enforce a surrogacy contract which required the biological mother/surrogate to give up the baby to the biological father and his wife. Relying upon this precedent in A.Z. v B.Z, the Massachusetts Supreme Judicial Court refused to honor a prior written disposition agreement that stipulated that the preembryos would be under the wife’s control. The court refused to “compel an individual to become a parent over his or her contemporaneous objection.”18 While the court stated that, “As a matter of public policy, we conclude that forced procreation is not an area amenable to judicial enforcement,” the court did not reject the wife’s suit on public policy grounds. Instead, the court put forth a variety of contract justifications. The most legally interesting justification stems from the fact that the contract presented to the court was the couple’s informed consent form. The court ruled that the consent form does not “indicate, that the husband and wife intended the consent form to act as a binding agreement between them 14 Davis v Davis, 842 S.W. 2d 588 (Tenn. 1992). 15 Kass v. Kass 696 N.E. 2d 174 (NY 1998) 16 This argument has interesting parallels to the argument articulated by McGee and Caplan that the status of the embryo is fundamentally different if it is in utero or in a dish (McGee, G., Caplan, A. “The ethics and politics of small sacrifices in stem cell research”. Kennedy Inst. Ethics Journal 9, 2 (1999), p. 151-158) 17 Kass v. Kass 696 N.E. 2d 174 (NY 1998) 18 Elster, N. “Assisted Reproductive Technologies: Contracts, Consents and Controversies”. American Journal of Family Law, Winter 2005, 18. 4 p. 193-199. 23

Vol. IX 2007 should they later disagree…Rather, it appears that it was intended only to define the donor’s relationship as a unit with the clinic.” Thus, the court found that the “consent form is legally insufficient” and stated that, “We express no opinion whether an unambiguous agreement…. could be enforced over the contemporaneous objection of one of the donors…” It should be noted that the case of A.Z. v. B.Z. resulted in some discussion in the ART literature about measures that must be taken by IVF clinics to ensure that their documents are legally sound. For example, the contract’s failure to include a duration provision was a cited inadequacy which should be provided for. The hope is that by ensuring the legal weight of such documents, future litigations can be prevented.19 The following year, the New Jersey Supreme Court ruled in J.B. v. M.B. that a divorcing husband could not have authority over the disposition of the pre-embryos. The court found that the couple had “not entered into a contract regarding the disposition…” because the consent form does not represent the “parties’ clear intent.” Moreover, the court concluded that “public policy concerns that underlie limitations of contracts involving family relationships are protected by permitting either party to object at a later date….” While the court held that, in general, recognized contacts should be asserted and that disposition contracts were useful when a couple was initiating the procedure, they concluded that valid pre-embryo disposition contracts should be “subject to the right of either party to change his or her mind about disposition.” In 2003 in the case of In re Witten, the Iowa Supreme Court rejected the contractual approach outlined in Davis and Kass. Instead, the court found that it would be against Iowa public policy to enforce a prior agreement over the objection of one of the parties. Thus, the court upheld the negative right to avoid procreation over the positive right to procreate, and advocated for the contemporaneous consent model put forth in J.B. v. M.B., which allows either party to withdraw consent at any time prior to implantation. The three cases of A.Z. v. B.Z., J.B. v. M.B., and In re Witten represent various State courts moving in a direction of upholding public policy concerns that would prevent implantation without the consent of both parties. The most recent case occurred in 2006 in Texas wherein the court upheld the IVF clinic’s disposition agreement as both a legal contract and consistent with public policy. While it may appear that the court in Roman v. Roman was inconsistent with the most recent rulings, as will be shown, the decision to enforce the couple’s prior contract is consistent. As mentioned earlier, Texas’ Family Code has some provisions that applied to the case. The most important was a requirement in IVF procedures that consent may be withdrawn at any time before the implantation of pre-embryos.20 There is, however, no legislative stipulation on what should occur in the event of contingencies such as death or divorce. After considering the earlier cases, the court held that disposition contracts which are voluntarily entered into, subject to mutual change of mind, and jointly expressed do not violate the public policy law of Texas. Informed consent forms were recognized as valid contracts. Furthermore, by requiring disposition contracts to be subject to mutual consent in order to be valid, the Texas court upheld the findings that underlie the earlier cases which rejected the validity of the disputed contracts. By asserting the validity of the contract, the court did not have to base its decision upon an individuals’ right not to procreate without consent. Instead, the decision was based 19 For reference, see: Elster 193-199, Lawrence 721-751, Pennings 295-298, Robertson 989-1046. 20 Tex. Fam. Code Ann. §160.706. 24

The Princeton Journal of Bioethics upon contract law. The contract in question was the couple’s informed consent form in which they had directed the IVF clinic to destroy their pre-embryos in the event divorce. The court rejected the wife’s various arguments, such as the fact that her medication prevented her from accurately expressing her intentions, to invalidate the contract. The provision that would have invalidated the contract was not enacted since neither party withdrew consent. Thus, because the parties were now divorced, the stipulation for destruction, the court ruled, should be enacted. Therefore, the opinion was consistent because to be valid, the contract must be subject to either party’s ability to withdraw consent at any time prior to implantation. The Roman decision is a perplexing case because it advanced the law while also creating a major loophole. The court’s upholding of the legal validity of informed consent documents is an important progression. Courts have recognized that disposition agreements are important for allowing couples to discuss their wishes, work out misunderstandings prior to the event of freezing and hopefully prevent litigation. The decision also incorporates the concerns raised in A.Z. v B.Z. by non-consented procreation by requiring an enforceable document to be subject to the parties’ ability to withdraw consent at any time. This stipulation is meant to protect the reproductive and privacy rights of individual citizens, but it does create a large loophole. If in the Roman case, either party had withdrawn their consent, the disposition agreement would no longer be valid. Hence, the disposition of the pre-embryos would have to be decided not on the basis of contract law, but by balancing the rights and interests of either party. In all of the cases described, this loophole would not alter the outcome of the case. Balancing the procreative rights and interests of each party support the interests of the party who wishes to avoid procreation. However, as was recognized in Davis, the ruling may not be able to be applied universally. A case where in which the pre-embryos in question represent one party’s sole chance at parenthood has yet to develop in the United States. The Davis court explicitly stated that their ruling assumes “that the other party has a reasonable possibility of achieving parenthood by means other than use of the pre-embryos in question”. This consideration factors into court decisions that were based upon balancing each party’s positive and negative rights for procreation. For instance, in A.Z. v. B.Z. the couple already had a child, and in J.B. v M.B. the court noted that, “M.B.’s right to procreate is not lost if he is denied an opportunity to use or donate the pre-embryos”. Hence, there is no legal precedent in the United States that would provide indication as to how a court would resolve such a case. The United Kingdom was faced with such a case in Evans v. The United Kingdom. As a result of cancer treatment, Natalie Evans was rendered infertile. Prior to her treatment she and her partner cryogenically froze several pre-embryos created with their respective gametes. When their relationship ended, her partner withdrew his consent for their use. It is unclear how a United States Court would have ruled if the case had arisen on the other side of the Atlantic. The Davis court mentions that adoption should not be forgotten as an option for achieving parenthood, but an individual could make a conceivable case for the realization of goals of genetic parenthood as fundamentally different from adoptive parenthood. If courts continue to attempt to balance the reproductive rights and interests of both parties, it is possible that a court will rule in favor of the party who wishes to procreate. The situation is not much improved if the loophole of removal of consent is closed with a mandate for the contemporaneous consent adopted In re Witten. Under the United 25

Vol. IX 2007 Kingdom’s Human Fertilisation and Embryology Act (HFEA) of 1990,21 either party is allowed to withdraw consent prior to implantation. The HFEA provisions thus require contemporaneous consent for implantation.22 Ms. Evans sued for access to the pre-embryos arguing that “her right to family life under Article 8 of the Human Rights Act23” should outweigh the right of her partner to revoke his consent under the HFEA act. However, the European Court of Human Rights ruled that the “Court does not find that the absence of a power to override a genetic parent’s withdrawal of consent, even in the exceptional circumstances of the present case, is such as to upset the fair balance required by Article 8.” While the European court rejected her argument, it is within the realm of possibility that a United States Court would uphold in a comparable case that the positive procreative rights of the party who has no other means of genetic parenthood should trump the negative rights of the other party. The courts consistently refer to the decision as balancing the rights of either party and it is quite possible that such a scenario could tip the scales. However, it is also possible that a comparable decision would be reached in the United States because it is clear that the courts are uncomfortable with the prospect of forcing one party to become a genetic parent against their explicit wishes. The majority of legal articles on the subject of frozen pre-embryo disposition center 21 Schedule 3 provides the procedure for giving consent as: 3.—(1) Before a person gives consent under this Schedule— (a) he must be given a suitable opportunity to receive proper counselling about the implications of taking the proposed steps, and (b) he must be provided with such relevant information as is proper. Schedule 4 talks about variation and withdrawal of consent, which are: 4.—(1) The terms of any consent under this Schedule may from time to time be varied, and the consent may be withdrawn, by notice given by the person who gave the consent to the person keeping the gametes or embryo to which the consent is relevant. (2) The terms of any consent to the use of any embryo cannot be varied, and such consent cannot be withdrawn, once the embryo has been used— (a) in providing treatment services, or (b) for the purposes of any project of research. From Gorar, M. “Not sympathy but justice: Natalie Evans v. Human Fertilisation and Embryology Act of 1990”. Hertfordshire Law Journal 4. 1. P. 45-46 22 It should be noted that the HFEA act provides a coherent legal framework and legislative agency which regulates ART clinics and practices nationwide, something which is lacking in the United States. For a discussion of the disparities see: Ouellette, A., Caplan, A., Carrol, K., Fossett, J., Bjarnadottir, D., Schickle, D., McGee, G., “Lessons Across the Pond: Assisted Reproductive Technologies in the United Kingdom and the United States”. American Journal of Law and Medicine. 2005. 31. P. 419-446. 23 Article 8(2) states that there shall be ‘no interference by a public authority with the exercise of this right except such as is …. necessary in a democratic society … for the protection of the rights and freedoms of others.’ It should be noted that the rights enshrined in Article 8 are basically equivalent to American notions of liberty and privacy. From Douglas, G. “Who has the right to determine the fate of their embryos?” Cardiff Centre for Ethics, Law and Society- Issue of the month. October 2003. Retrieved 2 November 2006 from <http://www.ccels.cardiff.ac.uk/issue.html> 26

The Princeton Journal of Bioethics on determining the validity and enforceability of contracts.24 Contracts are important because they generate dialogue and require each party to articulate their thoughts, they also create problems. However, use of pre-embryo disposition contracts is not the ultimate issue that needs to be resolved. Absolute binding contracts, as upheld violate public policy notions of protecting individual rights and privacy. Contracts with provisions for rescinded consent on the other hand, create loopholes which ensure the decision must be made as if there was no contract to begin with. Thus, the resolution of this issue relies not in defining the extent of contract law, but in determining the boundaries and weights of reproductive privacy and rights so that a proper balancing of each partyâ&#x20AC;&#x2122;s interests and rights can be achieved. Determination of the extent and weight of reproductive rights will have to be determined by a court when a case similar to Evans v. The United Kingdom occurs in the United States. This would be similar to how reproductive rights have been developed and defined by previous cases such as in Eisenstadt v. Baird. To avoid the necessity of such as test case however, it would be beneficial if individual states considered the issue and passed legislation that would help define these rights, encourage couples to have a dialogue about their opinions prior to undergoing IVF treatments, and promote the development of valid and informative informed consent documents, all of which would hopefully help to avert the legal resolution of these often unforeseen disagreements between divorcing couples.

