Princeton Journal of Bioethics - Fall 2011 by Princeton Journal of Bioethics

Volume XII Fall 2011

PJB Princeton Journal of Bioethics

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

Vol. XII Fall 2011

The Princeton Journal of Bioethics Tony Trenga ‘11 Editor-in-Chief Bruce Easop ‘13 Assistant Editor Angela Dai ‘13 George Maliha ‘13 Joseph Park ‘13 James Williams ‘13 Alina Yang ‘13 Editorial Staff

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Foreword

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

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

On behalf of our staff, I am pleased to present the Fall 2011 issue of the Princeton Journal of Bioethics. The articles we have selected for this issue discuss topics such as the morality of human cloning from the perspective of both parents and the general public, adjustments in end-of-life procedures for the donation of organs in the United Kingdom, informed consent for the separation of conjoined twins, and the application of Karl Marx’s mechanisms of human alienation to the modern bioethical debate. Additionally, we are honored to have a special guest piece contributed by Technical Review Board member Dr. Irene A. Jillson. We hope that you enjoy reading these papers as much as we have. The articles included in the Journal are submitted by undergraduate students from around the country, and for the first time, across the pond. With the guidance of the Technical Review Board, the Princeton Journal of Bioethics Editorial Board compiles, edits, 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 topics 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. They have made time in their busy schedules to help undergraduates explore the role of bioethics in our society. 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 increasing 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, Tony Trenga ‘11 Editor-in-Chief

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The Princeton Journal of Bioethics

Vol. XII Fall 2011

The Princeton Journal of Bioethics

Contents

Volume XII, Fall 2011 Contents Foreword Tony Trenga ‘11 Princeton University

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Global Health Ethics: Toward Common Principles Irene A. Jillson, PhD Georgetown University

Moral Squeamishness or Moral Superiority: Should We Abandon the Dead Donor Rule? Colin Coulter ‘13 University of Leeds

The Necessity of Embryonic Stem Cell Research Talia Lester ‘12 University of California, Los Angeles

The Public’s Role in the Reproductive Cloning Ethical Debate Benjamin Long ‘12 Yale University

Split Decisions: The Ethics of Separating Conjoined Twins Maria Punchak ‘11 Georgetown University

Examination of the Moral Permissibility of Human Cloning and Testing for Late-Onset Genetic Diseases in Children Andrea Rea ‘12 University of Washington

Marxian Principles of Human Flourishing in the Modern Age of Technology and Biomedicine Tom M. Thomas ‘11 University of California, Los Angeles

The Princeton Journal of Bioethics

Vol. XII Fall 2011

The Princeton Journal of Bioethics

Vol. XII Fall 2011

Global Health Ethics: Toward Common Principles Irene A. Jillson, PhD Georgetown University Knowing that there are common values across spiritual beliefs is critical for an understanding of the developing conceptual frameworks of health ethics that are being used today. The development of the contemporary ethics movement is rooted deeply in classical Western philosophy, but in today’s constantly changing world it is imperative to take into consideration advancements in technology, research, and public health, and to incorporate the perspectives of scholars beyond the traditional Western school of thought.

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

Notwithstanding popular perception that bioethics or health ethics was a 20th Century development based largely on Western philosophy, concern for and social responses to ethical issues have been extant for millennia. Documentation of ethical principles dates to the Code of Hammurabi—circa 2500 BC—which included provisions concerning the importance of ethical considerations to clinical practice and recognized the physician’s dual responsibility to the patient and to society. The Pharonic principle of Maat addressed the principle of ethical balance and compassionate care for the poor and sick. Hindu philosophy holds sacred the transcendent character of human life, expressed through the principles of sanctity and quality of life and the duty to preserve and guard individual and communal health. In Judaism, Tikun olam is the Judaic imperative to repair the world, reflecting the divine values of justice (tzedek) and compassion (hesed). Christianity values charity toward individuals and members of society generally and the sanctity of human life. In Islam, one of the hadiths (sayings of the Prophet Mohammad) made treatment mandatory or obligatory when a treatment was definitely available and if withholding treatment would be harmful. If one is unsure of any benefit from a treatment and any harm is feared, then it is discouraged according to Islamic principles. (Jillson, 2011) Knowing that there are common values across spiritual beliefs is critical for an understanding of the developing conceptual frameworks of health ethics that are being applied to health issues as diverse as resource allocation, clinical practice, engagement of vulnerable populations in medical research, donor investment in health, and related development policies 1

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and programs. The development of the contemporary ethics movement, which initially focused on medical research, is considered to have initiated with the Nuremberg Code (1949), which stated that the voluntary informed consent of the human subject is absolutely essential. (US GPO, 1949) This was followed by the Declaration of Helsinki by the World Medical Association, which stated that the well-being of the participant should take precedence over the interests of science and society. (World Medical Association, 1964) This declaration is updated every few years to take into consideration new medical technologies and research methods, as well as other factors. The most recent revision—the sixth— was approved in 2008.The Belmont Report, prepared under the aegis of the US President’s Commission for the Protection of Human Subjects, was issued in 1979. (Beauchamp and Childress, 2001) This document, and indeed much of the discourse related to bioethics in the past 40 years, was based primarily on the principalism approach developed at Georgetown University in Washington, D.C. This approach posits four basic principles: autonomy, beneficence, non-maleficence, and justice. These principles are considered universal; that is, they were believed to transcend geographic, cultural, economic, and political boundaries. (Beauchamp and Childress, 1979) They have also influenced the clinical care of patients, including adolescents; the conduct of research involving human subjects at the national, regional, and international levels; and the training of clinicians and researchers. Over the past decade, there has been a flourishing of philosophical, social, and other discourse regarding health ethics; much of this discourse has been based in new concepts of and approaches to health research, development, and public health. It has, importantly, not been dominated by North American or European thinkers—although many, including notably Dr. Paul Farmer, Dr. Nancy Kass, Dr. Alex London, Dr. Peter Singer, and others, have made invaluable contributions to the discourse. Rather, the discourse has benefited from a rich diversity of scholars and others who have explored health ethics from a wide range of perspectives. New concepts of health ethics principles and frameworks have been proposed by bioethicists from the Democratic Republic of the Congo and South Africa, philosophers from Cameroon and India, public health physicians from Egypt, and biomedical researchers from Argentina and Venezuela. Among the conceptual frameworks that have been posited—and that have been the basis for recent discourse regarding health ethics—are the Human Development Approach to International Research (London, 2005), which makes explicit the linkages between medical research and the social determinants

of health and global justice; the Fair Benefits Approach (El Setouhy, et al, 2004), which also focuses on medical research; Ethics from Below (Farmer, P and Gastineau Campos, N, 2004), which addresses health ethics more broadly and suggests contextualizing ethical dilemmas broadly in the social sciences, rather than focusing only on moral philosophy; a Participatory Framework for Health Ethics (Singer and Benatar 2001); and the African Meta-physical Worldview (Tangwa, 1996). Awareness of these new concepts of health ethics is essential for all those engaged in ensuring that individuals and populations broadly benefit from the health rights to which they are entitled through the multiple international accords that have been promulgated since 1948. Rather than focusing somewhat narrowly on medical research—as vital as that field is, and as important are assurances that all, including adolescents, benefit equally from it—many of the new approaches consider public health, access to individual health care and to related services, and the broad socioeconomic context of health. Moreover, as they reflect a wide diversity of cultures and religions, they are not embedded only in Judeo-Christian principles, but in a broader range of spiritual and philosophical belief systems. Although Principalism has served for more than half a century to endeavor to ensure protection of human subjects of research— and, to a lesser extent, equitable access to health care— consideration of religious, cultural, and other values and norms beyond those prominent in the West has enriched the discourse and enabled a broader understanding of both health ethics generally and their implication for adolescent health. Applying the Global Health Ethics Framework of Benatar, Daar, and Singer, for example, requires considering not only philosophical paradigms, but also allowing “the extension of human rights beyond civil and political rights to include social, economic and cultural rights and their close integration with reciprocal responsibilities.” (Benatar, Daar and Singer, 2003) Thus, an individual’s rights would be considered in the context of interpersonal ethics (including freedom of choice), public health ethics (including equity and access to care), and environmental rights, which pertain to all members of society. However, these individual rights are also balanced with collective rights of his or her society, the global community, and individual and collective responsibilities. Notably, although not explicitly mentioned in the Universal Declaration on Bioethics and Human Rights, adopted in October 2005 by acclamation at the 33rd session of the General Conference of UNESCO (UNESCO, 2005), the influence of broader considerations of health ethics

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is apparent in the Declaration and the documents that have been produced subsequently by the UNESCO Office on Bioethics and Human Rights. Importantly, the Declaration linked human rights and ethics related to health broadly speaking; that is, beyond research to include health services, resource allocation, and complex issues related to genomics and organ transplant. Addressing these and other comparable complex issues requires a broad and deep understanding of health ethics on the part of the clinician, researcher, and all those who are involved in making necessary ethical decisions, or contributing to the discussion regarding such decisions. The emerging, diverse concepts of health ethics both contribute to a deeper understanding of health issues related to adolescents and can serve as a framework for planning and evaluating national, regional, and international health strategies at the global, regional, national and local levels. Consideration of the socioeconomic and political context in which each individual lives; the education, health, and social infrastructure with which he or she interacts; and the religious and cultural norms that pervade that society, are increasingly part of the intellectual fabric of these new global health ethics frameworks. Works Cited Beauchamp T, Childress J. Principles of Biomedical Ethics. 5th ed. New York, NY: Oxford University Press; 2001. Benatar SR, Daar AS, Singer PA. (2003) Global health ethics: the rationale for mutual caring. International Affairs. 2003;79(1):107-138. Farmer P, Campos N. Rethinking medical ethics: a view from below. Dev World Bioeth. 2004;4(1):17-41. Jillson, IA (2011) Global Health Ethics: Toward Common Principles and their Practical Application to Health Research, Clinical Care, and Systems Management. Invited Keynote address: Second International Congress on Bioethics, Tehran, Iran, February 5-7 2011. London AJ. Justice and the human development approach to international research. Hastings Cent Rep. 2005;35:24-37. 4

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Singer PA, Benatar SR. Beyond Helsinki: a vision for global health ethics. BMJ. 2001;322:748-788. Tangwa GB. Globalisation or Westernization? Ethical concern in the whole bio-business. Bioethics. 1999;13;3-4. Available at: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=526330. United Nations. Reprinted as: The Universal Declaration of Human Rights, a Magna Carta for All Humanity. 1948. United Nations Web site. http://www.un.org/rights/50/carta.htm. Accessed March 6, 2011. United Nations. Vienna World Conference on Human Rights. 1993. Office of the High Commission for Human Rights Web site. http:// www2.ohchr.org/english/law/vienna.htm. Accessed March 6, 2011. United Nations. The right to health, fact sheet 31. 2011. Office of the High Commission for Human Rights Web site. http://www.ohchr. org/Documents/Publications/Factsheet31.pdf. Accessed March 6, 2011. Trials of war criminals before the Nuremberg military tribunals under Control Council Law, Volume 2, Number 10. Washington, DC: US Government Printing Office (reprint); 1949: 181-182. United Nations Educational, Scientific and Cultural Organization. Universal Declaration on Bioethics and Human Rights. 2005. United Nations Educational, Scientific and Cultural Organization. Universal Declaration on Bioethics and Human Rights Web site. Available at: http://unesdoc.unesco.org/images/0014/001461/14618e.pdf. Accessed March 7, 2011. United Nations (2000) General Comment No. 14, The right to the highest attainable standard of health (article 12 of the International Covenant on Economic, Social and Cultural Rights). Geneva: United Nations Committee on Economic, Social and Cultural Rights.