24 For more see: Elster 193-199, Lawrence 721-751, Pennings 295-298, Robertson 989-1046, Annas 373-376. 27

Vol. IX 2007

The First Wealth - Health as a Duty to Oneself Jason Shen Stanford University

Whose responsibility is it to care for our health? We, as patients, generally seek a doctor when we think something is wrong with our health. We ask a doctor to tend to our wounds, treat our illnesses and promote our health, while “first doing no harm” . We ask the government to provide us with universal health care. We ask McDonalds to stop advertising to our children. We look to many others to care for our health. But do we ever look do ourselves? I want ask: Do we have a duty to prevent harm to our bodies? Do we have a duty to promote the health of our bodies? In the terms of bioethical principles, do we have the duty of nonmaleficence and beneficence? It might be prudent to take care of ourselves and cultivate our health and generally people do try to care for themselves. But one’s health is generally not considered a duty to oneself to promote the way one’s health is considered a duty for a doctor to promote. Little has been said on this topic in the field of bioethics; it is a topic I want to explore. introduction

Most discussions of bioethics revolve around what sort of actions doctors and caretakers can or should do for their patients: whether they can or should take a terminally ill patient off of life-support if he wishes it; whether they should save a 23 week-old premature fetus who has serious defects that will cause her to die before age five; whether they should alert authorities when their patient confesses to have and use a illegal drugs, etc. By and large, bioethics is generally concerned with the actions of doctors and caretakers towards their patients. These discussions are important and worth considering, but they are also well hashed. There are plenty of papers, essays and books on euthanasia and abortion. I want to bring a fresh topic to the conversation: I want to explore the actions of patients themselves. In general, these actions are overlooked and I believe a discussion about the duties of patients could facilitate a new framing of health care distribution issues. People are generally concerned with their well-being, of which health is a large part. The American media is filled with health reports of foods that can cause or prevent cancer, and is filled with advertising promotion for exercise equipment that guarantees to produce results and multivitamin pills that will supercharge our metabolism and make us feel younger and better than ever before. These facts alone might suggest that Americans as a whole are very concerned with our health. In some ways we are more healthy than we once were: we smoke half as much as we did 50 years ago, our average life expectancy is the highest it’s ever been (77.9 in 20051), infectious disease rates have gone down, and transfats, known to greatly increase the risk of heart disease, have been banned in restaurants in cities across the nation. Yet in other ways, Americans are very unhealthy: 60% of Americans are overweight and at least 25% are considered obese. Type-2 diabetes rates have grown 27%. One in five 55-65 year olds, most of whom have yet to retire, report fair or poor health. In any case, America 1 Arialdi M. Miniño, M.P.H, et al. Deaths: Preliminary Data for 2005. Centers for Disease Control and Prevention’s  National Center for Health Statistics 28

The Princeton Journal of Bioethics spends a great deal on its health: 1.6 trillion in 2003, more than any other nation.2 Perhaps this has something to do with our attitude towards our health. Whose responsibility is it to care for our health? We, as patients, generally seek a doctor when we think something is wrong with our health. We ask a doctor to tend to our wounds, treat our illnesses and promote our health, while “first doing no harm”3. We ask the government to provide us with universal health care. We ask McDonalds to stop advertising to our children. We look to many others to care for our health. But do we ever look do ourselves? I want ask: Do we have a duty to prevent harm to our bodies? Do we have a duty to promote the health of our bodies? In the terms of bioethical principles, do we have the duty of nonmaleficence and beneficence? 4 It might be prudent to take care of ourselves and cultivate our health and generally people do try to care for themselves. But one’s health is generally not considered a duty to oneself to promote the way one’s health is considered a duty for a doctor to promote. Little has been said on this topic in the field of bioethics; it is a topic I want to explore. Road Map I would like to first introduce four fictional examples that I will consider as I develop my argument. It is not immediately obvious that we can have a duty we owe to ourselves – I will then establish this from a Kantian framework. I will examine what kind of duties Kant believed we owe ourselves. I believe that health is one such duty that we owe to ourselves and that Kant’s moral philosophy can support this claim. I will examine what kind of a duty we have to our health, and by the use of the established fictional examples, extract a set of rules that can determine when we are (or are not) acting out of a duty to our health. Finally I will make some conclusions about what the implications of a duty to one’s health are. Four People I would like to consider four hypothetical people who accompany us in our journey to search for a duty to one’s health. Each person has a different lifestyle that causes them to harm, or be at risk for harming their health. For simplicity let’s assume they are all Caucasian and 30 years old. The first is Carl the couch potato, who works as a telemarketer. He is, ironically, a huge fan of medical television shows like Grey’s Anatomy and House. He watches them 2 Cathy A. Cowan, M.B.A. and Micah B. Hartman Financing Health Care: Businesses, Households, and Governments, 1987-2003 U.S. Department of Health & Human Services. Centers for Medicare & Medicaid Services. 3 The words “first, do no harm” are not found in the Hippocratic Oath, as it is commonly believed. Some scholars attribute the phrase to Hippocrates in one of his books, while scholars suggest it stems from the Latin phrase “Primum non nocere”, written by the Roman physician, Galen. 4 These are two of the four “principles of bioethics” that we generally hold doctors and caretakers to when considering bioethical dilemmas. The other principles two are autonomy and justice as described in: Tom L. Beauchamp, James F. Childress. Principles of Bioethics. Oxford University Press, USA; (February 15, 2001) 29

Vol. IX 2007 every night while eating nachos with extra cheese and drinking Mountain Dew. However, his unhealthy lifestyle has skyrocketed his blood sugar and adipose fat tissues, which cause him to be at risk for type-2 diabetes. Carl is very attached to his television shows and is unwilling to change his habits. Next we have Melissa the mountain biker. She works at a Dick’s Sporting Goods store during the week and drives out to the mountains on weekends, where she bikes, hikes and climbs. She eats a healthy diet of whole grains, legumes, vegetables and fresh fruit. She loves what she does and has no intention of changing her lifestyle. She is physically strong and aerobically fit, but her very active lifestyle puts her at risks for injuries like broken bones or even paralysis due to falls or crashes. Steve the stockbroker works on the frantic ground floor of Wall Street for Fidelity Mutual. His workday is long and incredibly stressful, but he has no intention of quitting because he likes his salary (over $200,000 a year with bonuses). The stress of his job has elevated his glucocorticoid levels, causing him to have high blood pressure and high cholesterol levels, both of which could lead to heart disease. Finally, we have Dylan the doctor. Dylan is very dedicated to his work and has hours at least as long as Steve. As an infectious disease specialist, he is responsible for identifying and containing tuberculosis outbreaks. This job, however, means Dylan must travel to locations where he has a high risk of contracting the disease himself. The examples of Carl the couch potato, Melissa the mountain biker, Steve the stockbroker and Dylan the doctor will allow me to test my ideas of duty to oneself and one’s health. I will return to them soon, but I must first lay down some groundwork about the concept of duty. What is a Duty? Kant believed that as beings who are capable of rational choice, people ought to act in accordance to moral law. These laws were generated from the categorical imperative – which, unlike a hypothetical imperative5, creates maxims of action that ought to be followed by all people, regardless of their goals or ends6. A maxim of action is a rule for behaving in a certain situation. Melissa the mountain biker might have a maxim which says: “when biking down a steep hill, make sure to wear a helmet, knee and elbow pads, and gloves”. This maxim is generated from a hypothetical imperative. If one wants to be safe while biking, then one ought to follow this maxim. The categorical imperative creates maxims of actions which are universally valid and always applicable. In this sense, the categorical imperative creates moral laws that all people ought to follow, and ought to want to follow. It becomes a duty to follow these moral laws. Kant states that a law makes an action “objectively necessary.”7 This action 5 A hypothetical imperative gives a course of action which one can follow if one wishes to achieve a certain end. It is up to that person to decide if they wish to pursue that end’ 6 When Kant talks about ends, he is talking about an aim or intention. When Steve the stockbroker works long hours, it’s because one of his ends is “making money”. The means he uses to pursue those ends is trading stocks on Wall Street. 7 Mary J. Gregory ed. Immanuel Kant. “Metaphysics of Morals” Practical Philosophy: The Cambridge Edition of the Works of Immanuel Kant. (New York: Cambridge 30

The Princeton Journal of Bioethics becomes a duty, which Kant further defines as “that action to which someone is bound”8. In other words, duties are actions one has an obligation to perform9. THE SEPARATION OF DUTIES Kant divided all duties into duties of right and duties of virtue. Duties of right are obligated actions which can be assigned to people by external law. Obligated actions of the duties of virtue cannot10. Duties of right specifically constrain a person’s ability to choose the means to his ends, using the categorical imperative in the form of universal law. Universal law states that we should act in a way so that the maxim (or rule) of our action can be consistent if willed to be universally adopted11. Although duties of right is an interesting topic that I wish to pursue in the future, this paper is focused on finding one’s duty to one’s health within the duties of virtue. Duties of virtue provide an end that is “objectively necessary, that is, an end that, as far as human beings are concerned, it is a duty to have”12. Duties of virtue are ends that we recognize through the power of reason as being not just worthwhile ends, but ends that we ought to put ourselves under the obligation of pursuing. Kant does not say this, but I believe he is referring to the categorical imperative in the form of the formula of humanity. The formula of humanity states that one must always treat humanity as an end and never merely as a means to an end. I believe that duties of virtue are, in effect, duties to follow the formula of humanity. Kant further divides duties of virtue into duties to oneself and duties to others, and perfect and imperfect duties. Duties to oneself are actions that one is bound to perform on behalf of oneself. Duties to others are actions that one is bound to perform on behalf of others. Perfect duties must be followed, while imperfect actions give one freedom to follow at one’s inclination. I will talk about perfect and imperfect duties later. As an example, Dylan the doctor might believe he has a duty to his employer (the Center for Disease Control) and to people in tuberculosis infected areas to treat their illness. He might also believe that he has a duty to himself to be the best doctor he can be. I claim that Dylan, every person he treats, and every other human being, has a duty to his or her own health. This duty must be a duty to oneself – it is certainly not a duty to others13. However, it is not entirely clear what it means to have a duty to one’s own health. Neither is it clear that duties to oneself actually exist. Morality has traditionally focused on how one ought to act towards others, but rarely does it focus on how one University Press 1996) 383. 8 Ibid. 377. 9 Duties contrast with inclinations, which are actions that one is moved to perform due to natural tendencies. Kant felt that only actions done out of a sense of duty were morally worthy. For instance, Kant thought that pursuing happiness was not a duty, but an inclination because naturally pursue their own happiness. 10 Ibid., 394. 11 Ibid., 73. 12 Ibid., 513. 13 One could argue that Dylan has a duty to others to maintain his health so that he can continue treating tuberculosis, but for the sake of this argument, I want to focus on Dylan’s inherent duty to his health that is owed to himself. 31

Vol. IX 2007 ought to act towards oneself. I shall proceed to examine the concept of duty to oneself. Do Duties to Oneself Exist? Generally, we think of duties as owed to other people. Carl has a duty to his employer to show up to work every day. He has this duty because he signed a contract with his boss when he started the job that he would show up everyday. This is how we generally conceive of a duty. Carl’s boss can decide, out of his own free choice and autonomy, that Carl needs a day off and release him from his duty to be at work. Carl’s duty to be at work no longer exists (for that day). However, if we assume that Carl has a duty to himself to watch a Grey’s Anatomy marathon, isn’t he also the owner of that duty? Here, things can become problematic. Can Carl also waive his duty to watch Grey’s Anatomy? If Carl can’t find the remote control and as a result does not watch Grey’s Anatomy, did he violate his duty or did he waive it? This paradox is what caused Kantian philosopher Marcus Singer to argue that duties to oneself cannot exist.14 When one has a duty to someone else, that person has a right over oneself, yet Singer argues that it is paradoxical to say that one has a right over oneself. Kant recognized the contradiction in the claim that one has a duty to oneself. He unsatisfactorily argues that by dividing a human sensible/natural being, and an intelligible/moral being. When we do this, Kant argues, we can find that this latter being is “regarded as a being that can be put under obligation and, indeed under obligation to himself (to the humanity in his own person)”15 Although one can argue that the intelligible/moral being acts always according to moral law, I am not convinced that this removes the problem of releasing oneself from obligation, A more elegant solution to the apparent contradiction of duties to oneself is presented by Margret Paton. She argues that Singer has overemphasized the contractual aspects of duties and sees “A has a duty to B” as equal to “B has a right over A”16. Paton argues that if we act solely out of regard for another’s right over us, our actions are robbed of moral worth. Instead she argues that we must act with a “single-minded love of the Moral Law” because Kant believed this would respect a person’s ability to make rational choices. This devotion, Paton claims, will lead us to develop a good will in ourselves. Therefore we are morally obligated to develop a good will and Paton believes this is an action we ought to do, in a non-contractual sense. The reason we ought to develop a good will is because it respects our value as rational beings and so this devotion to developing good will is a duty owed to oneself.17. To expand and clarify on this idea, I argue that this duty to ourselves is derived from the “formula of humanity” which Kant introduces in Groundwork of the Metaphys14 Marcus G. Singer “On Duties to Oneself” Ethics, Vol. 69, No. 3. (Apr., 1959), 202-205. 15 Mary J. Gregory ed.Immanuel Kant, “Metaphysics of Morals” Practical Philosophy: The Cambridge Edition of the Works of Immanuel Kant. (New York: Cambridge University Press, 1996), 544 16 As in B has a right to demand and possibly coerce the completion of said duty from A (my definition) 17 Margaret Paton “A Reconsideration of Kant’s Treatment of Duties to Oneself”. The Philosophical Quarterly, Vol. 40, No. 159. (Apr., 1990), 222-233. 32