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Moral Squeamishness or Moral Superiority: Should We Abandon the Dead Donor Rule? Colin Coulter â&#x20AC;&#x2DC;13 University of Leeds The Dead Donor Rule states that vital organs cannot be taken for donation until the patient is declared dead. Given the sensitive nature of organ donation and the need to act quickly for organ donation to be successful, the DDR has become recognised as an important ethical safeguard to avoid the exploitation of patients by doctors who wish to increase the donor organ pool. However a closer examination of the DDR reveals that it suffers from major inconsistencies and contradictions. This paper suggests that if one is to accept the apparent weaknesses of defining death in these patients, we ought to shift the debate about organ donation and focus on assessing the public reaction to the practice of removing organs from individuals for whom withdrawal of treatment has been decided but has not yet occurred. This author recognises the controversial and sensitive nature of such a practice but finds the arguments used against it to be ultimately unconvincing. Instead it is suggested that our own moral conscience is too squeamish to consider a more coherent alternative to what has become almost universally accepted. By examining issues such as our dependence on definition, euthanasia by organ donation and patient autonomy, this paper argues that the DDR has limited credibility and we ought to be brave enough to engage with the public to change the rules about organ donation in such a way that would lead to more organs becoming available and changing the lives of thousands of people. â&#x20AC;&#x153;Thus conscience does make cowards of us allâ&#x20AC;? Hamlet, Act III Scene I. Introduction The Dead Donor Rule (DDR) states that organs necessary for life cannot be taken from patients until they are dead. Some see the DDR as an important safeguard against the abusive exploitation of patients by doctors who wish to increase the supply of organs. Others believe that it sanctions active euthanasia. In defending the abandonment of the DDR, it is argued that the entire process of organ donation is built upon the delusion that patients who donate are dead. Furthermore, it is thought that the current 6

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practice of establishing strict criteria for diagnosing death is flawed and that abandonment of the DDR should be complemented by a focus on patient consent and autonomy as the key considerations for organ donation. This paper will focus on the practice of organ donation in the UK but comparisons are made with organ donation programmes in other parts of the world which provide useful insights into the inconsistencies of the DDR. Current Status of Organ Donation in the UK. Donation after cardiac death (DCD) has had a renaissance over the last two decades as the major source of donated organs.1 Prior to this heartbeating donation from brain-dead donors represented the vast majority of cadaveric organ donations in the UK. The decrease in heart-beating donors is due to improvements in the diagnosis and management of severe brain injuries and a decrease in the number of people dying from severe injuries or catastrophic cerebrovascular accidents2. The return to DCD whereby the patient is diagnosed as dead based on cardiopulmonary criteria rather than brainstem criteria is beleaguered by ethical problems including deciding when the patient is actually dead. How Do We Diagnose Death? Doctors involved in the process of organ donation face two opposing pressures. The first is to make sure their actions are consistent with the DDR- ensuring the patient is dead before donation can proceed. The second is to initiate the retrieval process as quickly as possible. Given the potential conflict of interest between these two pressures, organ donation policies in the UK rightly insist that doctors diagnosing death must have no involvement in the donation process.3 Diagnosing the exact moment of death has therefore become a crucial step in these procedures. Cadaveric organ donation is sourced from two groups of patients: the brain-dead and non-heart-beating organ donors. The separation of these two groups is important because despite both being considered dead, the diagnosis of their death is completely different. Those who support the abandonment of the DDR argue that neither of these patients are actually dead. Instead the medical community has embraced specific definitions of death which may be considered a convenient way of evading the ethical and legal barriers which would prohibit such patients from donating their organs. 1 Moers C, Leuvenink HGD, Ploeg RJ. Non-heart beating organ donation: overview and future perspectives. European Society for Organ Transplantation 2007; 20: 567-575. 2 Ridley S, Bonner S, Bray K, Falvey S, Mackay J, Manara A et al. UK guidance for non-heartbeating donation. Brit Jour Anaesth 2005; 95: 592-595. 3 UK guidance for non-heart-beating donation. Brit Journal of Anaesthesia 2005; 95: 592-595.

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Are Brain-Dead Patients Really Dead? In the UK (and many other counties) patients diagnosed as braindead are legally dead. This diagnosis is based on the irreversible absence of brainstem function and a state of permanent unconsciousness. Such patients require continuous mechanical ventilation without which they would die. Despite these clinical features, their hearts beat independently and they are capable of a number of processes including somatic growth and development, reproduction and physiological control of salt and water balance. To the uninformed observer these patients would appear alive. It has already been asked (and remains unanswered) why the first set of clinical features qualifies the patient as dead and disregards the second set.4 In 1968, a Harvard committee established the brain-stem criteria for declaring death and this has become firmly rooted as an ethically sound means of determining death in the UK and many other countries.5 It must not be overlooked, nor was it hidden, that this committee was convened in an attempt to establish an ethical and legal justification for the retrieval of organs from patients who were in this state.6 Against this background, it seems fair to suggest that this particular criterion was devised to permit an arbitrary set of clinical findings which would directly lead to an increase in the pool of donor organs. That these findings are arbitrary is most obvious when one examines the disagreement over how many minutes of asystole qualifies as death which is discussed later. Such is the lack of consensus that brain-death qualifies as death that anaesthetists continue to debate whether these patients should be sedated prior to organ donation.7,8,9,10 Other attempts to justify the diagnosis in these patients have been sought in another definition of death: ‘the loss of functioning of the organism as a whole’.11 Originally this definition was true for brain-dead patients who

shortly after losing irreversible brain stem function and consciousness would suffer cardiac arrest and die. But advances in intensive care interventions have meant that brain-dead patients can survive for significant periods of time, preserving the functioning of the organism. There has been a relative silence from the medical community in acknowledging the suggestions that brain-death does not qualify as death and the reasons for this are considered later. With this in mind several authors have called for frank admissions that the current criteria for diagnosing death in brain-dead patients cannot withstand scrutiny and should be re-evaluated.12,13,14

4 Truog RD. Brain Death - Too flawed to endure, too ingrained to abandon. Journal of Law, Medicine, and Ethics 2007; 35: 273-281. 5 Ad hoc committee of the Harvard Medical School to examine the definition of death. A definition of irreversible coma. JAMA 1968; 15: 22-28. 6 Evans DW. Seeking an ethical and legal way of procuring transplantable organs from the dying without further attempts to redefine human death. Philosophy, Ethics and Humanities in Medicine 2007; 2: 11. 7 Young PJ, Matta BF: Anaesthesia for organ donation in the brainstem dead: Why bother? Anaesthesia 2000; 55: 105–106. 8 Dalgleish D: Brain stem death: Healthcare workers have difficulty accepting current management. Letter. Br Med J 2000; 321: 635. 9 Keep PJ: Anaesthesia for organ donation in the brainstem dead. Letter, comment. Anaesthesia 2000; 55: 590. 10 Poulton B, Garfield M: The implications of anaesthetising the brainstem dead: 1. Anaesthesia 2000; 55: 695. 11 Lizza JP. Persons, Humanity, and the Definition of Death. Baltimore, John Hopkins University Press, 2005.

Are Patients Diagnosed Dead by Cardio-Respiratory Criteria Really Dead? Patients who do not meet brain-death criteria but whose continued care is considered futile may be considered for withdrawal of care. Such decisions are made collectively between the clinicians and relatives and take into account any documented or verbal wishes made by the patient. Typically such patients have suffered catastrophic neurological damage such as severe head injuries, subarachnoid haemorrhages and hypoxic brain insults. Protocols for donation after cardiac death (DCD) are developed by individual units across the UK and are summarised in Figure 1. The controversy regarding the diagnosis of death in these patients stems from the declaration of death after five minutes of asystole.15,16,17,18 At this point the patient is thought to have had ‘irreversible cessation of respiratory and cardiac function and is therefore dead’.19 What “irreversible” means in this context is not exactly clear. Efforts to resuscitate patients after five minutes of “downtime” have resulted in successful restoration of independent cardiac and respiratory function.20 Lynn points out that although 12 Woodcock TE. New act regulating human organ transplantation could facilitate organ donation. BMJ 2002; 324: 1099. 13 Kerridge IH, Saul P, Lowe M, McPhee J & Williams D. Death, dying and donation: organ transplantation and the diagnosis of death. J Med Ethics 2002; 28: 89-94. 14 Truog RD & Robinson WM. Role of brain death and the dead donor rule in the ethics of organ transplantation. Crit Care Med 2003; 31: 2391-2396. 15 Shemie SD. Clarifying the paradigm for the ethics of donation and transplantation: Was ‘dead’ really so clear before organ donation? Philosophy, Ethics and Humanities in Medicine 2007; 2: 18. 16 Robertson J. The Dead Donor Rule. Hastings Center Report 1999; 29: 6-14. 17 Koppelman ER. The Dead Donor Rule and the Concept of Death: Severing the Ties That Bind Them. The American Journal of Bioethics 2003; 3: 1-8. 18 Gardiner D, Riley B. Non-heart-beating organ donation – solution or a step too far! Anaesthesia 2007; 62: 431-433. 19 Intensive Care Society. Guidelines for Adult Organ and Tissue Donation, 2005. Accessed on 09/12/10 from <http://www.ics.ac.uk/intensive_care_professional/standards_and_guidelines/organ_and_tissue_donation_2005>. 20 Maleck WH, Piper SN, Triem J, Boldt J, Zittel FU. Unexpected return of spontaneous circulation after cessation of resuscitation (Lazarus phenomenon). Resuscitation 1998; 39: 125-128.

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the passage of time following cessation of these functions marks the increasing probability that the patient is dead but the exact point of death cannot be established with confidence.21 As with criticisms levelled at diagnosing death in brain-dead patients, the decision that the passage of five minutes should result in irreversible loss of function seems arbitrary. This becomes even more conspicuous when one considers that Germany and Japan require a stand-down time of two hours and the United States has reported standdown times of under two minutes.22 According to these criteria one could be alive in Germany but dead in the UK. These inconsistencies have been recognised and Bell points out that the timing of death is problematic in the UK given the absence of any professional guidelines as to when death can be certified outside of the brainstem death criteria.23 Given all these contradictions it is not surprising that some have also called for an honest confession that we do not know how long one should wait after cardiopulmonary arrest until death is certified.24

maintain the moral status quo’.26 This author agrees with the premise but strongly disagrees with the conclusion. A deliberate evasion of responsibility represents a moral squeamishness which is permitted only because it disguises itself as championing the safeguarding of patients. There is perhaps an irrational fear that acknowledging the problems with current practice will lead to a public and media backlash, eroding public trust in the health profession and jeopardising the future of organ donation practices. Such attempts to sensationalise (and demonise) the practice of organ donation27 have been tried before and often fail to attract any measure of public outrage or distrust.28 The occasions when organ donation rates have been severely affected, such as when Brazil attempted a strict form of presumed consent which allowed doctors to remove organs regardless of the wishes of the family29, are so extreme precisely because they evade any involvement from the public. Transparency and public understanding are crucial to the development of organ donation practices. Interestingly some surveys even suggest that issues related to respect for valid consent and the extent of neurological injury may matter more to the public than concerns about whether the patient is already dead at the time of organ removal.30 The manipulation of definitions of death has become a Procrustean bed, constantly being added to or rearranged to suit the protocols of different units around the world. Using arbitrary definitions of death is a form of professional sophistry which is more likely to harm public trust in the health service.31 As Kerridge concludes, ‘the long term viability of transplantation programmes is likely to be better served by telling the truth than trading in fictions’32. But one ought to ask why those authors who have “discovered” these misdiagnoses are not more outraged that the practices continue. Indeed several of these authors endorse the continued donation of organs from brain-dead patients and donation after cardiac death but their support is not conditional on the patient being dead.