The Princeton Journal of Bioethics ics of Morals, and that it specifically gives us a duty to ourselves. Consider the formula of humanity, which states that we ought never to treat a human being as only a means, but always as an end in himself. This categorical imperative creates the duty for one to always be treating all human beings as ends and not merely as means (AENAM)18. This means treating other human beings AENAM. But the set of people that is “all humans” is larger than the set of people that is “other people” because it is missing one person - the person whom the categorical imperative is directed at. Therefore, the full duty that one is given by the formula of humanity is to 1) treat all other humans AENAM and 2) to treat oneself AENAM. The first part of this duty is a duty to others, the second part of the duty is a duty to oneself. Therefore, duties to oneself can and do exist19. Duties One has to Oneself If we accept that duties to oneself can and do exist, then we must ask what these duties are. As we determined earlier, the overarching duty that we have to ourselves is to treat ourselves AENAM. This is a broad commandment, and a bit vague – but we can draw out specific examples from Kant’s work that can clarify this concept. Kant divides our duties to ourselves into two groups: perfect and imperfect20. He describes imperfect duties of virtue as being of wide obligation, in contrast to perfect duties of virtue, which are of narrow obligation. By wide obligation, Kant meant that a person’s own inclinations and reason play a role in the degree by which the duty is fulfilled. A narrow obligation, in contrast, is an action that must always be done, or always avoided. In terms of perfect duties to oneself, these duties constrain one from opposing it, or that one can never set as one’s end, the opposite of this perfect duty. Kant lists the perfect duties to oneself as: 1) Man’s duty to himself as an animal being, 2) Man’s duty to himself merely as a moral being, 3) The human being’s duty to himself as his own innate judge 4) Knowing oneself. Then he goes on to list human being’s imperfect duties to himself (with regard to his end) which include 1) a duty to develop and increase his natural perfection 2) a duty to increase his moral perfection21. Of these duties, Kant seems to care most about the duties of self-preservation and one’s natural perfection because he talks about both of them in earlier sections of his works. Suicide is an example of a violation of the categorical imperative - specifically 18 The example that is always given to illustrate this idea is lying. When Steve lies to another stockbroker in order to gain a profit, he is treating that other stockbroker as merely a means and not as an end. Obviously the other stockbroker would not agree to Steve treating him or her this way, and so this person is not contained in the end of this action. This makes that person merely a means to Steve’s end. 19 I find that other authors have come to similar conclusions: Lara Denis. “Kant’s Ethics and Duties to Oneself”. Pacific Philosophical Quarterly Vol 4, No 78 (1997), 321–348 – who says “Duties to oneself embody the requirement of the formula of humanity that agents respect rational nature in them-selves as well as in others. So understood, duties to oneself are not subject to the sorts of conceptual objections often raised against duties to oneself” 20 Mary J. Gregory ed.Immanuel Kant, “Metaphysics of Morals” Practical Philosophy: The Cambridge Edition of the Works of Immanuel Kant. (New York: Cambridge University Press, 1996) 521-525 21 Ibid., 546-567. 33

Vol. IX 2007 the formula of humanity, as described in the Groundwork of the Metaphysics of Morals. Perfection of oneself is named as one of the two ends that are also duties, (the other being the happiness of others)22. Of these duties to oneself, the ones I want to focus on are the duties of man to himself as an animal being, and man’s duty to develop and increase his natural perfection. I believe that exploring these two duties will bring us closer to an understanding of health as a duty to oneself. Self Preservation and Health Now we come to the core of my argument, which is that the duties that Kant sets forth in the Metaphysics of Morals include the duties of both nonmaleficence and beneficence. That is, they include both not damaging one’s health and cultivating it. These duties are found within the duties of self preservation and natural perfection. Kant states that preserving ourselves in our animal nature is our first and perfect duty to ourselves. As this is a perfect duty, Kant can only give examples of what one can’t do, including killing oneself or mutilating one’s body parts or organs. Later, he says specifically that selling a tooth to someone else or getting castrated to live a better life as a singer are all ways of partially murdering oneself.23 What Kant is saying is that it is not only wrong to harm one’s self, but it is also wrong to sell one’s organs or body parts for profit. This implies that kidney sales are wrong, as are sperm and egg sales These actions are wrong because by selling a kidney for money, we place our bodies on the same level as something like money, when in fact it is our bodies and lives that make money valuable. By exchanging our organs for money or other benefits, we are not preserving our animal nature and thus violating a perfect duty to ourselves.This is similar to the argument that David Vellman advances against suicide when he says that to kill oneself “solely for the sake of obtaining benefits is, in effect, to trade or exchange oneself for those benefits, and hence to treat one’s value as commensurable with theirs.”, This is wrong because benefits are only meaningful if one has inherent value as a human being24. Kant says we should value human beings because of their ability to make rational decisions, and as long as a person can make a rational choice, his value far exceeds that of money or any other material object – in fact, his ability to make rational choices allows him to create the value of money and pleasure. To phrase this in terms of the formula of humanity, one cannot treat oneself as merely means of acquiring money or other material benefits; one must also treat oneself as an end in oneself. Beyond this discussion of the moral culpability for trading self for benefits, I think that it is clear that self-preservation is related to health and thus we have a perfect duty not to kill, harm, or sell our bodies and body parts. Natural Perfection and Health The second duty that I believe is highly connected with health is the imperfect duty of natural perfection. The difference between perfect and imperfect duties is that 22 Ibid., p517. 23 Ibid., 546-567. 24 J. David Velleman. “A Right of Self-Termination?” Ethics, Vol. 109, No. 3. (Apr., 1999), 606-628. 34

The Princeton Journal of Bioethics perfect duties are duties that we must always follow, whereas imperfect duties are guided by our intuitions – they can only suggest maxims of action. Ultimately we have to use our ability to reason to decide how far to pursue these duties. Kant talks about natural perfection many times. He brings it up in the Groundwork of the Metaphysics of Morals in which he describes a man who decides to neglect his talents. Kant says that this is wrong because he could not will his maxim “never develop your talents if you don’t want to” as a universal law and he elaborates his reasoning in the Metaphysics of Morals. Kant says that pursuing one’s natural perfection is an end that is also a duty. He says that one’s own perfection is divided into two categories – material and formal perfection. To pursue material perfection is to cultivate natural faculties or natural predispositions, with understanding being the highest. To pursue formal perfection is to cultivate the will – the strength and accuracy of the mind’s power to obey moral law25. It makes sense that Kant would want people to cultivate their moral will, as he believed moral worth was derived from acting from a sense of duty. But it is unclear what he means by cultivating one’s “natural faculties”. However, I believe it is the key to extracting a duty to one’s health. Fortunately, Kant elaborates on his conception of natural perfection later in The Metaphysics of Morals by saying that it is the cultivation of any capacities for furthering ends set forth by reason. We recognize that what is valuable and good in a human being is his (keep the gender consistent throughout- he is more formal than she) ability to make rational choices, and both set ends and choose means to achieve those ends. Therefore, each person has a duty to cultivate his/her abilities to both set and achieve ends. Kant, therefore, concludes that the duty we have to ourselves to pursue our natural perfection gives us the maxim of action to “Cultivate your powers of mind and body so that they are fit to realize any ends you might encounter”26. This maxim of action alone is enough to place maintenance of health as a part of one’s duty to oneself. Health would be seen as a means to achieve an end – which is “realizing any ends you might encounter”. But is health only a means? Does this logic suggest that one’s health is just something to be used to achieve an end, and can be ignored when it is not needed? It might seem that way given the arguments above. However, there is more to the story. Kant then breaks down man’s natural powers into separations of spirit, mind and body. Powers of spirit are of reason and logic, while powers of soul include memory and imagination. But we are interested in powers of the body. Kant requires that we look after “the basic stuff” in a human being. He then tells us in short, that promoting our health is an end and a duty to oneself, when he states that “continuing and purposive invigoration of the animal in him is an end of a human being that is a duty to himself”27. Although promoting our health is useful in a practical sense, as it allows us to achieve our desired ends, it is also an end in itself, and it is a duty that we have to respect and obey.

25 Mary J. Gregory ed.Immanuel Kant, “Metaphysics of Morals” Practical Philosophy: The Cambridge Edition of the Works of Immanuel Kant. (New York: Cambridge University Press, 1996), 518. 26 Ibid., p523. 27 Ibid., p566. 35

Health as a Duty to Oneself

Vol. IX 2007

What I hope that I have done by this point is to demonstrate that maintaining or promoting health is also a duty to oneself. To say that one has a duty to one’s health is a more general way of describing the two different duties:, 1. We have a perfect duty not to destroy or sell our bodies and body parts 2. We have an imperfect duty to promote our health. By violating these rules, one violates moral law and suffers varying degrees of moral culpability. What does it mean to violate these rules, one may ask. The first rule seems simple – mutilating our organs or body parts is a violation of our duty. Commiting suicide is violation of our duty. Trading any part of our body for money or for pleasure is a violation of our duty. The second rule is a bit more subtle. It calls for people to examine how the actions they choose can impact their health. In a perfect world, this would mean people would be careful to choose actions that were not unnecessarily risky, eat foods known to improve health in moderate portions, perform exercises designed to increase their flexibility, aerobic and anaerobic fitness, and get proper rest and maintain friendships and social connections. As it is an imperfect duty, it is up to each person to decide how far he or she wishes to pursue these actions. However, these rules are not complete and I want to examine where they go against our intuition, and perhaps we can shape them into a more comprehensive theory. I foresee two problematic areas. The first problem I foresee has to do with the means of ends violating duties. The second deals with the risk of harm rather than actual harm. We will see examine these problems shortly. Now, let us see how our friends Carl, Steve, Melissa and Dylan stand on performing their duties to themselves regarding their health. Duties of Health

Four People

I would argue that Carl the couch potato does not fulfill his duty to his health in any way, and that his actions are morally culpable. He violates the first duty by hurting himself through lack of exercise and unhealthy diet. As I argued earlier, it is not enough for Carl to say that he values the cheesy goodness of nachos more than he values his body. Carl’s body’s ability to chew and swallow nachos is what allows nachos to be so good.. As for his duty to himself to promote his own health, we find that Carl has failed to comply. Carl is minimally28 developing his ability to achieve any ends he might encounter. With regard to imperfect duties, Kant said that fulfilling them was meritorious but failing to fulfill them did not indicate moral culpability, but merely lack of moral virtue29. If Carl, however, were to take upon principle, the non-development of his skills, 28 One can argue that every action develops one’s ability to something – perhaps Carl will call someone during his telemarketing shift and have a lively conversation about Grey’s Anatomy, allowing him to make a sale. However, this is a rather unlikely scenario and the certain costs ultimately outweigh the possible benefits. 29 Mary J. Gregory ed. Immanuel Kant, “Metaphysics of Morals” Practical Philosophy: The Cambridge Edition of the Works of Immanuel Kant. (New York: Cambridge University Press, 1996), 521. 36

The Princeton Journal of Bioethics he would be morally culpable. Because though imperfect duties allow us to decide how far we wish to pursue them, they do not allow us to set as an end, the opposite of the duty. To obey an imperfect duty, we still need to have it as an end. I would say that Steve the stock broker also fails to take care of his health and is thus morally culpable for his actions. He violates the first principle by selling his body for money, which is against the first duty he has to his health. He could choose to work for a less demanding firm that would require less hours and pay a lower salary. If this job was his only means of survival, or even his only means of a decent living, then his moral culpability would be lessened. But since he is clearly pursuing the job for the largely unnecessary salary, he treats his body as a means to achieve an end – money. This demeans his humanity because it is his body that creates the value of money. Thus his actions are wrong. Steve, however, is not necessarily failing to fulfill his second duty to his health. His job is technically difficult and he has learned many skills of reasoning and intuition about the market and met many people who could help him achieve other ends in the future. However, he has done harm to his body in the process. So it can be argued that Steve has furthered his ability to achieve his ends, if indeed the benefits of his job outweigh the detriments. Yet that seems contradictory to say, as Kant was always concerned with actions being right or wrong because they do or do not follow rules, while this analysis is looking at the consequences of actions. Means that Interfere with Ends Here I would like to introduce my first qualm with the duties to one’s health. Kant says that human beings have value because of their ability for rational choice – specifically their ability to set ends and choose means to achieve those ends. This is why natural perfection is a duty to oneself. But what if the means to achieve an end that one has set damages one’s body? This would violate the first duty to one’s health. Imagine that Steve has set as his end “Make as much money as possible”. And the means he has chosen to pursue this end is trading stocks for Fidelity Mutual. This means working long hours and having higher stress hormone levels – which is a general failure to perform his duty to his health. Does this make his end or his means wrong? I believe it depends on whether he is violating his first or second duty to his health. As long as Steve’s end is universally willable he is justified in undertaking it. If Steve is merely failing to promote his health (the second duty), he is justified in doing so as promoting health is an imperfect duty – as long as his end is not “to neglect my health”. However, if Steve is diagnosed with a stomach ulcer, he is now destroying his stomach and now he is violating his first duty to his health by damaging his body parts. As Steve’s first duty to his health is not to destroy his body parts, Steve must change his means of achieving the end of “making as much money as possible”. Means are only useful in that they help achieve ends, and if those means are violating duties, they are no longer useful. Now let us consider Melissa the mountain climber. I would argue that she is the least morally culpable in the sense that she violates her duty to her health the least (if at all). Unlike Carl and Steve, Melissa is actually in good health. She is developing her ability to achieve ends, at least physical ends, by training herself into a high level of physical fitness. She is certainly fulfilling her second duty to her health. 37

Vol. IX 2007 The Risk of Harm Melissa is, however, at risk for serious injury and possible death due to the inherent danger of her sport. Can we say that at the present moment, Melissa is obeying her first duty to her health? If she does hurt herself, she is no longer obeying her duty? Should her moral culpability depend on whether or not she ever actually gets hurt? The same question applies for Steve and Dylan. This is the second qualm I have with the duties to one’s health: Is there a difference in the moral culpability of actions that only risk harming one’s health, versus actions that are sure to harm one’s health? Kant himself realizes that this is an issue, as he brings it up in a section labeled “caustical questions”. He asks whether it is morally right to inoculate oneself against smallpox, as it allows for a possibility that one will develop smallpox and die, violating one’s duty not to kill oneself30. He unfortunately does not answer this question, leaving it for future philosophers to tackle. I argue that every action has a possibility of causing harm to our health; it is hard to imagine an action where the possibility of harming ourselves did not exist. Therefore, what we need to consider is whether necessary precautions were implemented before pursuing the action. If the necessary precautions have been taken, than the person has fulfilled their duty to promote their health when engaging in a risky activity. The worse the harm and the higher the risk, the greater the precautions that are taken need to be for the action to be morally acceptable. If Melissa wears all her safety gear, takes the proper training lessons, and familiarizes herself with the terrain before biking, I would argue that the risk she takes of hurting herself are morally justified. If she is reckless with her riding without regard to her health, she is morally culpable. In short, promoting health must always be one of her ends. This is my solution to Kant’s causitiscal question: if this vaccination has been tested and deemed safe for the general public, than yes. If this is a new, never been tested vaccine, probably not. Then the question becomes: “Is medical experimentation morally acceptable under Kantian philosophy?” This is a question I shall leave to a future philosopher. Sacrifice and Conflicting Means Finally, let us consider the situation of Dylan the doctor. Dylan is also putting himself at risk for catching tuberculosis by treating people with the disease. This puts him in the same position as Melissa. Is he morally culpable for putting his health at risk? Again, like Melissa, as long as Dylan takes the necessary precautions (face masks, sanitary precautions, etc) and keeps his own health as one of his ends as he does his work he is justified in pursuing his actions. However, what if Dylan decides to spend his meager funds on more tuberculosis medicine instead of protective equipment? He knows that by continuing to treat patients without the protection, he will contract a drug-resistant form of tuberculosis and die. Would Kant allow this? Although Kant claims to be universally against suicide, there are situations where he seems to allow self-sacrifice. One example he gives is of a person killing him30

Ibid., p548.

The Princeton Journal of Bioethics self in order to escape a life as a galley slave, which violates and denigrates his dignity as a rational and autonomous being even more than killing himself. As such, he is justified in doing so. The question is whether preventing someone else from a violating and denigrating their rationality (because of deliriousness or unbearable pain from illness) also justifies self-sacrifice. I would argue it does. There is no clear way of establishing which end or duty has greater priority. However, choosing to sacrifice oneself is what makes it justified, given that its end is to prevent a violation and denigration of human rationality. I argue that Dylan is justified in sacrificing himself to save his patients from violating and denigrating their rationality due to illness. However, imagine the disease does not destroy rationality, but merely causes loss of physical movement until death. Rationality is preserved until the end. Is his means of sacrificing himself to achieve his end still justified? I argue that it is important in this situation to examine what Dylan has undertaken as his end. There is a difference between having an end like “be the most famous tuberculosis doctor in the world”, or an end like “increase the health and happiness of the world” Pursuing either of these ends is causing him to violate his duty to preserve his health. When we are faced with a dilemma of two duties that cannot both be pursued due to the means, we must change the means. Dylan would need to change the way he treated his patients. If this were not possible, we would have to re-evaluate the ends by returning to the source of the duties, which for us is the formula of humanity. Although Dylan has a duty to the community, he has first a duty to his health. Remember that our duties to our health and ourselves, as well as our duties to the happiness of others are both derived from the formula of humanity, which states that we must treat all human beings AENAM. So we have to evaluate if Dylan is treating his body as “merely a means”. But it is not immediately clear what it means to treat oneself as a means. We understand what it means to treat someone else as merely a means because we simply are using them to achieve certain ends that they are not included in31. But if one aims to achieve one end, but then later is moved to achieve another end that is in conflict with the first end, then that one uses oneself merely as a means to achieve the second end. However this sounds silly, as one can always consent to actions one does to oneself. Can one really treat oneself as a means at all? Samuel Kerstein presents a solution to this problem by modifying our ideas of treating oneself as merely a means. He argues that we only treat ourselves as means if we choose to pursue an end that “thwarts an end that we are rationally compelled to have.”32 This allows us to rule out “inconsequential ends” like being the most famous doctor in the world. But again, what if Dylan’s end was to “promote the happiness of the world” or even “respect the rationality of all human beings”? This is a duty and an end that he would be rationally compelled to pursue, as is the duty to promote one’s health and not kill oneself.

31 Op. cite 17. 32 Samuel J. Kerstein Kant’s Virtue Ethics, Monika Betzler, ed. (Berlin: New York: de Gruyter) [forthcoming] 39

Vol. IX 2007 Conclusion In this paper I have tried to show that promoting one’s health is a duty one owes to oneself oneself. Kant himself establishes a number of duties, both perfect and imperfect, that we owe to ourselves. Using those duties I formulated two duties of health – the first being a perfect duty to not destroy or sell our bodies and body parts, the second being an imperfect duty to promote our health. Moral culpability is derived from violation of these two duties with two exceptions. In cases where one’s action risk harm to one’s health, as long as one has taken the necessary safety precautions, then one is not morally culpable in pursuing that action. If the means to a universally willable end violates the second, imperfect duty to health, one is justified in pursuing that end with those means. If the means to an end violate the first, perfect duty to health, than one must change the means to that end, or else give up that end. If these perfect duties of self-preservation, however, are placed against another rational duty, then it is up to the rational being herself to decide which duty she values more and wishes to pursue. I have tried to show in this paper that within a Kantian framework, there exists duties one has to not destroy oneself or one’s body parts and to promote one’s health. I believe that if this is true, there are interesting implications in how health care should be distributed and whether more care should be given to those who have followed their duty to their health. I shall pursue this idea further in the future.

Acknowledgements There are many people who have helped me in writing this paper that I would like to thank here. Professor Rob Reich and the class of “Ethics in Society Honors Thesis Seminar” class for clarifying my initial ideas and suggesting avenues for exploration. Professor Agniezska Jaworska for being my advisor, encouraging me to explore duties one has to one self and suggesting papers to read. Marion Gillion and Anping Shen for reading my paper and providing encouragement and suggestions. And finally the Myer Library 24-hr room for being there for me on those long, late nights and early mornings. May we all be dutiful to our health!

The Princeton Journal of Bioethics

Socioeconomic Privilege and Physician Assisted Suicide: A New Perspective Shira Billet Princeton University

The legal and ethical debates surrounding physician assisted suicide (PAS) and euthanasia ask at least two basic questions. How are we to understand “dying”? What constitutes a “good death”? But the PAS debate extends far beyond philosophical questions and goes to the very core of who we are as social beings. It reveals deeply seeded sociological norms and gives voice to moral, ethical and legal convictions. In this paper I will examine the attitudes of the average American with regard to PAS in the United States. The “average American” will be divided into his many manifestations, which vary by race, socioeconomic status (SES) and education level. I will first focus on what the average American says about PAS, through public opinion polls and academic studies. Then I will examine what he actually does when faced with personal end-of-life decisions. Some of the trends displayed by various social groups in their attitudes toward PAS will be highlighted and examined along the way with the purpose of seeing what social norms are reflected. I will discuss two theories which attempt to explain lower levels of support for PAS among African Americans and European Americans of low SES. One looks at cultural biases, and the other points toward inequalities in access to information. I will then propose a theory which is more comprehensive and takes the flaws of the first two theories into account: that the correlation between low SES and decreased support for PAS reflects divergent perceptions of social agency between the upper and lower socio-economic classes. Later, when you face old age and its natural conclusion your courage will still be shown in the little ways, each spring will be a sword you’ll sharpen, those you love will live in a fever of love, and you’ll bargain with the calendar and at the last moment when death opens the back door you’ll put on your carpet slippers and stride out.

-“Courage” Anne Sexton

What does it mean to meet death by striding out the back door in “carpet slippers”? Does this entail waiting for death to come naturally, and then accepting it in a dignified way? Or does this entail choosing the proper moment to stride out that backdoor? The legal and ethical debates surrounding physician assisted suicide (PAS) and euthanasia ask just these questions: how are we to understand “dying”? What constitutes a “good death”? But the PAS debate extends far beyond philosophical questions and goes to the very core of who we are as social beings. It reveals deeply seeded sociological norms and gives voice to moral, ethical and legal convictions. There are a few different approaches one might employ when examining PAS as a sociological phenomenon. One place to look would be at the dominant forces in the 41

Vol. IX 2007 debate—who advocates for PAS and who is against it? This would certainly provide valuable information about certain cultural attitudes of different groups in society. However, such a study would constitute an examination of the “rule-makers” who have the loudest voices, the most political presence, and the most knowledge about such end-of-life decisions. Instead, I would like to focus on the common individual in the United States. The “common person” will be divided into her many manifestations that vary by race, socioeconomic status (SES) and education level. I will first focus on what the common person says about PAS, through public opinion polls and academic studies. Then I will examine what he actually does when faced with personal end-of-life decisions. Some of the trends displayed by various social groups in their attitudes toward PAS will be highlighted and examined along the way with the purpose of seeing what social norms are reflected. I will discuss two theories which attempt to explain lower levels of support for PAS among African Americans and European Americans of low SES. One looks at cultural biases, and the other points toward inequalities in access to information. I will then propose a theory which is more comprehensive and takes the flaws of the first two theories into account: that the correlation between low SES and decreased support for PAS reflects divergent perceptions of social agency1 between the upper and lower socio-economic classes. In 2004, CBS conducted a national telephone poll which asked the question, “If a person has a disease that will ultimately destroy their mind or body and they want to take their own life, should a doctor be allowed to assist the person in taking their own life, or not?” Of 885 respondents, 46% gave a positive response while 45% responded negatively.2 Interestingly, the percentage of supporters of PAS in 2004 was much lower than it has been in CBS’s previous polls in 1998 (52%), 1993 (58%), and 1991 (53%). While an examination of the recent decreased support would be beyond the scope of this paper, it is interesting to note that it coincides historically with the success of the PAS movement such as with the Oregon Death with Dignity Act (1997), and more recently the legalization of PAS in Belgium (2002).3 Irrespective of the alleged decline, the percentage of supporters for PAS constitutes a majority (albeit small) of the respondents who gave a definitive answer, and reflects some significant general level of support extant in society. In 2003, researchers at the Northern Arizona University Social Research Library conducted a study concerning attitudes toward PAS after a bill was introduced into the Arizona state legislature proposing to legalize PAS.4 The study found that 57% of Arizonians believed PAS should be legalized, where 32% believed it should not. Although the Arizona poll is limited to Arizonians, one advantage it has over the CBS national poll is that it breaks down support for PAS into income brackets. The data show a proportional increase of support for PAS as income bracket increases, where 48% of respondents in the lowest income bracket and 66% of respondents in the highest income bracket supported PAS. While much can be learned from theoretical public support for PAS, it is even more informative to see not what people say, but what they do in practice. In this context, an interesting set of data arises from the Oregon State annual reports which follow up on the Oregonians who have utilized the PAS legislation. This report does not document 1 By “social agency” I mean the ability to control one’s life choices and outcomes in society. 2 “Poll: Physician Assisted Suicide.” CBS News. November 24, 2004. <http:// www.cbsnews.com/stories/2004/11/24/opinion/polls/main657617.shtml> 3 For a different perspective on the declining national support for PAS, see Smith. 4 “Physician Assisted Suicide Supported in Arizona” (2) 42