Withdrawal of Care

Asystole

5 Minutes of Permanent Asystole

Patient Declared Dead

Organ Retrieval Commences

Figure 1: Sequence of events recommended by the Intensive Care Society and the Royal Medical Colleges for the withdrawal of care to organ retrieval in the UK.25

The Danger of Relying on Definition Both heart-beating donation and DCD have been shown to suffer from fundamental weaknesses which undermine their claim to ethical integrity. The scientific community appears reluctant to acknowledge these problems but hypocritically defends the DDR as an important ethical safeguard to prevent the exploitation of patients. Brock explains that in making and discussing public policy: ‘we sometimes face choices between truth and consequences [...] if truth jeopardises public confidence, it is better to

21 Lynn J. Are The Patients Who Become Organ Donors Under The Pittsburgh Protocol For “NonHeart-Beating Donors” Really Dead? Kennedy Institute of Ethics Journal 1993; 3: 167-178. 22 Boucek MM, Mashburn C, Dunn SM, Frizell R, Edwards L, Pietra B et al. Paediatric heart transplantation after declaration of cardiocirculatory death. New England Journal of Medicine 2008; 359: 709-714. 23 Bell MDD. Non-heart beating organ donation: clinical process and fundamental issues. Brit Jour Anaesth 2005; 94: 474-478. 24 Evans, 2007. 25 Intensive Care Society. Guidelines for Adult Organ and Tissue Donation, 2005. Accessed on 09/12/10 from <http://www.ics.ac.uk/intensive_care_professional/standards_and_guidelines/organ_and_tissue_donation_2005>.

26 Brock DW. The role of the public in public policy on the definition of death. In: The definition of death: contemporary controversies. Youngner SJ, Arnold RM, Schapiro R (Eds). Baltimore, John Hopkins University Press, 1999. 27 Younger SJ. Some must die. In: Organ Transplantation: Meanings and Realities. Youngner SJ, Fox R, O’Connell L (Eds). Madison, WI, University of Wisconsin Press, 1996. 28 Truog & Robinson, 2003. 29 Csillag C. Brazil abolishes “presumed consent” in organ donation. Lancet 1998; 352: 1367. 30 Truog RD, Miller FG. The Dead Donor Rule and Organ Transplantation. New England Journal of Medicine 2008; 359; 7. 31 Bell MDD. Non-heart-beating organ donation: old procurement strategynew ethical problems. Journal of Medical Ethics 2003; 29: 176-181. 32 Kerridge et. al., 2002.

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The Paradigm Shift The alternative ethical argument which defends the donation of organs from brain-dead and non-heart-beating donors accommodates the abandonment of the DDR. Instead of using the certification of death as the crucial step in organ donation, it is proposed that the ethics of organ procurement should undergo a paradigm shift from a diagnosis of death to a strong focus on autonomy and nonmaleficence.33 Truog proposes an alternative question to selecting individuals for organ donation, asking: ‘When are patients sufficiently close to death or sufficiently neurologically impaired that they can choose to be an organ donor?’34 This question may seem to be as imprecise as the definition of death but these scenarios commonly occur in intensive care units even when organ donation is not being considered. Deciding to withdraw care from the ‘imminently dying’35 depends on patient autonomy and informed consent from the family and therefore offers a suitable safeguard to the rights of the patients. Truog’s other focus is on the principle of nonmaleficence which instructs doctors to avoid causing the patient any harm. An absolutist interpretation of this principle is completely unrealistic in modern medicine given that so many procedures carry an unavoidable degree of harm (needle injections, chemotherapy etc.). This moral “dilemma” has sensibly been avoided by justifying such actions on the basis of proportionality. Harmful interventions are not contrary to “primum non nocere” provided they are perceived to be in the patient’s best interests. Abandonment of the DDR does not change the fact that the independent decision to withdraw care has been considered as being in the patient’s best interests. Crucially the decision to donate organs always follows on from this decision and can in no way expedite the decision making process. The chronology of this is important since it defends against the histrionic claims made by critics like Renée Fox who argues vehemently (and incoherently- Fox at one point honestly argues that the term “non-heart-beating” donation was coined by doctors purely to convince themselves that these patients were not going to recover) that organ donation has become ‘an ignoble form of cannibalism’.36 Fox comes close to identifying genuine inconsistencies in the debate about organ donation 33 Verheijde JL, Rady MY, McGregor J. Recovery of transplantable organs after cardiac or circulatory death: Transforming the paradigm for the ethics of organ donation. Philosophy, Ethics and Humanities in Medicine 2007; 2: 8. 34 Truog & Robinson, 2003. 35 Ibid. 36 Fox RC. “An ignoble form of cannibalism”: Reflections of the Pittsburgh Protocol for procuring organs from non-heart-beating cadavers. Kennedy Institute of Ethics Journal 1993; 2: 231-239.

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but instead resorts to demonising the practice altogether- how non-heartbeating organ donation is in any way similar to cannibalism is absent from her critique and she also fails to mention at any point that these patients have all agreed to have their organs donated. A more worthy critique may have focused on the implications of arguing that these patients are not really dead. Indeed, the new ethical paradigm proposed by some has so far not acknowledged that if patients are not dead at the time of donation, the act of donation will be considered by many as active euthanasia. Would Abandonment of Dead Donor Rule Sanction Active Euthanasia? The removal of organs from living patients would be the direct cause of their death.37 However it is important to note that although such patients are being actively euthanized, abandonment of the DDR does not sanction the full-scale use of active euthanasia. Ethicists today make a distinction between letting die and killing and the prevailing opinion is that withdrawal of care qualifies as the former. The basis of this argument is that the patient’s underlying disease will cause their death when life supportive treatments are withdrawn. This casuistry is currently used to justify the procurement of organs from those who donate after cardiac death. To argue that these patients die by omission rather than an act does not withstand scrutiny. It is helpful to consider the failings of this distinction using the hypothetical example of two patients on mechanical ventilation.38 The first patient chooses to have care withdrawn and the second patient does not. If the first patient dies following treatment withdrawal, the current consensus is that it is the underlying disease which kills the patient. However this conclusion is undermined by the fact that the second patient who has not had the treatment withdrawn still lives. Applying strict criteria of causation, it must be accepted that the cause of the first patient’s death was the removal of life support (i.e. an act not an omission). Despite this conclusion, the ethical framework for choosing to withdraw care is still defensible. Basing the decision on valid consent and respect for the autonomy of the patient is an ethically coherent basis to withdraw care. In this way, whether the withdrawal of care or removal of organs is the cause of death becomes ethically indistinguishable. It is for society to decide whether the implications of “causing death” are so severe that they discredit 37 Potts M, Evans DW. Does it matter that organ donors are not dead? Ethical and policy implications. J Med Ethics 2004; 31: 406-409. 38 Miller FG, Truog RD. “Rethinking the ethics of vital organ donations.” Hastings Centre Report 2008; 38: 38-46.

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the original ethical premise. It should also be noted that this approach focuses directly on patient consent rather than depending on definitions of death which is a surer way of safeguarding public trust than manipulating the definition of death. Importantly the recognition that withdrawal of care (and the retrieval of organs) is the same as causing death does not sanction active euthanasia. In all these cases organ retrieval depends on the independent decision to withdraw care. The decision to die has already been made and will be actioned one way or another. This is in stark contrast to a terminally ill patient whose quality of life is so poor that they request a lethal dose of medication. The justifications proposed by these patients deserve attention but are beyond the scope of this essay. The salient point is that other treatment options are available to them and they are not dependent on life support. Truog and Miller ask if the decision has been made to cause the patient’s death by withdrawal of care, what difference is there in causing that death through organ retrieval?39 Bell criticises this position explaining that the distinction fails to acknowledge the inherent conflict of interest generated by the benefit of a third party.40 These conflicts of interest point to the valid concern that patients could be exploited. But as has been shown, safeguards exist to secure the autonomy of the patient and their relatives and to ensure that the organ retrieval team are kept separate from those who withdraw treatment.

paradigm upon which decisions are made. A charge of moral recklessness is unfair and fails to acknowledge the coherency of their arguments.

Morally Squeamish or Morally Superior? Regardless of the convincing justifications for abandoning the DDR, it is clear that retrieving vital organs from living patients would be intolerable to many doctors. Whether one agrees with the flawed distinction between withdrawal of care and killing, many doctors would be unwilling to participate in such procedures. A consensus has been built over many years which perceives current practices as ethically sound and it is unreasonable to expect all doctors (and the public) to instantly accept a new criteria. But it is equally unfair to say that these doctors possess a moral superiority over those who challenge the inherent problems of this process. These tensions unveil the mutability of society’s ethical conscience. Ethics and morality change with time and such changes have throughout history been responsible for progress and development. Truog and his colleagues explained that their views are ‘offered not as fiats but as proposals’ (personal communication with author) and only wish for public debate to try and shift the ethical

Ad hoc committee of the Harvard Medical School to examine the definition of death. A definition of irreversible coma. JAMA 1968; 15: 22-28.

39 Miller & Truog, 2008. 40 Bell MDD. Redefining the ethical and legal foundations of organ procurement. Crit Care Med 2004; 32: 1241.

Conclusion Organ donation has the potential to transform the lives of thousands of people across the UK and the rest of the world. It is right that society is cautious not to sacrifice its moral and ethical integrity in order to meet this need. But the abandonment of the DDR and its accompanying ethical justification offers a hopeful and ethically coherent alternative to current practice. In return it asks only for dialogue and debate from the wider community to try and establish whether as a society we are ready to embrace the ethical arguments which favour it. Only the dogmatic claim to possess an absolute morality and science should have no part in this. All we can do as scientists is recognise the struggle between the hope of advancement and fear of the unknown. It is a recognition best articulated by Professor Jacob Bronowski who reconciled this struggle with a humble admission of our dependence on establishing our moral and ethical conscience through a framework of debate and deliberation41. Works Cited

BBC. The Ascent of Man, 1973, television programme, British Broadcasting Corporation, UK. Bell MDD. Non-heart-beating organ donation: old procurement strategynew ethical problems. Journal of Medical Ethics 2003; 29: 176-181. Bell MDD. Non-heart beating organ donation: clinical process and fundamental issues. Brit Jour Anaesth 2005; 94: 474-478. Bell MDD. Redefining the ethical and legal foundations of organ procurement. Crit Care Med 2004; 32: 1241. 41

BBC. The Ascent of Man, 1973, television programme, British Broadcasting Corporation, UK.

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Boucek MM, Mashburn C, Dunn SM, Frizell R, Edwards L, Pietra B et al. Paediatric heart transplantation after declaration of cardiocirculatory death. New England Journal of Medicine 2008; 359: 709-714.

Koppelman ER. The Dead Donor Rule and the Concept of Death: Severing the Ties That Bind Them. The American Journal of Bioethics 2003; 3: 1-8.

Brock DW. The role of the public in public policy on the definition of death. In: The definition of death: contemporary controversies. Youngner SJ, Arnold RM, Schapiro R (Eds). Baltimore, John Hopkins University Press, 1999.

Lizza JP. Persons, Humanity, and the Definition of Death. Baltimore, John Hopkins University Press, 2005.

Csillag C. Brazil abolishes “presumed consent” in organ donation. Lancet 1998; 352: 1367. Dalgleish D: Brain stem death: Healthcare workers have difficulty accepting current management. Letter. Br Med J 2000; 321:635. Evans DW. Seeking an ethical and legal way of procuring transplantable organs from the dying without further attempts to redefine human death. Philosophy, Ethics and Humanities in Medicine 2007; 2: 11. Fox RC. “An ignoble form of cannibalism”: Reflections of the Pittsburgh Protocol for procuring organs from non-heart-beating cadavers. Kennedy Institute of Ethics Journal 1993; 2: 231-239. Gardiner D, Riley B. Non-heart-beating organ donation – solution or a step too far! Anaesthesia 2007; 62: 431-433. Intensive Care Society. Guidelines for Adult Organ and Tissue Donation, 2005. Accessed on 09/12/10 from <http://www.ics.ac.uk/intensive_care_professional/standards_and_guidelines/organ_and_tissue_donation_2005>. Keep PJ: Anaesthesia for organ donation in the brainstem dead. Letter, comment. Anaesthesia 2000; 55:590. Kerridge IH, Saul P, Lowe M, McPhee J & Williams D. Death, dying and donation: organ transplantation and the diagnosis of death. J Med Ethics 2002; 28: 89-94. 16

Lynn J. Are The Patients Who Become Organ Donors Under The Pittsburgh Protocol For “Non-Heart-Beating Donors” Really Dead? Kennedy Institute of Ethics Journal 1993; 3: 167-178. Maleck WH, Piper SN, Triem J, Boldt J, Zittel FU. Unexpected return of spontaneous circulation after cessation of resuscitation (Lazarus phenomenon). Resuscitation 1998; 39: 125-128. Miller FG, Truog RD. “Rethinking the ethics of vital organ donations.” Hastings Centre Report 2008; 38: 38-46. Moers C, Leuvenink HGD, Ploeg RJ. Non-heart beating organ donation: overview and future perspectives. European Society for Organ Transplantation 2007; 20: 567-575. Potts M, Evans DW. Does it matter that organ donors are not dead? Ethical and policy implications. J Med Ethics 2004; 31: 406-409. Poulton B, Garfield M: The implications of anaesthetising the brainstem dead: 1. Anaesthesia 2000; 55: 695. Ridley S, Bonner S, Bray K, Falvey S, Mackay J, Manara A et al. UK guidance for non-heart-beating donation. Brit Jour Anaesth 2005; 95: 592-595. Robertson J. The Dead Donor Rule. Hastings Center Report 1999; 29: 6-14. Shemie SD. Clarifying the paradigm for the ethics of donation and transplantation: Was ‘dead’ really so clear before organ donation? Philosophy, Ethics and Humanities in Medicine 2007; 2: 18. 17

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Truog RD. Brain Death - Too flawed to endure, too ingrained to abandon. Journal of Law, Medicine, and Ethics 2007; 35: 273-281.

The Necessity of Embryonic Stem Cell Research

Truog RD & Robinson WM. Role of brain death and the dead donor rule in the ethics of organ transplantation. Crit Care Med 2003; 31: 2391-2396. Truog RD, Miller FG. The Dead Donor Rule and Organ Transplantation. New England Journal of Medicine 2008; 359; 7. UK guidance for non-heart-beating donation. Brit Journal of Anaesthesia 2005; 95: 592-595. Verheijde JL, Rady MY, McGregor J. Recovery of transplantable organs after cardiac or circulatory death: Transforming the paradigm for the ethics of organ donation. Philosophy, Ethics and Humanities in Medicine 2007; 2: 8. Woodcock TE. New act regulating human organ transplantation could facilitate organ donation. BMJ 2002; 324: 1099. Young PJ, Matta BF: Anaesthesia for organ donation in the brainstem dead: Why bother? Anaesthesia 2000; 55:105–106. Younger SJ. Some must die. In: Organ Transplantation: Meanings and Realities. Youngner SJ, Fox R, O’Connell L (Eds). Madison, WI, University of Wisconsin Press, 1996.

Talia Lester ‘12 University of California, Los Angeles As with many current issues in biomedical ethics, the debate surrounding stem cell research has its roots in ancient and fundamental questions of morality. However, despite the prominence of embryonic stem cell research as an issue of national debate, many people on both sides of the forum do not fully understand what embryonic stem cells are, where they come from, and how they can be used. These facts, combined with the frameworks of ethical decisionmaking, help clarify both the potential pitfalls and benefits of embryonic stem cell research. The most fervent detractors from stem cell research worry about the morality of destroying an embryo, whereas moderate opponents are most concerned about a “slippery slope”, where stem cell research could bring about even more morally questionable scientific practices. In both cases, understanding the relevant basic developmental biology could help assuage many of the common concerns regarding embryonic stem cell research. Furthermore, many are unaware of the crucial role that in vitro fertilization plays in the current field of embryonic stem cell research. When taken together, these points clarify the acceptability and necessity of embryonic stem cell research. Although alternatives to embryonic stem cells may be close at hand, the moral issues surrounding stem cell research will not disappear. A better public understanding of the science and logic behind the use of embryonic stem cells is crucial if the field of stem cell biology is to progress unhindered. organs becoming available and changing the lives of thousands of people. Historical Background and Introduction The specific issue of stem cell research is a relatively new one, but the moral questions surrounding the field are ancient and ongoing. The long-standing debate on abortion raised the question of an embryo’s rights long before the details of human developmental biology were discovered. Documented opposition to abortion dates back to the Hippocratic oath, which contains the line, “I will not give a woman a pessary to cause an abortion.” Abortion remained a risky procedure until the 1960’s, when the modern abortion procedure was developed. However, the improvements in safety did not address the underlying moral question. Stem cells did not enter into this debate until 1981, when Martin Evans and Mathew Kaufman first derived embryonic stem cells at the University of Cam19

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bridge, a discovery that earned them a Nobel Prize. A stem cell is any cell that is able to differentiate into multiple other cell types and regenerate itself. An embryonic stem cell (ESC) is a unique type of stem cell line that is cultured from the inner cell mass of a blastocyst. Due to the fact that a blastocyst must be destroyed in the process of creating an ESC line, many people believe the process is unethical. However, as I will discuss later, embryos that have already been created for in vitro fertilization (IVF) can be used for the purpose of creating ESC lines. While we should be cautious about the moral implications of stem cell research, the use of discarded IVF embryos for ESC research is acceptable because the potential benefits outweigh the possible moral problems.

bryo does not have the cognitive abilities of an adult, it has the potential to develop them, and one can argue that it is inhumane to deprive him or her of this. However, we know nothing about this potential human being. To some, this is precisely the reason that we should protect their right to exist, while to others, it means that the embryo does not deserve the same rights as a human child or adult. In Evangelium Vitae, Pope John Paul II provides one of the most well known treatises on the former opinion. He explains, “Right from fertilization, the adventure of a human life begins, and each of its capacities requires time- a rather lengthy time- to find its place…”2 The argument is fundamentally Kantian. In the Journal of Biomedical Ethics, Katrien Devolder explains that, “The principle objection to [ESC research] is that the embryo…is used as a means to an end.”3 This view is a direct outgrowth of Kant, with a twist. Kant extends his categorical imperative only to “rational beings,” while opponents of ESC research extend it to all human life.4 Despite this crucial difference, the Kantian perception of duty and universal laws are aligned with the philosophical oppositions to ESC research. The applicable universal law is, “One should not kill a human.” Thus, if an embryo is a human, duty should prevent us from destroying it under any circumstance, regardless of the potential benefits. One of the most striking features of Kantian philosophy is its uncompromising nature. There can be no exceptions to a universal law, which is why ESC research is wrong if we were to accept the premise that non-rational humans are entitled to the same treatment as an adult human. More moderate opponents find ESC research itself morally questionable, but relatively innocent. However, they worry about a “slippery slope” that might end with the devaluation of human life. They also worry that if we are not careful, we might end up with science fiction horrors such as the world of Michael Bay’s film “The Island,” in which clones are grown to adulthood to serve as spare parts. With the current pace of scientific progress, this caution is prudent. It is a top down model of morality, because a general rule (we should not overstep our moral boundaries in the realm of science) is applied to a given case (modern ESC research in the United States). This deductive reasoning process is well suited to clear-cut cases in which a general rule is easily formulated. Unfortunately, with ESC research, we are in uncharted moral territory. The top-down model does

Arguments Against ESC Research Most opponents of ESC research consider the five-day old cluster of cells known as the blastocyst to be a human being. This argument is scientifically sound, in that the blastocyst does contain the full genetic complement of H. Sapiens. It is a primitive stage of development that is conserved in all mammals, and yet it can certainly be defined as human. However, there are reasonable arguments for defining “human” at several other stages of development. Birth is the moment that a fetus becomes physically independent from its mother, making it an attractive candidate event for defining humanity. Others take it further and argue that it is not mere existence (either in the womb or in the outside world), but rather sentience, consciousness, and self-awareness that give a child the right to status as a human. However, this definition is difficult to apply, given our limited understanding of infant psychology and development. Furthermore, although an infant or child is physically independent from its mother, it requires care and attention at varying levels throughout its growth and development. Essentially, these more complex definitions of humanity invite varied interpretations, and do not support a strict, clear-cut starting point for humanity. Thus, given our current knowledge, the simplest and least arbitrary definition of human is at the moment of conception. With this fact in mind, the ethical problems inherent in destroying an embryo become apparent. If we accept this definition, it is, essentially, destroying human life. To opponents of ESC research, the many differences between the blastocyst and an adult human being are irrelevant. The most common explanation for this is the potentiality of the embryo. Although an em1 “The Nobel Prize in Physiology or Medicine 2007.” Nobelprize.org. Web. 19 Nov. 2010. <http:// nobelprize.org/nobel_prizes/medicine/laureates/2007/>.

2 Paul, John. Encyclical Letter Evangelium Vitae. Washington, D.C.: United States Catholic Conference, 1995: 60. 3 Devolder, K. “Creating and Sacrificing Embryos for Stem Cells.” Journal of Medical Ethics 31.6 (2005): 367. 4 Kant, Immanuel, and Mary J. Gregor. “Groundwork of the Metaphysics of Morals.” Practical Philosophy. Cambridge University Press, 2006: 69.