The Princeton Journal of Bioethics theoretical support for PAS, but actually describes those who actively participated in PAS since 1997, by race, level of education, and other factors not relevant to this paper. In terms of race, 97% of PAS patients were white, while 2% were Asian and none were African American. Although this data is of limited significance, since Oregon’s population is 86.6% white (mainly non-Hispanic), 3% Asian and 1.6% African American, it is still not proportionally representative of Oregon’s minority population.5 A more decisive set of information relates level of education to participation in PAS. Here, only 9% of those who engaged in PAS had less than high school education, while 41% were educated with a baccalaureate or more advanced degree. This compares with only 25% of all Oregonians who have a BA or higher degree.6 Although Oregon does not provide income bracket data, education is often a good measure of SES,7 and it would thus not be unrealistic to postulate that active participation in PAS increased with increased income,8 as the theoretical data from Arizona had indicated it might. The question arises of what to do with all this information. There seems to be much public support for PAS across the nation, but when this figure is broken down, we find that the significant numbers are coming predominately from highly educated, higher income groups, and more frequently from whites than non-whites. In fact, although the Oregon data does not confirm that African Americans have low support for PAS (since they are demographically underrepresented in Oregon), other studies have repeatedly reported this statistic.9 Victor Cicirelli conducted a study in which he interviewed a large sampling of older patients about their views on end-of-life issues, and concluded that “those who favored maintaining life no matter how dire the circumstances tended to be Black, to be of lower socioeconomic status (less education and lower occupational status)…”10 Therefore, we must ask ourselves: Is PAS a socio-economically privileged course of action? Just as we speak about “diseases of comfort,”11 must we also speak about “death of comfort”? This sort of outcome was certainly not what serious opponents of PAS had anticipated in the wake of the debates surrounding the Oregon legislation. In 1994, the New York State Task Force on Life and the Law published concerns about harmful outcomes to certain social groups if PAS were legalized: The risk of harm is greatest for the many individuals in our society whose autonomy and well-being are already compromised by poverty, lack of access to good medical care, advanced age, or membership in a stigmatized social group. The risk of legalizing assisted suicide and euthanasia for these individuals, in a healthcare system and society that cannot effectively protect against the impact of inadequate resources 5 US Census Bureau 6 Ibid 7 Liberatos, Link, and Kelsey 8 Wineberg and Werth 9 See “Culture and Ethnicity in Clinical Care”; see also Kwak et al. 10 Cicirelli 11 The term “diseases of comfort” was coined to describe the chronic diseases that have come to afflict more developed, “comfortable” societies, in contrast with the acute diseases and infections that are more prevalent in less developed societies. Obesity is a paradigmatic example of a “disease of comfort.” For an interesting perspective, see Choi et al. 43

Vol. IX 2007 and ingrained social disadvantages, would be extraordinary (124).12 What the New York Task Force expressed somewhat ambiguously was more clearly stated in 2003 by the European Association for Palliative Care. The EAPC’s report explicitly expressed the concern that if forms of PAS and euthanasia would become legalized, vulnerable members of society would be pressured to die, and that there would be an increased incidence of involuntary medicalized killings.13 Yet, what the Oregon data has shown is quite the opposite: The raw income, education and race data have indicated that vulnerable members of society are currently the least likely to die from legal PAS. Furthermore, Wineberg and Werth have documented that only 2% of those who requested prescriptions for PAS in Oregon were uninsured, and that 100% of the requesters were either enrolled in hospice care (80%) or had declined hospice care which had been offered to them (20%).14 It seems clear that the particular secular, social opposition to euthanasia expressed by the two task forces has not thus far been confirmed by reality and, if anything, has been disproved. If so, we must ask ourselves what went wrong in their line of thinking? Were they so out of touch with the current social reality? Based on the language used by the task forces and the concerns expressed, it is reasonable to assume that ideas relating to legalized PAS and euthanasia invoked in social memory the Nazi doctors who regularly practiced medicalized “mercy” killings of the underprivileged members of society under Nazi euthanasia legislation.15 The fearsome potential created when doctors are “licensed to kill” is no simple matter. Closer to home, the African American community still collectively recoils at the memory of the Tuskegee experiments, where medical licenses were abused to the great harm of innocent African American syphilitics. In fact, some interpret low support for PAS among African Americans as a result of collective mistrust of the medical field in light of phenomena such as Tuskegee. In this context, an AMA report cites other trends in the African American Community such as a strong belief that hospitals have profit motives, and a fear that they are at risk for having transplantable organs stolen.16 Cicirelli takes a different approach to the same issue, citing the history of African American persecution in the US not as a force which promotes their mistrust of the medical field, but which creates a culture of perseverance to maintain life in spite of terrible economic and social hardships.17 In either case, regardless of how African American history was interpreted, both approaches consider said history to be a valid lens through which to understand trends in African American views relating to PAS. One of the problems with this approach is that it is severely limited. Although it provides a possible explanation for the African-American trend, it does not explain why non-blacks of low SES and low levels of education have also been significantly opposed to PAS. Moreover, it does not explain why other minority groups have demonstrated less support for PAS than whites of higher SES. In a similar vein, although religious beliefs are often cited to explain trends in the PAS debate (as well as other end of life issues), this type of explanation does not sufficiently explain trends that fall along socioeconomic 12 13 14 15 16 17

Qtd. in Newman Materstvedt et al. (I was made aware of this Study by Newman). Wineberg and Werth Proctor “Culture and Ethnicity in Clinical Care” Cicirelli 44

The Princeton Journal of Bioethics lines. Wineberg and Werth posit a rather practical explanation for why poorer and less educated individuals are less represented in the Oregon data. They suggest that there is no inherent reason why the poor and uneducated should support PAS less than any others, but in a practical sense that are simply either less aware of the Oregon legislation, or they are less able to advocate for themselves in the process of seeking PAS, and to navigate through the medical system to find a willing physician.18 This explanation is quite reasonable, and it surely accounts for some of the cases of low income individuals who might have utilized the PAS law, but were unable to. However, this explanation is flawed as well because it does not explain the poll data which shows that people of lower SES, including but not limited to African Americans (a group not even represented in Oregon data), are more opposed to the legal establishment of PAS as a legitimate concept than those of higher SES. If we only had data documenting people’s actions, then the Wineberg and Werth explanation might be satisfactory, but since we also know that how people “think” (in response to direct questions) correlates well with the practical evidence, then an alternative explanation must be sought. Furthermore, although it is often true that different social groups have their own separate reasons for behaving and thinking in certain ways, it is rather likely that there exists some underlying common thread uniting all the groups that have higher levels of opposition to PAS, and lower rates of utilization of PAS. What unites racial minority groups (with a focus on African Americans), the poor, and those of lower levels of education? The obvious answer is that these different groups often overlap, and comprise what is generally known as low SES. Numerous studies have shown that there is a high correlation between general poverty and low education,19 and many members of minority groups (with the exception of Asian Americans) are likewise both poor and uneducated.20 There is also a high correlation between low SES and poor health outcomes, as well as high mortality and morbidity rates.21 Among the lower socioeconomic groups, sociologists have often found similar attitudes toward life. A recent study conducted by J. Wardle and A. Steptoe revealed a high correlation between low SES and a low perception of control over one’s health and life (i.e. social agency). This study showed that people of lower SES were more likely than their socially privileged counterparts to attribute many aspects of life to chance rather than personal formation of destinies, and to think very little about the future; they were less likely to have personal expectations of living past age 70.22 These data correlate well with general perceptions of the lower income bracket communities as compared with those of higher income bracket: People with low SES are more burdened with pressing concerns for basic survival on a regular basis. These stressful situations are compounded by fewer psychosocial resources for coping and adapting to tough situations.23,24 Individuals of low SES 18 Wineberg and Werth. Note that similar explanations are offered to explain the correlation between low SES and poor health outcomes. Link and Phelan, for example, argue that we must “contextualize risk factors” for diseases by considering who has access to information, who has time or money to go to the doctor, etc. 19 Liberatos et al. show this, and survey some of the other studies. 20 On the relationship between poverty, race, and health outcomes, see Williams; see also the website of the CDC Office of Minority Health. 21 Lantz et al. discuss SES and health outcomes; Williams discusses the correlation between race and low SES, alongside health outcomes. 22 Wardle and Steptoe. 23 Simon, Steptoe, and Wardle 24 Turner, Wheaton and Lloyd 45

Vol. IX 2007 have less time for leisurely activities, less time to read, and are less likely to read even if given the time; they have less time for contemplating life in a deeper way.25 People with low SES have more chronic illnesses, but less flexibility for making the requisite lifestyle changes that their doctors recommend for improved health,26 that is, if they can even get treatment at all.27 In short, people of low SES spend much of their lives to an extent propelled by the whims of others more privileged and powerful than they—bosses, healthcare providers, government officials. Conversely, people of higher SES are more likely to be treated for illnesses at early stages,28 and are generally less afflicted by the chronic conditions, such as obesity and tobacco-related ailments, that have become leading causes of death in the US.29 They have more job security, and greater ability to leave an unhappy work situation for a better one. In short, people of higher SES are more likely to feel a sense of social agency in their lives under normal, daily circumstances, than those with low SES. Perceptions of social agency seem to be extremely important considerations in many of the PAS debates. In 1998, Sullivan and colleagues reflected on the second year after the Oregon legislation was implemented that those who had died by PAS were frequently described by their families as having been most concerned about loss of bodily control and physical and mental autonomy.30 In 2002, Wineberg and Werth showed that concerns about loss of autonomy seems to have remained the biggest issue for the Oregon PAS patients, in contrast with the reasonable expectation that unbearable pain would have been the decisive factor.31 If personal control and autonomy are truly the most important factors influencing one’s beliefs about PAS and one’s desire to engage in PAS, then perhaps the social disparities between proponents and opponents of PAS should be considered in this light. Who is most worried about autonomy, and who is most afraid of losing it? Surely, those who lead lives with greater sense of individual control will have a greater fear of losing that control. Surely those who are more likely to believe that the future is a product of chance rather than personal initiative are less likely to take personal initiatives to control that future. And finally, who has the “privilege” of rejecting life support and rejecting life when it becomes unbearable by personal standards? Who has the privilege of fighting for a right to die? Surely those who have had access to healthcare their entire lives, and who take it for granted in many ways, will also take for granted their right to dispose of it. Those who have struggled to obtain medical care will be less inclined to feel that it is something that can be given up when complex end of life issues arise. 25 As indicated by Wardle and Steptoe 26 Lantz et al.; Link and Phelan 27 In 2005, the New York Times published a series of articles (Class Matters) on the effects of social class in American society. In “Life at the Top in American Isn’t Just Better, It’s Longer,” Janny Scott followed the heart attacks of 3 Americans from different socioeconomic statuses. According to Scott, “class informed everything from the circumstances of their heart attacks to the emergency care each received, the households they returned to and the jobs they hoped to resume. It shaped their understanding of their illness, the support they got from their families, their relationships with their doctors. It helped define their ability to change their lives and shaped their odds of getting better.” 28 Scott 29 Mokdad et al.; also Rogot, Sorlie, and Johnson. 30 Sullivan, Hedberg and Fleming 31 Wineberg and Werth 46

The Princeton Journal of Bioethics Thus, to bring this discussion to a near full circle, I would like to assert that in a sense, we must think about the concept of â&#x20AC;&#x153;death of comfort,â&#x20AC;? and we must follow the data in thinking about the PAS debates as sociological phenomena which reveal the privilege of those in higher socio-economic classes to view death in a certain way. It is a social privilege to have so much control over life that death too becomes a concept to think about in terms of choice. There can be no other way to account for the fact that consistently, across cultures, those of low SES have been less likely to support and engage in PAS in the United States. To be sure, other hypotheses to account for the data cannot be disregarded. There can be no doubt that African American views of the medical field are influenced by Tuskegee and other disturbing relics from the era of medical paternalism. Religious beliefs must be factors in end of life decision making as well. Furthermore, it is surely true that the less educated have less ability to navigate through complicated red tape surrounding PAS. Nevertheless, if we are to account for the data we must extend beyond the African American community, and beyond practical inhibiting factors experienced by poorer individuals in Oregon, to look at underlying sociological features experienced commonly by low SES communities across the board.