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not take the specifics of the case into account, which can make the philosophy difficult to apply convincingly to this particular issue. Ultimately, all opponents of ESC research either believe that destroying the embryo is tantamount to murder, or that even if the point is debatable, we should err on the side of caution.

an embryo the same moral status as an adult human.5 Thus, we can avoid the problem of the “slippery slope” simply by limiting our ESC research to those embryos that do not have any potential for physical or emotional pain. Many countries in Europe already implement regulations that ban the use of embryos that are older than 15 days, but freely allow the use of younger embryos. This is a reasonable safeguard, and it does not hinder the use of IVF blastocysts, since they fall into this category by definition. Due to current governmental regulations, most ESCs in the United States are derived from discarded in-vitro fertilization (IVF) embryos. In IVF, many excess embryos are generated to increase the chances that an infertile couple will be able to carry a successful pregnancy. Opponents of ESC research often condone the use of IVF without realizing that most of these embryos are destroyed or frozen indefinitely after the IVF procedure is complete. Thus, from the utilitarian standpoint, we can argue that the best course of action is to put these embryos to good use. In utilitarian reasoning, we calculate the possible outcomes of any given action, and select the one that results in the maximum benefit (happiness) to the involved parties.6 If we look at the case of an IVF embryo, the two possible outcomes both result in the eventual destruction of the embryo. Furthermore, there is no “unhappiness” on the part of the embryo because, as stated earlier, it cannot feel pain. Thus, the use of IVF embryos is morally sound in the utilitarian calculus. Utilitarian reasoning is a central tenant of modern democracy, and we use the concept in many of our daily interactions with society. To many moderate ESC opponents, it could make a difference if the embryos in question already exist, and are going to be destroyed or frozen in either case. This type of sacrifice is not generally condoned by utilitarianism, and rightly so. Some opponents of ESC research claim that the utilitarian logic on this issue is dangerous, and reminiscent of the Nazi attitude toward human test subjects. However, the crucial difference is that the destruction of the embryo causes no suffering to the embryos. There are many other misunderstandings that arise in the stem cell debate. However, these two points alone are enough to seriously undermine the logical reasoning of ESC research opponents.

Common Misunderstandings (Why Stem Cell Research is Acceptable) The stem cell debate is unusual in that it requires technical scientific knowledge to fully understand the issue. Certainly, the fundamental ethical issues should be examined with our consciences as well as our intellect. However, it is counterproductive to argue against a fictional problem. Here, I will address the most common misunderstandings in the ESC debate, and how they alter the arguments of ESC research opponents. First, many people are unaware of the developmental status of the embryo when the inner cell mass (which is used to create ESCs) is harvested. As this stage, the embryo is a ball of approximately thirty cells. There is no sign of a nervous system, and the embryo has not even developed the three primary germ layers. At this stage, there is no possibility that the embryo is capable of sentience, pain, or other feeling. Although this fact is irrelevant for the camp that believes that the destruction of any embryo at any stage is murder, it does have significant relevance to the worries over suffering or pain caused to the embryo. Due to the way that the ESC debate and the abortion debate have become inextricably entwined, it is crucial to recognize that the blastocyst from which ESCs are derived does not yet resemble a human in any way. It is important to balance the emotionally charged concept of “killing a child” with the scientific reality of the situation. In addressing the issue of the embryo’s status, we come back to the issue of rationality. Despite the Kantian slant to the rest of their reasoning, opponents of ESC research have discarded his tenet that only rational beings are entitled to the protection of universal laws. While Kant’s classification of “rational” beings is too stringent (it does not include animals, babies, and the mentally incapacitated), it is worth considering when we take into account that the blastocyst lacks the most basic sensory capacities. Peter Singer believes that we should ask ourselves why we value any given human life. Is it because they belong to our species? Or is it certain unique qualities of rationality and emotion that no other organism possesses? Singer argues that if it is the second, then we cannot blindly assign 22

Why Embryonic Stem Cell Research is Necessary Despite the many misunderstanding that arise in the ESC discus5 Singer, Peter. “The Moral Status of the Embryos.” Classic Works in Medical Ethics: Core Philosophical Readings. Ed. Gregory E. Pence. Boston, MA: McGraw-Hill, 1998: 85-86. 6 Mill, John Stuart, and George Sher. “What Utilitarianism Is.” Utilitarianism. Indianapolis: Hackett Pub., 2001: 267.

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sion, it is clear that we should proceed with caution even if we do decide that ESC research is morally acceptable. However, many ESC research opponents downplay the possible benefits of ESC research. Several current studies underscore the misleading nature of these omissions. After years of promising studies in rats, researchers from the Geron Corporation have begun human trials in the United States to treat paralyzed patients with ESCs.7 The ESCs are injected directly into the damaged spinal column, with the hope that the stem cells will be able to reform the damaged parts of the spinal cord. If successful, this would at least return partial motor function to paralyzed individuals. Results from this study will take years to gather. However, the research would not have continued to human clinical trials if the animal results had not been extremely promising. As this example clearly demonstrates, the practical value that human ESCs might have for society places their use squarely on the side of morality in terms of a utilitarian calculation. Furthermore, it is in the entire nation’s interest that we maintain the United States’ reputation for being a world leader in biomedical research. It is important to critically assess the morality of our actions in science, but we can do this without halting the process whenever we come across an ethical question. Ultimately, we cannot approach ethical questions in the scientific realm with rigid dogma and definition. Just as science is a constantly shifting and evolving field, our understanding of the related moral dilemmas must be open to change and reinterpretation. The most likely candidate to end, or shift, this particular debate is the development of Induced Pluripotent Stem Cells (IPSCs). IPSCs are created by genetically reprogramming human somatic cells to become pluripotent stem cells. This approach produces cells that are as useful as ESCs, and circumvents many of the moral issues surrounding the use of viable human embryos. Furthermore, since IPSCs for therapeutic purposes would be derived from the patient’s own cells, this technique could reduce complications from the immune response that might be more severe with the use of ESCs. If this technology were to be successfully developed further, it could eliminate the need for ESCs. However, there are significant challenges facing IPSC researchers. Until these issues are resolved, ESCs are the only way to move forward with the cutting edge of regenerative medicine.

7 Krassowska, Anna. “Geron Initiates Clinical Trial of Human Embryonic Stem Cell-Based Therapy | News Releases | Geron.” Web. 28 Nov. 2010. <http://www.geron.com/media/pressview. aspx?id=1235>.

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Works Cited Devolder, K. “Creating and Sacrificing Embryos for Stem Cells.” Journal of Medical Ethics 31.6 (2005): 366-70. Print. Ford, Norman M. The Prenatal Person: Ethics from Conception to Birth. Oxford, UK: Blackwell Pub., 2002. 5+. Print. Kant, Immanuel, and Mary J. Gregor. “Groundwork of the Metaphysics of Morals.” Practical Philosophy. Cambridge University Press, 2006. 61-81. Print. Krassowska, Anna. “Geron Initiates Clinical Trial of Human Embryonic Stem Cell-Based Therapy | News Releases | Geron.” Web. 28 Nov. 2010. <http://www.geron.com/media/pressview.aspx?id=1235>. Mill, John Stuart, and George Sher. “What Utilitarianism Is.” Utilitarianism. Indianapolis: Hackett Pub., 2001. 256-78. Print. “The Nobel Prize in Physiology or Medicine 2007.” Nobelprize.org. Web. 19 Nov. 2010. <http://nobelprize.org/nobel_prizes/medicine/laureates/2007/>. Paul, John. Encyclical Letter Evangelium Vitae. Washington, D.C.: United States Catholic Conference, 1995. Print. Singer, Peter. “The Moral Status of the Embryos.” Classic Works in Medi cal Ethics: Core Philosophical Readings. Ed. Gregory E. Pence. Boston, MA: McGraw-Hill, 1998. 83-91. Print.

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The Public’s Role in the Reproductive Cloning Ethical Debate Benjamin Long ‘12 Yale University Throughout the long-standing debate over human cloning, cloning supporters have often lamented public involvement in the cloning discourse. They argue that the public has misconstrued cloning, specifically the relationship among nature, nurture, and human identity. Because of the public’s irrational fear that cloning could generate ‘Hitlers’ or lines of designer babies, cloning supporters such as Richard Dawkins and Arthur Caplan suggest that the cloning debate should be left to scientists and experts, not to the public. However, cloning technology would be used by the public, not solely by cloning experts. Public misperceptions of cloning could motivate individuals to clone for irrational or unscientific reasons. In addition, the debate over cloning is not solely a scientific one, but rather one that entails a discussion of motives to clone, the ethical implications that arise from such motivations, and the people’s right in a democracy to shape government policy and control taxpayer funding of cloning research. This paper discusses the necessity of public engagement in the cloning discourse and how public input could help advance, rather than stifle, scientific progress. In the same year that the novel Boys from Brazil (1976) set off public concerns of human cloning, another controversial scientific breakthrough was in its infancy. Magnetic Resonance Imaging (MRI), now widely accepted, was a revolution in the science of medical imaging. It has helped doctors more accurately diagnose diseases such as breast cancer, multiple sclerosis, and coronary shunts, leading to early treatment of patients and increased survival rates – all without ionizing radiation.1 Writer Tom Philbin listed the MRI as one of the hundred greatest inventions in history.2 Five scientists who helped develop the technology were awarded Nobel Prizes for their work. In its early years, however, it was known as Nuclear Magnetic Resonance Imaging, or NMRI. The dangers of nuclear weapons and nuclear power plant accidents led to negative public associations of the word ‘nuclear,’ causing some to question NMRI’s safety. Some scientists argued that despite public confusion, the 1 Smith, F. “The Value of NMR Imaging in Pediatric Practice: A Preliminary Report.” Pediatric Radiology. 13 (1983): 141-147. 2 Philbin, T. “The 100 Greatest Inventions of All Time: A Ranking of Past and Present.” New York: Kensington Publishing Corp., 2003.

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name should not be changed since public concerns were irrational and the word ‘nuclear’ was used to describe the prior uses of the technology to study atomic nuclei.3 Despite the opinions of these scientists, the NMR Commission of the American College of Radiology voted to drop the word ‘nuclear’ in 1983 stating that “the deletion of ‘Nuclear’ may be helpful in eliminating undesirable connotations in the mind of the public.”4 MRI has been widely accepted by the public and heralded ever since. As was the case with the initial debates over NMRI, cloning supporters have often lamented the general public’s view of cloning. Proponents of cloning argue that the public has misconstrued cloning, specifically misunderstanding the relationship among nature, nurture, and human identity. Many argue that because of these misunderstandings, the cloning debate should be left to scientists and experts, not to the public. One such opponent to public engagement in the cloning discourse, Richard Dawkins, criticizes a member of a cloning debate panel for arguing that clones would lack individuality. When commenting on the qualifications necessary to be included in the cloning debate, he asks, “Isn’t a certain minimal qualification in the IQ department desirable too?”5 In an MSNBC opinion article, bioethicist Arthur Caplan states that “the [public’s] push for a total ban on cloning rests on several myths and far-fetched scenarios that have gained way too much currency in Congress, the Oval office and in the media.”6 Caplan refers to the public’s erroneous perception that cloning could be used to recreate ‘Hitlers’ or ‘Husseins’. Because of this misguided view of cloning, Caplan argues that the public’s “myths should not be the basis of public policy.”7 Experts such as Dawkins and Caplan are correct in stating that the public sometimes misunderstands cloning. However, the cloning technology ultimately would be used by the public, not solely by cloning experts. Public misunderstandings could motivate the public to clone, even for irrational or unscientific reasons. Because the ethical debate related to cloning is not solely a scientific one, but rather one that entails a discussion of the motives to clone and the ethical implications that arise from such 3 Goldberg, S. “MRIs and the Perception of Risk.” American Journal of Law & Medicine. 33 (2007): 229-237. 4 Ibid. 5 Dawkins, R. “What’s Wrong With Cloning?” Clones and Clones: Facts and Fantasies About Human Cloning. Ed. Martha Nussbaum and Cass Sunstein. New York: W.H. Norton & Company, 1999. 5466. 6 Caplan, A. Cloning Ethics: Separating the Science from Fiction. MSNBC, 14 Dec. 2003. Web. 27 Mar. 2010. <http://www.msnbc.msn.com/id/3076920/ns/health-special_reports/t/cloning-ethicsseparating-science-fiction> 7 Ibid.

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motivations, public concerns should be considered in the cloning ethical debate. As Dawkins and Caplan suggest, confusion over the role of nature and nurture in shaping human identity has led the public to place too much weight on genetic determinism. Media representations of cloning have convinced the public that cloning would create a copy of an individual that would be completely identical, both genetically and behaviorally.8 A study conducted between 1985 and 1995 reported that 73% of American magazine articles had statements that attributed human traits to both environment and genome, 27% to the genome only , and 0% to the environment only.8 This study indicates that while most of the media attribute human traits to a mixture of nature and nurture, there is a definite lean towards genetic determinism. This tendency to overestimate the role of genetics in human development persists into the 21st century through contemporary television advertisements.9,10 A recent Coca-Cola advertisement portrays a man playing videogames who uses multiple clones of himself (who are of same age and physical appearance) to spend time with his girlfriend without interrupting his play.9 A Seattle Mariners advertisement portrays baseball player Ken Griffey, Jr. playing every single position simultaneously, with the opposing manager remarking: “I’m dead set against this human cloning thing.”10 While obviously meant to be humorous, media portrayal of reproductive cloning perpetuates the idea that identical copies of individuals can be made through cloning.11 Although the public may possess an incorrect view of cloning that places too much weight on genetic determinism, it is not the nature of the final clone product, but rather the motives for cloning that are the source of the public debate. Society emphasizes motive when ethically judging an action. For instance, while murder is seen as ethically unacceptable, killing an attacker in self-defense can be considered justifiable under certain circumstances, even though the end result is the same. For

example, a murder charge against a Sacramento resident was dropped after a surveillance camera proved that he was acting in self-defense.12 Similarly, motives are also important in determining the ethics of new reproductive technologies. Just as courts consider motive when determining whether a killing is justified (or should be classified as murder, manslaughter, etc.), national bioethics committees have determined that certain reproductive technologies are ethical, but only under certain circumstances for specific motives. In a 1999 report, the Ethics Committee of the American Society of Reproductive Medicine stated that Preimplantation Genetic Diagnosis (PGD) was not acceptable when used for non-medical reasons, and only permissible if used to prevent genetic diseases. The committee saw the motivations for PGD’s non-medical uses as ethically suspect, stating: “The distinction between medical needs and non-medical desires is particularly relevant.”13 They make the argument that individuals using PGD for non-medical reasons are motivated by gender or trait bias, whereas those using PGD for medical reasons simply want to improve the health of their offspring, a more ethically acceptable motivation. The public’s confusion over the characteristics of the cloning end product is frequently cited when arguments are made in favor of limiting the public’s role in the cloning debate. Dawkins chastises an individual whom he believes fails to understand the role of nature vs. nurture in the development of a clone:

8 Condit, C. et al. “An Exploratory Study of the Impact of News Headlines on Genetic Determinism.” Science Communication. 22 (2001): 379-395. 9 Coca-Cola. Advertisement. 27 Mar. 2010 < http://www.youtube.com/watch?v=O29zeHUwQeg> 10 Seattle Mariners. Advertisement. 27 Mar. 2010 < http://www.youtube.com/ watch?v=r1kesqDBXh0> 11 The belief in genetic determinism has limited itself not only to cloning, but has also spread into other debates, including immigration. In the best-selling book, The Bell Curve, Hernstein and Murray use a genetic determinism model to argue that America’s cognitive ability is facing dysgenic pressure from immigration. They make the assumption that immigrants with low IQs would also give birth to children with low IQs through a method of genetic inheritance: “[from] a faster generational cycle among the less intelligent and an immigrant population that is probably somewhat below the native-born average - the case is strong that something worth worrying about is happening to the cognitive capacity of the country” (364). The widespread popularity of The Bell Curve indicates that the public has largely accepted the idea of genetic determinism.

The representative of a rival religion…was frankly confused. He voiced the common fear that a human clone would lack individuality. It would not be a whole, separate human being but a mere soulless automaton. When I warned him that his words might be offensive to identical twins, he said that identical twins were quite a different case. Why? Because they occur naturally, rather than under artificial conditions. Once again, no disagreement about that. But weren’t we talking about ‘individuality’ and whether clones are ‘whole human beings’ or soulless automata? How does the ‘naturalness’ of their birth bear upon that question?14

Dawkins saw the religious leader as ‘confused,’ but the leader was correct in pointing out the distinction between clones and twins, although ‘naturalness’ might not have been the best term. To answer Dawkin’s question, the naturalness of twins is a reference to their randomness: no one can really predict or choose to give birth to twins. Thus, the motives 12 Furillo, A. Murder Charge Dropped in Fatal Oak Park Shooting. The Sacramento Bee, 2 Apr. 2010. Web. 8 Apr. 2010. < http://blogs.sacbee.com/crime/archives/2010/04/murder-charge-d.html> 13 The Ethics Committee of the American Society of Reproductive Medicine. “Sex Selection and Preimplantation Diagnosis.” Fertility and Sterility. 72.4 (1999): 595-598. 14 Dawkins, 1999.

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for giving birth to twins are simply to have children. In contrast, except in cases in which cloning is used solely for fertility reasons, reproductive cloning is driven by the desire to have an identical genetic copy of a living individual: if not, another child could have been produced much more easily through natural pregnancy. Recent news reports have highlighted the motive for cloning. In 2002 Clonaid announced that they had successfully cloned the dead children of two different parents.15 Although later shown to have been fabricated, the story was controversial because of the fear that children would become manufactured for a particular use, in this case as an exact replacement for a specific dead child. Similar concerns have been discussed in ethical debates about genome ownership, and whether Albert Einstein or Michael Jordan would have to consent before being cloned.16 In this case, an individual would clone a famous person in order to have a child that they believe would achieve success in a given field. The concern is not over whether the clone of Michael Jordan or a deceased relative would become an exact copy of their respective parents (they probably wouldn’t), but rather the motives behind choosing to clone. Identical twins come into the world with a clean slate – no person with their same genome has existed in the world before, so no expectations are given. In contrast, a person is cloned with the idea that they will become like their genetic parent, and the parent would rear the child with this expectation. This burden of expectation is already placed on the naturally-born children of successful parents, who are sometimes expected to follow in their parents’ footsteps. The burden would only be magnified for a genetically identical cloned child. It is this burden, along with the fear of child manufacturing that has driven the cloning ethical debate. As experts on their own motivations, the public should be invited to participate in discussions on cloning policy. Even if ethical concerns about child manufacturing are deemed insufficient to override what some believe is a ‘right to reproduction,’ the public should still participate in the cloning debate, which is not limited to discussions about the legality of cloning, but which would also, inevitably, entail a discussion of whether or not the government should expend taxpayer money in support of cloning research. For instance, policy makers could decide to legalize cloning but prohibit federal funding for cloning because of ethical concerns from the public. This scenario

resembles the federal policy on abortion. The federal government has held that abortion (in the first trimester, at least) is legal, mainly by the 1973 Roe v. Wade Supreme Court ruling overturning a Texas state law criminalizing abortion. However, the federal government has also held the policy that federal funding should not be used to pay for abortions. In 1976, the House of Representatives passed the Hyde Amendment, which prohibited federal funding of abortion. Federal funding of abortions was also a major issue in the healthcare reform debates in 2009 and 2010. The Affordable Health Care for America Act of 2009 passed the House largely because of the Stupak-Pitts Amendment, which prohibited federal funding of abortions. President Barack Obama also signed Executive Order 13535 in 2010, which reaffirmed the Executive Branch’s policy that federal funds would not be used for abortions. The abortion case study highlights the distinction between determining the legality of a procedure and determining whether that procedure should qualify for federal funding. The rationale for the abortion policy is that although the government has held that the ‘right of privacy’ protects a mother’s right to abort her fetus, it acknowledges that public concern about the ethics of abortion is significant. In the United States, public funds have long been used to support scientific and technological research. The National Institutes of Health and the National Science Foundation are independent federal organizations that use taxpayer money to fund medical and scientific research. Since federal research grants are mostly taxpayer funded and determined by Congress, the public has held an important role in determining what types of research acquire funding. In 1995 the U.S. Congress banned the funding of embryonic stem cell research, over ethical concerns of the destruction of embryos.17 Public input could help determine if cloning research would receive federal funding. However misguided the public may be, in a democracy the public has the right to participate in the ethical debate to assert their rightful control over taxpayer funding of cloning research. Proponents of cloning might argue that public influence in the cloning debate could lead to a ban on funding for cloning research, which would stifle scientific advancement; however such input could actually lead to scientific innovation. In the stem cell research debate, moral concerns over the destruction of embryonic stem cells led President George W. Bush to push for a ban of federal funding for embryonic stem cell research

15 CNN. Clonaid Claims It Has Cloned A Baby Girl. CNN Breaking News, 27 Dec. 2002. Web. 27 Mar. 2010. 16 Kass, L. “The Wisdom of Repugnance.” The New Republic. 1997: 17-26.

17 Cimons, M., & L. Birmingham. “Scientists Appeal to Revoke Funding Ban on Embryo Research.” Nature Medicine. 5 (1999): 6.

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in 2001. Many scientists at the time saw the ban as an impediment of scientific research. However, in 2007 Science Magazine reported that multiple researchers had successfully created pluripotent cells from skin cell lines.18 This technique can allow scientists to conduct stem cell research without the ethical concerns of destroying embryonic stem cells. Had public concern not been heeded, it is unlikely that scientists would have attempted to develop methods to form stem cells from sources other than embryos, and much of the public would have remained resistant to it. In this case, public debate allowed the formation of an improved technology that was more universally accepted, likely increasing the funding prospects for this form of research. Despite concern on the part of prominent bioethicists that religious leaders and the public are muddying the cloning ethical debate, the public has a crucial role in policy discussions. Although the public may confuse nature and nurture and not understand the details of cloning, their incorrect views will allow policy makers to recognize motivations for cloning and to attempt to solve ethical problems arising from them. From this information, policy makers could decide to permit cloning in certain cases where motivations are less controversial, for example to create a genetically related child for an infertile couple. Beyond determining the legality of cloning, the public has the right to influence the appropriations of their tax dollars, and their input could help lawmakers decide whether to fund cloning research with federal money. Those in favor of limiting debate to ‘scientific experts’ fear an irrational public getting in the way of scientific progress. This may not be the case, however. Even though a majority of the public currently opposes cloning, discussions could perhaps yield recommendations that will make reproductive cloning more ethically acceptable, increasing the likelihood of federal funding for cloning research. Recent trends also suggest that the public may be warming to the idea of cloning. Widespread advertisements like the ones for Coca-Cola and the Seattle Mariners indicate that the public may not find cloning as morally repugnant as previously thought. A moratorium on cloning could be imposed, allowing the public to gradually accept cloning as the future of reproductive technology. As we argue the merits of allowing public involvement in the debate over cloning, we should remember the early days of the MRI. Despite irrational public fears about MRI safety, scientists heeding public concerns were able to allay fears and gain widespread support for the new imaging technology, 18 Vogel, G. & C. Holden. “Field Leaps Forward with New Stem Cell Advances.” Science. 5854 (2007): 1224-1225.