Vol. IX 2007

Rigging the Natural Lottery: Questions of Genetic Modification and Rawlsian Justice Christopher Simpson Stanford University

“The natural distribution is neither just nor unjust... These are simply natural facts. What is just and unjust is the way that institutions deal with these facts.”1 This excerpt from A Theory of Justice expresses a crucial assumption about the domain of justice. Under this view, it is not a concern of justice to “deal with” the distribution of natural assets. This position is quite natural. Indeed, for most of human history, we have possessed only relatively crude methods to control our natural assets. It could not be a demand of justice to perform the impossible (or so a major tenet of some moral thinking claims), and so Rawls speaks properly of a distinction between the realm of our assets, as things handed to us by fate, and the realm of justice, as something which falls within our control. However, our new understanding of the genetic basis of “natural” assets threatens to overturn this historical truth about the difficulty of controlling, with much specificity, their distribution across humankind. Of course, it might be objected that this interpretation misuses the word “nature.” Indeed, how can natural assets still be regarded as natural if they are subject to human control? Would it not be more appropriate to say that human knowledge, in the form of biological self-understanding, threatens to overturn the historical boundaries of what is natural and what is not – that by pressing these frontiers, we essentially chip away at what was once called our “nature?” 1 John Rawls, A Theory of Justice, Rev. ed. Cambridge, Mass: Belknap P of Harvard Univeristy P, 1999, 87. 48

The Princeton Journal of Bioethics Indeed, this thought is consistent with many of our intuitions about wherein “nature” consists. The skies above are variously cursed and celebrated, not because their violence or beauty is the intentional work of human beings, but precisely for the opposite reason: they are out of our control. The title of “nature” is bestowed upon the skies, and upon our inborn assets, largely for this reason. In this way, nature can be thought of as that part of our humanity which we cannot decide for ourselves. Therefore, even though the term “nature” is ubiquitous in the literature regarding genetic modification, I wish to stress that it is not our “nature” – whatever that may be – with which genetic modification aspires to tamper. For this reason, I will refer to genetic assets as exactly that – “genetic” assets – but I will not speak of modifying “natural” assets. Let us agree, then, for the sake of clarity, that it is apparently a tendency of man to be discontented with the facts of yesterday’s nature. Many genetic assets, yesterday’s unchangeable truths, are today obstacles that some people wish to overcome. Once these previously unchangeable truths slip into the category of real possibilities, they become the subjects of justice, and are just as properly discussed under Rawlsian theory as more traditional subjects, like tax systems or foreign aid. This paper will not deal with the predicted extent of the coming powers to control the distribution of genetic assets. Rather, we shall make the plausible, but not certain, assumption that someday we will have powers of this kind. The purpose of this paper is to survey the implications that such powers would have for Rawlsian justice. Could it be an obligation of Rawlsian justice to “rig” the genetic lottery in some way? Some kind of obligation in this direction seems highly plausible. For example, our intuitions tell us that rigging the genetic lottery to prevent a person from being born with a fatal birth defect might be a reasonable or even required action. Can Rawlsian theory give an account of how these powers should be used that is both principled and palatable to our intuitions? What is Meant by Genetic Modification This paper understands genetic modification as a service for individuals. Individuals are understood as receiving this service through a market system, subject to government regulations. The principles to be discussed in this paper are, therefore, to be understood as guides for designing these regulations. The possible content of the service is limited only by a society’s biotechnological capabilities. The service is for individuals in two senses: 1) individuals can use it to select genetic assets for their offspring, and, 2) individuals can use it to modify their own genetic assets. The first sense is a more immediate possibility than the second. It represents what we might reasonably expect from our genetic powers in the near future. The second sense is a more distant possibility, but certainly worth considering because it has great appeal to many people. Indeed, dreams of the second sense of the service are often what fuel research for the first, more immediate, sense. In some ways, the understanding of genetic modification that I have chosen is a best-case scenario. If we were to imagine instead, say, that genetic modification were controlled at the level of the government, with certain classes of people intentionally bred for specific projects in their society, we might have many additional objections. But these might not be objections against modification per se, but rather objections against particular uses of it, or how it is controlled. I do not wish to downplay these objections. In fact, many of them are perhaps the strongest reasons against pursuing genetic modification. But by assuming, for the purposes of argument, that the future use of genetic modification will be relatively free from coercion by government (or any other force), we are left with a more 49

Vol. IX 2007 refined understanding of our objections against it.2 Could Modification Be A Basic Liberty? Rawls’ first principle reads: “each person is to have an equal right to the most extensive scheme of equal basic liberties compatible with a similar scheme of liberties for others.”3This principle, I claim, should not be understood to protect genetic modification as a basic liberty. Nor should a right to genetic modification be included under a larger category of supposed basic liberties (say, a right to “self-determination” or an inviolability of the body). To see why, we should suppose that it were a basic liberty and then survey the possible consequences for human society. If these consequences are judged unacceptable in a state of reflective equilibrium, then we can discard the liberty. In some ways, of course, it is nonsensical on the face of it to claim that there could be a “basic” liberty of access to genetic modification: how could a supposedly “basic” liberty be contingent on living in a sufficiently advanced society? The traditional “basic” liberties according to Rawls (political liberty, liberty of conscience, and others) are practical possibilities in any society.4 Their satisfaction does not depend on living in a society with a high level of technical capability. The same cannot be said for a “basic” liberty of access to genetic modification. There is still a sense, however, in which the word “liberty,” and even the word “basic,” is apt. Nowadays, it is often said that access to health care is or ought to be a “basic” liberty for individuals. This same claim would have been nonsensical in the Middle Ages, when there was (relative to today’s standards, at least) no health care to be had. Now, however, the claim is considered much more credible. Clearly, what we regard as a “basic” liberty is linked to the material facts of our society. Thus, a supposed “basic” liberty of access to genetic modification can be restated in the following way: given that institutions are in place which make genetic modification possible, it is a basic liberty to have access to these institutions; this access is to be free from interference, since individuals, it is supposed, have a right to determine their own path of life. Let us examine why such a basic liberty would be problematic. We should begin by noting that a liberty to determine the genetic assets of oneself, or of one’s offspring, would have profound and unpredictable effects on the future of human society. With this in mind, we now consider two arguments for why such a basic liberty would not be adopted. The first argument is “practical” in nature; it is premised on the understanding that societies never fully satisfy whatever principles of justice they adopt. The second argument is a more vague and speculative philosophical worry. Two Arguments Against Modification As A Basic Liberty In Rawlsian theory, it is the task of the parties in the original position to agree upon a set of principles that will govern the operation of the society in which they (and their off2 Jonathan Glover, in What Sort of People Should There Be?, stresses the importance of detaching our concerns about radical technologies. The result is an interesting moral analysis of many kinds of radical possible technologies. Jonathan Glover, What Sort of People Should There Be, New York, N.Y., U.S.A: Penguin, 1984. 3 Rawls, 53. 4 Rawls, 53. 50

The Princeton Journal of Bioethics spring, in future generations) will live. Importantly, the parties reject principles which tend to create intolerable states at the low end of the spectrum of expectations. As Rawls puts it, “to acquiesce in an enduring loss” for the good of society is unacceptable to the parties.5 With this distaste for intolerable states in mind, it becomes more apparent why a liberty to “determine one’s self,” as it were, through genetic modification would not be accepted in the original position. First, there is the inescapable practical possibility that the already-advantaged members of society would use such a liberty to perpetuate their advantage. Indeed, this is the most urgent threat to justice posed by the upcoming generation of genetic modification technologies: wealthy individuals will have greatly disproportionate access to their benefits. In the worst-case scenario – a truly dystopian vision – economic classes could be stratified into biological subpopulations because of differential access to the technologies. Certainly, those individuals relegated to the lower subpopulations because of their inability to afford the superior genetic modifications would have suffered “an enduring loss,” to use Rawls’ words. Granted, this kind of scenario would never come into existence in a society that perfectly satisfies Rawlsian principles. If the parties in the original position are to be viewed as choosing principles for an ideal society in which they know they will live, then the argument is groundless. However, this is not the case. The parties in the original position, though they are building a set of ideal principles, cannot reasonably expect to live in a society that perfectly fulfills them. Consequently, it matters to them how they would fare in a non-ideal society. And if access to genetic modifications through a free market were considered a basic liberty under the first principle, then, in a non-ideal society, fulfilling neither of Rawls’ principles, advantaged members might exploit their advantage in the name of (their own) liberty. The second worry is that the parties in the original position would be faced with radical uncertainty regarding the consequences of accepting a basic liberty of this kind. It would be impossible for the parties to survey the eventual impact of such a liberty on human society. It is possible that such a liberty, open to individuals in each generation, would eventually radically alter some of the fundamental aspects of humankind – possibly even the ability to form a conception of justice, as we currently conceive of it – that are required for the deliberations in the original position to even occur. The point here is that, importantly, none of the traditional basic liberties agreed to by the parties in the original position have the potential to modify humankind in the way that this proposed liberty would. There is no risk that a liberty of conscience, say, would transform humankind into something utterly different from what it is now. A certain degree of similarity between present and future human generations is, I think, in the interest of the parties in the original position, if only to ensure that future generations never lose the features of their humanity which make the judgments in the original position compelling.6 5 Rawls, 13. 6 Although it is true that Rawls conceives of the parties as concerned for future generations only indirectly (through overlapping concern for their offspring, and their offspring’s offspring, etc.), I think that the value of the original position would be compromised if it were understood as permitting the parties to choose principles that would make future deliberation about justice irrelevant. This is the concern, albeit highly speculative, that is presented here. A race of humans with particularly bold aspirations for genetic modification could incrementally make themselves into a race of non-humans – or even, a 51

Vol. IX 2007 The “Normal Competitor” Ideal So far, we have considered the proposal that genetic modification should be worked into the first principle, under the heading of a basic liberty. This proposal was rejected. We now consider the view, which some authors suggest, that manipulation of the genetic lottery should be incorporated into the second principle, as a tool to promote equality of opportunity. On this view, it would be justified to manipulate the genetic lottery if the purpose is to ensure that all people have the basic advantages needed to become “normal competitors in social cooperation.”7 Rawls would probably dislike the term “competitor” as the goal to which equality of opportunity aspires. Indeed, this goal has a fundamental failing that can be seen in the following way: suppose our society tries very hard to provide the advantages needed for all people to become “normal competitors in social cooperation.” Suppose, further, that people make good efforts, given these advantages, to actually become “normal competitors in social cooperation.” But if the criteria for becoming a “normal competitor” include possessing any kind of relative advantage over others – a fairly noncontroversial assumption for most understandings of competition – then the goal of providing everyone with the opportunity to become “normal competitors” would be unattainable. The bar representing “normal” would be constantly rising. An improved view, and one that Rawls would probably prefer, regards the promotion of the social primary goods, especially self-respect, as the primary reasons for genetic interventions. Primary goods are those things that any rational person wants, no matter what else she also wants. Rawls makes a distinction between natural primary goods (such as “health and vigor, intelligence and imagination”) and social primary goods (such as “rights, liberties, and opportunities, and income and wealth”).8 One primary good that Rawls sees as particularly important is self-respect. He considers it “perhaps the most important primary good” and explains why: “Without it nothing may seem worth doing, or if some things have value for us, we lack the will to strive for them. All desire and activity becomes empty and vain, and we sink to apathy and cynicism.”9 Now, it is clear that many genetically-influenced assets can have the effect of injuring an individual’s sense of self-respect. If these injuries are made “preventable” by genetic modification, there seems to be some support in Rawls, then, for some kind of intervention. The Reformed Difference Principle Whether the goal is to promote “normal competition” or the social primary goods, in any case we need a method of achieving this. One suggestion proceeds as follows: in the same way that Rawls allows for inequalities in wealth, so long as they are subject to the Difrace of creatures for whom the concept of justice did not apply. But the goal of Rawlsian theory, as I see it, is never to transcend justice (by making ourselves into creatures unsuited for it) but rather to constantly face the demands of it. 7 Allen E. Buchanan, From Chance to Choice Genetics and Justice, New York: Cambridge UP, 2000, 74 8 Buchanan 54. 9 Rawls 386. 52

The Princeton Journal of Bioethics ference Principle to ensure that they are to the benefit of all, we should also allow inequalities in genetic endowments, so long as they, too, are subject to the Difference Principle for the same reason. The reformed Difference Principle would read: “social, economic, and genetic inequalities are to be arranged so that they are to the greatest benefit of the least advantaged.” Indeed, Rawls lends (what seems like) support to this idea when he writes that “it is not in general to the advantage of the less fortunate to propose policies which reduce the talents of others. Instead, by accepting the Difference Principle, they view the greater abilities as a social asset to be used for the common advantage.”10 Rawls’ view here should be elaborated. In this passage, he is writing in response to the (somewhat fantastical) possibility that societies might adopt eugenics policies aimed at equalizing the distribution of genetic assets, even by reducing the talents of the most talented. Rawls finds such policies uniformly unacceptable, as when he writes that “the more advantaged have a right to their natural assets, as does everyone else; this right is covered by the first principle under the basic liberty protecting the integrity of the person.”11 Implications for Diversity Let us now consider the possible implications of the “reformed Difference Principle.” Suppose, hypothetically, that there were some genetic assets which were almost universally regarded as primary goods, which we had some reasonable way of measuring, and which we could reliably manipulate. And suppose we made their distribution conform to the reformed Difference Principle. How would this distribution differ from one that conformed only to the original Difference Principle? On one picture, remarkably little change would occur because very few genetic assets would be agreed upon as good, no matter what else a person wants. But on pictures that appreciate the presence of nearly universally-valued assets (like health and beauty), the result could be a radical kind of natural equality. In short, we cannot predict what distribution of genetic assets would be arrived at many generations in the future, because there are many reasonable ways of understanding the extent to which people would agree about the value of many assets. If the suggestion of subjecting the distribution of genetic assets to the Difference Principle is to be accepted, then, it must have consequences that we can tolerate under all reasonable understandings of value pluralism. This is where we confront problems that we do not encounter when the primary good under consideration is, say, money. Unlike “diversity” in the distribution of money (that is, economic disparities), there may be something intrinsic to diversity of genetic assets – including human form, talent, and ability – that is itself a social good of the highest rank. Herein lies the problem for the claim that both money and genetic assets – even those for which there are clear ways of measuring their value – are to be dealt with in the same way. One way to deflect these concerns is to deny that diversity of the features we value would really be threatened under the reformed Difference Principle. To understand this argument, it is important to realize that genes very rarely underlie specific talents. (This is a contrast to the role genes often play in underlying specific diseases.) It is almost certain, for example, that there is no “gene for electric guitar-playing.” What is more likely, instead, is that there is a gene (or a collection of genes) that underlies the general capacities needed 10 11

Rawls 92. Rawls 89.