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leading to improved diagnoses and the saving of countless lives. We shall see if the scientific and bioethics community will choose such a path for the cloning debate. Works Cited Caplan, A. Cloning Ethics: Separating the Science from Fiction. MSNBC, 14 Dec. 2003. Web. 27 Mar. 2010. Cimons, M., & L. Birmingham. “Scientists Appeal to Revoke Funding Ban on Embryo Research.” Nature Medicine. 5 (1999): 6. CNN. Clonaid Claims It Has Cloned A Baby Girl. CNN Breaking News, 27 Dec. 2002. Web. 27 March 2010. Condit, C. et al. “An Exploratory Study of the Impact of News Headlines on Genetic Determinism.” Science Communication. 22 (2001): 379-395. Dawkins, R. “What’s Wrong With Cloning?” Clones and Clones: Facts and Fantasies About Human Cloning. Ed. Martha Nussbaum and Cass Sunstein. New York: W.H. Norton & Company, 1999. 54-66. The Ethics Committee of the American Society of Reproductive Medicine. “Sex Selection and Preimplantation Diagnosis.” Fertility and Sterility. 72.4 (1999): 595-598. Furillo, A. Murder Charge Dropped in Fatal Oak Park Shooting. The Sacramento Bee, 2 Apr. 2010. Web. 8 Apr. 2010. <http://blogs. sacbee.com/crime/archives/2010/04/murder-charge-d.html> Goldberg, S. “MRIs and the Perception of Risk.” American Journal of Law & Medicine. 33 (2007): 229-237. Herrnstein, R. & C. Murray. The Bell Curve: Intelligence and Class Structure in American Life. New York: Free Press, 1994. Kass, L. “The Wisdom of Repugnance.” The New Republic. 1997: 17-26. 33

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Philbin, T. “The 100 Greatest Inventions of All Time: A Ranking of Past and Present.” New York: Kensington Publishing Corp., 2003. Smith, F. “The Value of NMR Imaging in Pediatric Practice: A Preliminary Report.” Pediatric Radiology. 13 (1983): 141-147. Vogel, G. & C. Holden. “Field Leaps Forward with New Stem Cell Advances.” Science. 5854 (2007): 1224-1225.

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Split Decisions: The Ethics of Separating Conjoined Twins Maria Punchak ‘11 Georgetown University On April 7, 2010 Hassan and Hussein Benhaffaf underwent a nearly 20-hour separation surgery at the Great Ormond Street Hospital for Children in London. At the time of surgery, the twin boys were just over 5 months old, making the invasive procedure extremely risky. By undergoing this operation the previously conjoined twin boys have been “freed” from each other. However, the availability of these new and exciting possibilities is contingent upon the boys’ survival. Although this surgery has, so far, been successful, it does raise the ethical question concerning separation surgeries: if conjoined twins who are separated do not survive, will the surgery have been worth performing? Two lives would be lost, along with the pain and suffering of the twins’ parents, yet nothing would be gained. This paper examines the ethical issues raised when considering surgery to separate conjoined twins and will defend the view that separation surgery should be considered mandatory only in emergency cases. Separation surgery may be deemed “non-emergency” in three cases: situations in which one twin will be saved at the expense or death of the other, circumstances when both twins have a good chance of survival but will experience significant health issues for the rest of their lives, and finally settings in which both twins are likely to survive and not suffer from health complications. In these nonessential cases, surgery without its receivers’ consent should not be permitted. Rather, it should be postponed until the twins can make their own informed decision concerning their separation. Introduction: The History of Separation Surgery and the Dilemmas it Raises The surgery to separate conjoined twins seeks to physically disjoin monozygotic twins who were born connected in one or more parts of their bodies. The earliest records of an attempted separation have been documented in Constantinople in 945; however, the first successful separation of twins, who were bonded by a band of flesh, occurred in 1689 in Germany.1 Since then, it has been a rare procedure. Because twins

1 Quigley, C. (2003). Separation Surgery. In Conjoined Twins: An Historical, Biological and Ethical Issues Encyclopedia. Jefferson, NC: McFarland & Company, Inc., Publishers, 148-152.

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are often bonded in complicated ways, and share body parts and organs, separation surgery is difficult and in some cases, impossible. In addition to strict medical reasons for undergoing separation surgery, parents of conjoined twins have opted for surgery based on psychosocial reasons. The fact that separation surgery is strongly encouraged as the norm for conjoined twins raises fundamental moral questions. An attempt to create individuals who are “normal” by the standards established in our society often hurts the conjoined twins by creating “terribly incomplete individuals.”2 As a result of surgery, twins are frequently debilitated, may lack some of the body parts possessed by ordinary individuals and are forced to struggle with disability and chronic health issues. Thus, the desire to create “normal” children who fit into society must be considered along with the physical maleficence that the separation surgery will almost certainly cause. Another moral issue raised by this contested surgery concerns the autonomy of the children on whom the surgery is being performed. The consensus among surgeons mirrors the philosophy of Heinz Rode, a pediatric surgeon at Cape Town Children’s Hospital, who stated “that Siamese twins are born to be separated.”3 However, this view ignores the desires of the conjoined twins themselves. It is unclear whether conjoined twins, if allowed to remain as such until the age of consent, would decide to undergo this highly invasive procedure. In fact, there has only been one case in which the pair of conjoined twins, Laden and Laleh Bijani, who were allowed to make the decision when they reached the age of maturity in their country, chose separation surgery for themselves.4 In recent years, it has become the norm for parents to immediately request separation surgery in order to save their children from ostracism. Nonetheless, the issue of patient autonomy is an essential one to consider. While the parents of conjoined twins are responsible for their children’s well-being, unless one or both of the parents had at one point been conjoined and undergone separation surgery, they can never access the personal, physical experience of being born conjoined. While parents may be tempted to follow what most others have chosen before them – separation surgery – their decision will not take into consideration the actual desires of their conjoined children. Separation surgery at this early stage in the children’s lives will rid the children of their human agency, disallowing them to make one of the

most intimate, personal choices a human being can make: what to do with his or her body.

2 Raffensperger, J. (1997). A Philosophical Approach to Conjoined Twins. Pediatr Surg Int , 12, 249-255. 3 Quigley, 2003. 4 Dreger, A. (2004). Split Decisions. In One of Us: Conjoined Twins and the Future of the Normal. Cambridge, MA: Harvard University Press, 51-82.

Classes of Separation Surgery Cases and their Moral Permissibility Since there is no homogeneity regarding the conditions of potential separation surgery cases, several factors must be taken into consideration when determining if such surgery is prudent. There are four distinguishable categories of cases that are likely to arise in the consideration of separation surgery, and the moral permissibility of surgery varies based on the circumstances within each class of cases. The first is an emergency situation: separation surgery is performed because medical personnel have determined that, without immediate medical intervention, both twins will die immediately. In these circumstances, the doctor(s) should undertake all necessary measures in order to save at least one of the infants. If medical personnel have determined that only one of the infants is dying, measures must be taken to save this twin, even if the other is healthier. Regardless of the circumstances in this case, saving one of the twins should not be done at the expense of the other. Instead, the doctor must first attempt to separate the twins in a way that gives the twins equal chances of survival. However, if the situation is becoming dire and the chances of saving both the twins dwindle, the surgical team must redirect its effort in an attempt to save one of the twins’ lives. The other three cases considered in this paper pertain to contexts when the surgery is performed in non-emergency circumstances. In all of these non-urgent cases, it is morally incorrect to perform the surgery. The first of these classes of non-emergency cases involves conducting a separation surgery in situations in which medical personnel have determined that it is likely that one of the twins will be saved at the expense of the life of the other twin. Such a surgical procedure is ethically impermissible because questions that arise as to which twin should be sacrificed for the benefit of the other. In many of these surgeries, the more robust twin – the twin possessing more of the internal organs – is slated for survival. It is morally wrong to select one of the twins to be saved by receiving all of the organs that were meant for the pair of infants. Conjoined twins are born to share the intertwined body that they have been given. Multiple religious texts including the Talmud, the central basis of Judaic thought, state that one may not commit murder for selfpreservation. If we take the modern egalitarian perspective that all lives have equal value, killing one twin in order to save the life of the other twin

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becomes immoral since the life of the more robust twin has been placed on a higher level than that of the less robust twin. The second non-emergency situation addresses cases in which a separation surgery is performed on twins who both have a good chance of survival but will suffer from tremendous disabilities and chronic health issues after surgery. The ethical impermissibility of surgery in these circumstances becomes particularly evident when it has been observed that “nonemergency separation surgeries almost never improve the health of either twin[;] [I]n fact, they often leave the children’s bodies-at least temporarily and often permanently- much more ill and impaired than before, and they may significantly reduce life expectancy.”5 Surprisingly, surgeons define a separation surgery to be successful if it results in the mere short-term survival of at least one twin.6 Such a conclusion is fundamentally flawed as there are a multitude of examples wherein twins were left with severe health and quality of life issues post separation surgery thus calling into doubt the “success” of the surgery. For instance, the results of one such “‘successful’ separation […] left one twin with no legs and stomas for stool and urine. In another [operation], each twin had one leg, genitourinary and gastrointestinal complications, and was growth retarded.”7 Such examples highlight the moral impermissibility of performing surgery in these cases. The third and final non-emergency category of cases concerns when separation surgery is performed resulting in the survival of both of the twins without the outcome of significant health issues later in life. In such cases, the decision whether to undergo surgery or not must be awarded to the conjoined twins. In cases where waiting does not risk the life of either twin, “the presumption should be to defer surgery until the twins can decide for themselves” whether or not they would prefer to be separated or remain conjoined.8 Common Justifications for Surgery in Non-emergency Cases and their Flaws It is clear why separation surgery should not be delayed when the twins are in an emergency situation since both of their lives are at stake. Additionally, the second case of non-emergency surgery presented in the previous section, where the likelihood of the twins possessing lifelong 5 Dreger, Split Decisions, 2004. 6 Quigley, 2003. 7 Raffensperger, 1997. 8 Wasserman, D. (2006). Conjunction and Separation: Viale relationships, Equitable Pairings. In Cutting to the Core. Lahman, MD: Rowman & Littlefield Publisher, Inc., 127-140.