Vol. IX 2007 for success at electric guitar-playing. But these capacities very likely underlie a number of other talents, too. Which talents end up being pursued and cultivated, and which ones are left untapped, is something that remains at the discretion of the individual possessing these genetically-based capacities. But it is specific talents and interests, and not general capacities and inclinations, that make a community diverse in the sense that matters to us. Broader Implications of the Reformed Difference Principle Concerns (or lack of concerns) about diversity are, however, arguably not the most urgent moral issues to arise from the reformed Difference Principle. There are other possible implications of the principle that might, from a moral standpoint, dwarf any concerns we might have about upsetting diversity per se. This line of thought contains a number of important objections to any principles that would permit or require broad usage of genetic modification. And Rawls’ Difference Principle, when expanded to bear upon the genetic distribution, is certainly one such principle. Indeed, there is no doubt that the original Difference Principle is, in itself, highly egalitarian.12 And there is strong reason to believe that the reformed Difference Principle would be similarly egalitarian. (As noted before, inequalities in genetically-influenced assets have the potential to undermine self-respect, the paramount social primary good for Rawls.) But, clearly, insofar as the principle demands equality, it would also necessitate broad usage of genetic modification. Indeed, there are features of the nature of genetics that conspire to make this so. Most notably, because we are unified as a species through a common genetic language, any technological breakthrough in genetic modification is in principle a possibility for any future human. Worries of technical obstacles to equal access are, therefore, particularly misplaced in this discussion. And while economic obstacles might initially limit the feasible availability of the service, if the service were truly to be governed by Rawlsian principles, then we would expect the resources of society to be rapidly directed at overcoming these obstacles. So, the concern that substantial inequalities in genetic assets might be necessitated by the reformed Difference Principle is, on the whole, not tremendously convincing. If it were suggested that, for example, we might be obligated to enhance intelligence among a segment of the population, in order to better understand and solve social problems and, thereby, benefit the least well-off, then it must also be explained why this enhancement should not (or could not) be extended to the least well-off themselves. If technical and economic obstacles do not factor into the explanation, then what can? In this case, it would seem a grave injustice to arbitrarily deny an “intelligence enhancement” – especially one so powerful that it bears such fruits as the solution of previously insoluble social problems. So, it seems that the reformed Difference Principle would require broad genetic intervention that goes beyond the merely remedial (for example, disease prevention). It would extend into the positive enhancement of our abilities. But some authors, like Michael Sandel, express concern that a society with ambitious aspirations to genetic modification could be, essentially, living in an unhealthy state of denial of its own limitations. It is argu12 Rawls explicitly recognizes his principles as strongly egalitarian, as when he writes: “While there are many forms of equality, and egalitarianism admits of degrees, there are conceptions of justice that are recognizably egalitarian, even though significant disparities are permitted. The two principles of justice fall, I assume, under this heading” (471). 54

The Princeton Journal of Bioethics ably a very hubristic society that sees itself as fundamentally its own maker. Such a society could easily be instilled with attitudes that fail to foster an “openness to the unbidden.”13 But such an openness – an embrace of the unavoidable pitfalls and fortunes of life – is arguably a very important virtue for any society. Sandel characterizes the aspiration for broad genetic modification as symptomatic of a tendency to “rail against the given” and calls this phenomenon the “deepest source of moral trouble with enhancement.”14 These concerns cannot easily be assuaged if the reformed Difference Principle, or anything similar to it, is to guide the use of genetic modification. Conclusion What remains to be done is to establish a fuller, positive account of how powers of genetic modification should be used. Pointing out the moral quandaries that arise from the existing positive accounts is the relatively easy task. The pressing task, now, is to rework our theories of justice to explicitly handle questions of genetic modification. Within Rawlsian theory, the idea of subjecting the distribution of genetic assets to the Difference Principle is a good effort in this direction. But perhaps this simple account needs to be modified to accommodate the criticisms raised in the final sections. Granted, theses concerns are far from the only problems that could arise from the practice of genetic modification. A society guided by Rawlsian principles might fare relatively well with respect to the other problems. Nonetheless, Rawlsian theory, in its original statement, seems to be inadequate for guiding the research and use of genetic modification. Rawlsian principles seem to give us mixed imperatives: on the one hand, to support liberal modification in the name of the Difference Principle; and on the other hand, to resist this liberal modification if we somehow find the results deeply unpalatable, as may well be the case.

13 Michael J. Sandel, “The Case Against Perfection: What’s Wrong with Designer Children, Bionic Athletes, and Genetic Engineering,” Atlantic Monthly 293. (2004): 5062. 14 Rawls 58. 55

Vol. IX 2007

The Differences between Medical and Behavioral Genetics Molly Rapoport Danielle Gong Morgan Goheen Princeton University

In this paper, I explore whether and how John Rawls’ theory of justice can give guidelines for the development and use of genetic modification technologies. I argue that radical possible technologies, like human genetic modification, pose especially challenging questions for Rawlsian theory because their effect is to directly intervene into what Rawls calls the “natural lottery.” This is important because the natural lottery is understood by Rawls as something that we are unable to change. It is assumed to be “given” to us, as though by fate. Rawlsian principles in their original statement are, therefore, indeterminate on questions of our possible obligations to “rig” the natural lottery in certain ways – for example, against debilitating birth defects, or for certain desired traits. I will consider a number of ways that Rawlsian theory can be modified to inform us of our obligations in these matters. In particular, I will argue that genetic modification should not be protected under Rawls’ first principle as a basic liberty. In addition, I will consider the suggestion that the distribution of genetics assets should, ideally, be made to conform to the Difference Principle – that is, that inequalities in genetic assets are “justified” only if they are to the benefit of all. Finally, I will survey the implications that this principle might have for a society that conforms to it. Introduction Following World War II and the Nazis’ use of ‘eugenics’ in an attempt to create a ‘superior’ Aryan race, the use of the term ‘genetics’ has become much more prevalent. Many categories of genetics exist, including human, animal, medical, and behavioral genetics. This paper will focus on the differences between medical and behavioral genetics. While medical genetics encompasses only the applications of genetics in medicine, most popularized in the form of gene therapy, behavioral genetics represents broad research aimed toward understanding how genetic variation leads to behavioral differences.1 Though some divisions exist between these two subcategories of genetics, their boundaries are far from distinct. Still, these terms often solicit very different connotations. As we emerge into a new age of scientific possibilities, especially in relation to altering the human gene pool, our population must try to understand what practices we find acceptable. Therefore, examining the differences between behavioral and medical genetics becomes important. Medical Genetics Definitions and Distinctions Medical genetics studies the effects that genes have on traits associated with medical conditions. Conversely, behavioral genetics studies the effects that genes have on 1 E Parens, “Genetic Differences and Human Identities,” Hasting Center Report Special (2004): s1-s36. 56

The Princeton Journal of Bioethics traits associated with mental psychology and behavior. Medical and behavioral genetics essentially represent genetic technology as applied to the medical profession and the psychiatric profession, respectively.2 In contrast to the focus in behavioral genetics on trying to understand why people exhibit different traits, medical genetics might be construed to center more on norms and standards for a population’s genes.3 Typical examples of phenotypes addressed by medical genetics might include cancer, heart disease, and cystic fibrosis. Despite association of medical genetics with fairly well-defined disease alleles, the reality is that medical genetics, like behavioral genetics, is very complex and often deals with multiple factors and genetic determinants. In fact, the single gene/single phenotype scenario, exemplified by Huntington’s disease, is extremely rare.4 While the interactions between disease and genetics are often oversimplified, medical genetics seeks to tease apart the multiple genetic factors that can lead to fatal or extremely harmful diseases. Medical genetics thus employs genetic technology for use in disease prevention, identification, and treatment. It may involve genetic screening for certain diseases, genetic genotyping to reveal parentage or gross chromosomal abnormalities, or treatment planning for inherited diseases. Also included in the field of medical genetics are the many tests and procedures associated with procreation. Amniocentesis and other prenatal genetic screening techniques, in addition to the embryo selection and repair processes associated with assisted reproduction, are included in the field of medical genetics. With in vitro fertilization, medical genetics in the future may also come to include the identification and removal of certain disease-causing genes in the embryonic stage. Technologies Employed Gene modification by medical genetics techniques comes in two forms: germ line and somatic cell5 manipulation. Human germ line engineering for medical purposes involves the alteration of germinal epithelium, sperm or eggs, or early embryos, such that genetic changes become permanently encoded in the embryo’s genome. Germ line engineering has been accomplished in animal models and may soon be possible in humans. Such technology would enable scientists to correct genetic defects, such as gross chromosomal abnormalities, and prevent certain associated diseases from being passed on to the next generation. This implies that by correcting genetic defects before an egg and a sperm fuse to form embryos, the need for prenatal testing could potentially be eliminated. It would also allow humans to control selection for desirable traits and selection against deleterious or undesirable qualities.6 Germ line changes can be produced by one of three techniques: 1) the direct injection of specific DNA sequences into an early embryo; 2) manipulation of embryonic stem cells directly or by use of a vector7; or 3) the use of 2 Parens 6. 3 Parens 5. 4 Parens 18. 5 Somatic cells are all cells that compose a person’s body except reproductive tissues. Reproductive tissues, such as ova/eggs and sperm, are considered germ line cells. 6 M. Lappé, Helga Kuhse, and Peter Singer, eds., “Ethical Issues in Manipulating the Human Germ Line,” Bioethics an Anthology, Malden, Mass: Blackwell, 1999, 155164. 7 vectors are devices (organic) that are used to carry genetic material into cells 57

Vol. IX 2007 retroviruses to carry DNA into an early embryo.8 Conversely, somatic medical genetics involves the manipulation of somatic cells to treat and or cure a fatal disease in a single individual. In theory, because the genetic manipulations involve adult somatic cells and not gametes, the genetic alterations are not heritable. However, an early genetic change made to an embryo can hypothetically be incorporated into both its somatic cells and its germ line, causing the changes to affect a mixture of both germ line and somatic cells.9 Pre-implantation genetic diagnosis (PGD) allows parents to choose which embryos produced by in vitro fertilization to implant, based on their genetic profiles. PGD allows parents to know the sex of each embryo and screen for variations in thousands of different genes. Because alleles coding for various traits and diseases can be identified, it is possible to screen for their presence or absence within a given embryo. A technique known as polymerase-chain-reaction (PCR) is used to amplify specific DNA sequences to allow for easier identification and analysis. Determining which alleles are present in a given embryo promotes selection of particular embryos for implantation into the uterus. However, the technology is limited by the number of eggs that can be removed from a woman at a given time (~ 12). Additionally, the success rate for retrieving genetic information on a single gene is only 90%. Furthermore, the success rate of implantation is still less than 50%. Efficiency in obtaining genetic information, screening genes, and implanting embryos must increase before PGD can be widely useful in medical genetics. Parents must also recognize the limitations of genetics, as environment crucially affects many traits, including some diseases.10 Concerns Many people might consider the field of medical genetics to be less disconcerting than behavioral genetics, given the familiar association with doctors and healing. However, novel applications of medical genetics (including the technologies discussed above), and the possibility of altering the gene pool, causes us to question whether medical genetics falls under the category of prevention or enhancement. People have typically favored the use of technology to prevent diseases by correcting genetic defects because alleviating suffering whenever possible is seen as a moral duty. Yet, the alteration of germ cells brings forth a new moral question dealing with intergenerational moral responsibilities.11 Medical genetics can quickly turn into an alleged means of “eugenics” if genetic alterations begin to encompass traits not strictly related to disease or medical conditions (such as intelligence or athletic ability.) It is difficult to define disability and draw a line between medical and pleasurable genetic treatments. Behavioral genetics, however, often makes society even more wary, perhaps because it more directly deals with these difficult issues, which the following sections address.

from outside the environment. Often, they are genetically engineered from viruses. 8 Lappé 156. 9 Lappé 156. 10 Lee M. Silver, Remaking Eden Cloning and Beyond in a Brave New World, 1st. ed. New York: Avon Books, 1997, 199-240. 11 Lappé 157. 58

The Princeton Journal of Bioethics Behavioral Genetics Definition As mentioned previously, medical and behavioral genetics have traditionally been categorized according to their applicability to the realms of physicians or psychologists. Still, the border distinguishing medicine from psychology becomes increasing difficult to define, especially as we learn more about mental illnesses. Indeed, many psychological illnesses are now considered diseases and can be treated by medication. Behavioral genetics involves the study and manipulation of animal (and this includes human) behavior by genetic means; and, it seeks to illuminate human behavior and psychology through realization of genetic differences. Behavioral geneticists have traditionally studied the heritability of behavioral traits and the extent to which genetics can affect how an individual makes choices. Behavioral traits are generally highly variable given random environmental differences, but many still have a distinct basis in genetic control.12 Behavioral geneticists are unique in their interest in differences among members of the same species, as opposed to characteristics of different individuals. Thus, the field employs the so called “individual-differences” (as opposed to “species-typicality”) perspective. This perspective involves identifying variation and uncovering the genetic sequences that create differences, and it stems from the presumption that human variation is natural. Here it is believed that traits are rarely binary, instead assuming a bell-shaped curve of phenotypes13 within a population.14 Techniques of Study When it comes to studying these natural differences, behavioral geneticists’ methodologies are quite varied. Both medical and behavioral geneticists use molecular, DNA-based techniques, as well as animal models, to understand the genetics underlying behavior. Before such techniques were available, behavioral geneticists employed different quantitative measures to understand behavior and genetic correlation. Such methods employed correlation and other statistical tools in family studies, twin studies, and adoption studies, including observing identical and fraternal twins raised in different environments.15 In classical methodology, the heritability estimate is a measure of the extent to which phenotypic variation is thought to be a function of genetic variation. For example, if height has a heritability estimate of 0.9, 90% of the variation in height is due to genetics.16 Classical methods, unable to determine exactly which particular genes may be playing a role in this variation, can only illuminate details about whether genetic variation exists. Therefore, heritability estimates say nothing about which genes relate to which traits or how feasible it might be to change such traits.17 Molecular analysis, however, employs two basic techniques: linkage and 12 Parens, S6. 13 Phenotypes are observable characteristics of organisms (shape, size, color, etc.) that result from interactions between inherited genes and the environment. 14 Parens, S5-S7. 15 Parens, S5-S6. 16 Parens, S11. 17 Parens, S10-S12. 59

Vol. IX 2007 association. Linkage studies attempt to determine causal genes from a ‘top-down’ approach, beginning with a certain behavior and using large family pedigrees to trace the genes potentially involved. Association studies work in the opposite manner, starting with a gene suspected to affect a certain behavior, followed by examination of people who do and do not display that behavior to see whether gene variants within these people correlate with the beginning genetic hypothesis. With linkage studies, it can be problematic to find large, multigenerational families to study, and association studies do not necessarily confirm causal relationships between genes and behavior.18 Molecular studies using animal models are useful because of their abilities to have regulated mating, however, it is problematic because knowing whether or not the results are transferable to humans is uncertain.19 Beyond these strategies, new microarray analyses are beginning to explain how genes affect phenotypes at the level of mRNA20 production.21 Today it is typical for studies to couple classical and modern techniques in behavioral analysis.22 In a medical sense, ‘genetics’ often has the connotation of focusing on repair of a certain pathway, enzyme, or symptom of a disease to its normal state. Currently, behavioral genetics studies focus on explaining differences, without the intention of passing judgment on what is normal or abnormal. Behavioral genetics research is difficult for many reasons: numerous genes interact in very complex manners to affect behavioral traits, environmental factors complicate the predicted roles of genes, and mutations have ill-defined effects.23 As such, many behavioral geneticists now study ‘endophenotypes’ – subsections of phenotypes cumulatively responsible for a larger phenotype – in hopes that attention to component parts will help make understanding on a grand scale more feasible.24 Problems Associated with Behavioral Genetics Behavioral genetics challenges the long established tradition of ‘environmental determinism,’ the ideology that conditioning governs behavior and individuals resemble a ‘blank slate.’ Despite the standard rejection of absolute environmental determinism, it is nonetheless necessary to be cautious about reliance instead on genetic determinism.25 High heritability results may help geneticists envision and prompt searches for potential genes regulating certain behavior, but accepting partial genetic responsibility for a trait still precludes complete understanding of phenotype outcomes. Values emphasizing the influence of behavioral genetics cannot tell precise gene function, in terms of pathways utilized, biochemical functions possessed, and phenotypic changes induced.26 In its early years, behavioral genetics operated under the assumption that behaviors and personality traits were encoded in genes in a simple and straightforward manner. For instance, people 18 Parens, S19-S20. 19 Parens, S17. 20 mRNA = messenger RNA; DNA is transcribed into RNA. The RNA which is read by ribosomes and used to make proteins (in the cell cytoplasm) is known as messenger RNA. 21 Parens, S21. 22 Parens S5-S6. 23 Parens, S17-S19. 24 Parens, S19. 25 Parens, S12. 26 Parens, S12-S13. 60

The Princeton Journal of Bioethics believed a specific gene coded for bipolar disorder, and if an individual possessed the bipolar allele, he or she automatically suffered from the mental disorder. Fortunately, modern behavioral geneticists are more informed, and have in fact developed a deep appreciation for the intricate interactions existing between environment and genes. It is now accepted that, while individuals may have a higher probabilities of developing certain mental disorders or displaying certain behaviors, environmental factors often determine whether or not these genetic predispositions manifest themselves.27 Still, misunderstandings of behavioral genetics ensue, especially amongst the public. There commonly remains the idea that traits largely subject to the environment will be easier to alter, though examination of characteristics such as socioeconomic class demonstrate otherwise. Similarly, there is also a mistaken assumption that, if environment is secondary to genetics, changes in the environment are useless. Counterexamples for this assumption include the benefits of glasses and early identification of phenylketonuria. Finally, heritability estimates are often incorrectly presumed to be universal. In truth, these estimates only apply to specific conditions and populations.28 While behavioral geneticists take extreme care not to overemphasize the power of genes in determining behavior – such as debunking the fanciful notion of discovering a “criminal gene” – inadequate public awareness regarding the power of environment, the restricted capabilities of genes, and the limited universality of research results, remains problematic for scientists.29 For the public, behavioral genetics in particular often entails moral ambiguity, especially in terms of its practice in procreative terms and its implications for social understandings of equality and identity. This phenomenon perhaps largely arises due to behavioral genetics infringing upon traditional notions of freedom and independence. If genes determine our behaviors, then how can we be free to make our own decisions? This also raises dilemmas regarding human equality, for if genes define people, and if some genes are superior to others, then moral equality breaks down and observed social inequalities become justifiable.30 Medicalization refers to the expansion of the medical field to include human qualities previously beyond its authority, for instance alcoholism and premenstrual syndrome (PMS).31 Behavioral genetics can be used to support both desirable and undesirable medicalization: it can identify genetic interactions that increase acceptance and help society understand certain behaviors, and it can also induce new ethical dilemmas promoting a basis for discrimination.32 This duality and the uncertainty it engenders relate to the general feelings many people have concerning the wide-ranging field of behavioral genetics. Genetics and Public Policy The Eugenics and Enhancement Debate There is a significant continuum between the two fields of behavioral and medical genetics. In relation to future applications of embryo manipulation, both 27 28 29 30 31 32

Parens, S12-S13. Parens, S13. Parens, S8. Parens S4-S6. Parens, S27. Parens, S8. 61

Vol. IX 2007 behavioral and medical genetics spark debate over moral permissibility. For example, gene therapy, which refers to “the prospect of treating genetic illnesses by manipulating genetic material”33, brings up many issues. Though enhancement in terms of medical treatment is a long-standing tradition, criticism of gene therapy arises because society foresees people crossing the border to enhancement of behavioral traits unrelated to disease, perhaps eventually leading to unnatural homogeneity and problematic ideals.34 Given the potential ability to select traits of offspring, many people dread the onset of a new type of eugenics, one that operates on an individual level and allows for greater parental choice, as opposed to state-imposed limitations common of the past. With this individualism, the regulatory implications of such ‘new’ eugenics are all the more unclear. Some people believe such practices should be fully allowed, arguing there is no difference between such eugenics and improvements people already provide their children through environmental manipulations. Implications and Suggested Routes In terms of public policy for medical and behavioral genetics, Parens makes an apt observation: despite the heavy role of science, making public policies for genetics is difficult because the science here is not definitive. In particular, behavioral genetics emphasizes how genes alone cannot explain behavioral variation, and human development is incredibly complex.35 Difficulties arise when discussing genetics and policy in a mixed scientist/non-scientist setting, though public conversation about matters such as the ones presented in this paper are necessary.36 Our group wishes to emphasize this need for public education. Though, generally speaking, the public is more accepting of medical genetics and more wary of behavioral genetics, we do not think it appropriate for the government to prevent either of these fields from playing a role in technologies involving medical treatment and procreation. Our main reason for this assertion is that we feel the lines between behavioral and medical genetics are too nebulous to warrant distinctions that would prevent certain gene therapies and genetic treatments and selections, but not others. Behavioral genetics is more often labeled under the domain of eugenics, but this is a misinterpretation on behalf of the public, since the science and methodology behind behavioral and medical genetics is largely the same. People may argue against gene alteration infringing upon our ‘humanity,’ but definitions of humanity are far from consistent. Given the current level of scientific understanding behind genomes and phenotypic manifestation, we feel the danger of eliminating free will and diversity is entirely unrealistic: complex gene interactions and environmental factors play too big of a role for us to ever completely control our development. The government should concentrate on educating the public about the scientific basis of genetic study and the debates over its application to medicine. In particular, counseling should be provided for those people considering undergoing such treatment. In addition, the government should set up a committee to monitor the progress of these fields within the scientific community and the controversies developing throughout the public. This way, if the time comes 33 Carl Elliott, Better Than Well American Medicine Meets the American Dream, 1st Ed. ed. New York: W.W. Norton, 2003, XVII. 34 Elliot, XVII-III. 35 Parens, S24. 36 Parens, S9. 62

The Princeton Journal of Bioethics when greater federal regulations, or reevaluation of the concept of distributive justice and funding for genetic therapy are necessary, the government will be prepared to act without delay. We cannot yet predict how this field will take shape, and imposing public policy based on theoretical developments is problematic; thus current approaches mandate liberal public policy oversight. In this arena, our society may have a number of questions to ask of itself, but it also faces many new and exciting opportunities.

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The Princeton Journal of Bioethics

The Princeton Journal of Bioethics Call For Papers 2008 Issue

The Bioethics Forum of Princeton University requests submissions from undergraduate students for the 2008 Princeton Journal of Bioethics. We encourage contributions to the Journal on any topic in bioethics. Submissions in WORD format ONLY are due on or before 31 December 2007 to pjb@princeton.edu. Please include your contact information in your e-mail. General Guidelines and Requirements • Maximum of 3000 words, approximately 10-15 pages. • Times New Roman font, 10 pt • Fully footnoted, following MLA guidelines; please number references. Footnotes in Times New Roman font, 10 pt • Include name, year, and academic institution • A clear, well-developed argument, from any discipline relevant to bioethics. • Include a 100 word abstract. In addition to essays, we will also accept reviews of books dealing with issues in bioethics, as well as shorter opinion pieces. How to contact us: E-mail Address: pjb@princeton.edu Mailing Address: Princeton Journal of Bioethics Frist Campus Center Princeton University Princeton, NJ 08542

Vol. IX 2007

Princeton Journal of Bioethics Frist Campus Center Princeton University Princeton, NJ 08540