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debilitating health issues as a result of the separation surgery, is clearly a situation where surgery should not be performed. However, the first and third non-emergency scenarios established in the previous section of this paper, where separation surgery should not be performed, are cases that are often faced with several justifications for why surgery should still be performed. One commonly presented rationalization is that it is morally permissible to save the life of one twin by sacrificing the weaker infant when the weaker twin will succumb to complications caused by its physical frailty. The surgery is therefore justified because at least one of the twins will be saved, whereas if the surgery is put off, both of the twins are likely to die. By carrying out the surgery, the doctors attempt to make the best of a difficult situation and are providing the parents with at least one healthier twin. By forfeiting the life of the other twin, the doctors are also preventing the inevitable suffering that the twins will incur when their health deteriorates due to the burden of the sickly twin. Although this justification for surgery may seem logical, it is inherently immoral to sacrifice a weaker twin in order to save the life of the hardier twin. There are two outcome possibilities in such a surgery. If the surgeons decide to save the more robust twin, they intentionally end the life of the feebler twin and harvest his or her organs. If the surgeons, together with the parents, opt to not interfere with the conditions of either of the children, they end up passively killing them both by allowing them to die. Although society considers it morally troubling if doctors do not attempt to perform a surgery when they are able to save one twin, it can also be observed that they are simply allowing nature to run its course and are “refraining from [performing the surgery] on the grounds of incompetence.”9 Therefore, because the surgeons lack the ability to save both of the twins, they are not justified in killing one of the twins in order to save the other. Separation surgery requiring the sacrifice of a twin can be compared to the following thought experiment originally presented by Raanan Gillon. In this hypothetical situation a set of twins is born, and one of the twins, who possesses both a healthy heart and lungs, will unavoidably die in a few months regardless of intervention for other reasons.10 The other twin has a feeble heart and poor lungs, and will also 9 Cowley, C. (2003). The Conjoined Twins and the Limits of Rationality in Applied Ethics. Bioethics , 17 (1), 69-88. 10 Gillon, R. (2001). Imposed Separation on Conjoined Twins- Moral Hubis in English Courts? J. Med. Ethics, 27, 3-4.

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die unless she is provided with a compatible heart; however, only her identical twin’s heart and lungs are compatible.11 Some individuals believe it is appropriate to sacrifice a twin who will inevitably die, thus taking away the small amount of time he or she has been given to experience life, in order to save the other, healthier twin. However, it would be outrageous to entertain that this is permissible in the case of identical twins, who are not conjoined, invalidating the use of this logic on conjoined twins. Human life has intrinsic value, and thus it is morally impermissible to kill one person in order to save another. Despite their physical bondage to one another, conjoined twins are two separate human beings and therefore, there is “no reason for treating them according to a unique moral framework simply by virtue of their conjoinment.”12 Surgery in cases where there is no urgency is often further justified by stating that it is morally impermissible to deny parents to chance to “normalize” the appearance of their conjoined children by having them undergo separation surgery.13 Parents legally exercise complete authority over their infant children in every medical situation, because in most societies, children under the age of 18 are judged to be incapable of making an informed decision concerning any medical situations they face. This applies to decisions of conjoined twins regarding whether they wish to undergo separation surgery. Separation surgery is encouraged as the norm for twins born conjoined, especially during the first few months of the infants’ lives in order to enable the siblings to “assimilate into the world of the normal.”14 In most nonemergency separations, the main reason for undergoing the surgery is not physiological; “it is the desire to make children [who] have very unusual anatomies look fairly usual, [thus] freeing them from the stigma of conjoinment”15 and enabling them to enjoy aspects of life they would otherwise be unable to enjoy. Because the parents are trying to improve the quality of life of their children, and shield them from ridicule and torture, it can be argued that when surgery is performed in non-emergency situations and it is expected that they will not suffer from long-term health repercussions, the surgery is morally justifiable. The rebuttal to the aforementioned objection is that separation surgery is not always pursued by parents as a result of their concert with

the welfare of their children. Parents oftentimes strive to make sure their conjoined twins undergo separation surgery so that “they can resolve their own identity crisis.”16 Parents of children born with unusual anatomies do not possess the same unusual characteristics as their children and thus lack insight on the experiences of those with the anomalies. They therefore, are unable to understand what actions to take in this situation. According to Dreger, “they seek surgical fixes because of the genuine anguish they are feeling about their own identities” as parents.17 Because of these parents’ limited experience in dealing with other children possessing unique anatomies, “they know only how normal parents are supposed to behave, but they can’t be normal parents, if they do not have a normal child.”18 Additionally, most conjoined twins who have been given the chance to grow up and decide if they wish to have surgery performed, “do not choose normalizing surgeries for themselves” and “report being comfortable in their bodies. When asked, they even say that their usual state is preferable.”19 Although it may be tempting to say that conjoined twins feel this way because they have adapted to their situation and that they would have lived more fulfilled lives had they been separated, “we should be reluctant to dismiss or second guess the self-appraisal of people with lives that differ greatly from our own, [both] culturally and anatomically.”20 People can live fulfilling lives in a variety of circumstances, so it should not be hastily concluded that conjoined twins will live terrible lives due to their condition. People born without this condition have no knowledge of what it is like to live as a conjoined twin. This lack of knowledge may lead society to jump to conclusions that are not necessarily true, as can be witnessed by the testimonies of conjoined twins, who have not been separated at birth. Accounts provided by the conjoined twins themselves highlight their happiness despite their unusual situations. Surgery to separate conjoined twins, in cases where postponement does not put the lives of either of the twins at risk, should be deferred until the twins can make their own informed decision.

11 Ibid. 12 Dreger, A. (2004). What Sacrifice. In One of Us: Conjoined Twins and the Future of the Normal. Cambridge, MA: Harvard University Press, 83-112. 13 Quigley, 2003. 14 Ibid. 15 Dreger, Split Decisions, 2004.

Conclusion There are multiple important categories of cases that can be imagined for the separation of conjoined twins. This paper has attempted to explain why separation surgery is morally permissible only when 16 17 18 19 20

Ibid. Ibid. Ibid. Ibid. Wasserman, 2006.

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performed in an emergency situation. In non-emergency situations, performing a separation surgery that may result in one twin being saved at the expense of the death of another twin should not be allowed. Likewise, performing a surgery that will cause both or one of the twins to end up with severe health issues must also be prohibited. Even if a separation surgery will result in both twins surviving without suffering health complications, the surgery should not become the accepted norm. Instead, it must be postponed until the twins can make an autonomous decision concerning their separation. If it is indeed decided that separation surgery must be performed, it is important to consider the tremendous surgical risks that are involved with the procedure. For instance, anesthesia for conjoined twins, either for separation surgery, or for MRI or other evaluation procedures is an enormous challenge to pediatric anesthesiologists since they need to care for two patients at the same time.21 Important considerations that must be taken into account are the crossed circulation systems of the twins, distribution of blood volume throughout the intertwined body and the effects of these issues on anesthesia. Separation surgeries take a tremendously long amount of time, thus making the application of anesthesia for such extraordinary lengths difficult for anesthesiologists and dangerous for the patients.22 Recent technological advances in radiologic imaging, computer modeling, improved surgical anesthesia techniques have all improved survival rates; however, separation surgery is still a long way from being safe.

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Works Cited Chalam, K. S. (2009). Anaesthetic Management of Conjoined Twinsâ&#x20AC;&#x2122; Separation Surgery. Journal of Anaesthesia , 53 (3), 294-301. Cowley, C. (2003). The Conjoined Twins and the Limits of Rationality in Applied Ethics. Bioethics , 17 (1), 69-88. Dreger, A. (2004). Split Decisions. In One of Us: Conjoined Twins and the Future of the Normal. Cambridge, MA: Harvard University Press, 51-82. Dreger, A. (2004). What Sacrifice. In One of Us: Conjoined Twins and the Future of the Normal. Cambridge, MA: Harvard University Press, 83-112. Gillon, R. (2001). Imposed Separation on Conjoined Twins- Moral Hubis in English Courts? J. Med. Ethics, 27, 3-4. Quigley, C. (2003). Separation Surgery. In Conjoined Twins: An Historical, Biological and Ethical Issues Encyclopedia. Jefferson, NC: McFarland & Company, Inc., Publishers, 148-152. Raffensperger, J. (1997). A Philosophical Approach to Conjoined Twins. Pediatr Surg Int , 12, 249-255. Wasserman, D. (2006). Conjunction and Separation: Viale relationships, Equitable Pairings. In Cutting to the Core. Lahman, MD: Rowman & Littlefield Publisher, Inc., 127-140.

21 Chalam, K. S. (2009). Anaesthetic Management of Conjoined Twinsâ&#x20AC;&#x2122; Separation Surgery. Journal of Anaesthesia , 53 (3), 294-301. 22 Ibid.

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Examination of the Moral Permissibility of Human Cloning and Testing for Late-Onset Genetic Diseases in Children Andrea Rea ‘12 University of Washington This essay examines in depth Dena Davis’ application of the right to an open future argument to the cases of testing for late-onset genetic diseases and human cloning, as it is presented in her book Genetic Dilemmas. Davis argues that human cloning, if undertaken for logistical reasons such as biological reproduction in the absence of other options, may be morally permissible. She then argues that testing for late-onset genetic diseases in children is not morally permissible, based on the potential of certain genetic knowledge to limit the child’s future options in terms of career, marriage, and reproduction, to name only a few. Davis’ argument contains an inherent contradiction in claiming that it is morally permissible for parents to obtain knowledge of their children’s genetic makeup: to biologically reproduce by genetic cloning gives the parent intimate details of a child’s genetic makeup, much the same as testing for a late-onset genetic disease. Because Davis’ primary concern in the right to an open future argument is the preservation of a child’s future rights, and both cases have the potential to limit a child’s future options equally, we must address this inconsistency. I argue that in order to do this, we must treat these cases as being more similar than Davis proposes in our evaluation of their moral permissibility, and redefine the criteria used to determine when certain cases may be qualified as exceptions. In her book Genetic Dilemmas, Dena Davis analyzes the balance between parental autonomy and future child autonomy in several different scenarios involving the use of genetic technology. Her aim is to convince the reader that parents should be limited in the choices they are able to make for their children: in short, parents ought not to make decisions which might restrict the child’s future rights and ability to become a completely autonomous adult1. Specifically, I will examine Davis’ application of the right to an open future argument to human cloning and testing for late-onset genetic diseases in children. In these two cases, her application 1

Davis, D. Genetic Dilemmas. New York: Oxford University Press, 2010.

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of the argument leads to conflicting outcomes, specifically concerning the moral permissibility of parents knowing details of their children’s genetic makeup. I will argue that this inconsistency is unacceptable, and we therefore must revise Davis’ proposed standards for cloning and testing for late-onset genetic diseases to resolve the inconsistency. Before I can take a closer look at Davis’ application to specific cases, I must first explain more clearly what she means by a child’s right to an open future. The right to an open future argument states generally that parents should endeavor not to make choices for their children (or future children) that might “deliberately to substantively” restrict the children’s future options or liberties2. What Davis generally means is that parents should not deliberately make decisions that would result in permanent or irrevocable limits to the child’s future options. According to Davis, a child should be free to make decisions in adulthood concerning things such as career, religion, and marriage, among others, and any decision made by the parents which would deliberately limit these “momentous pieces”3 of the child’s adult life would be seen as a violation of the child’s right to an open future. Davis often focuses on the intentions and the deliberateness of the parents or parents-to-be in her application of the right to an open future argument. For example, if two people decide to have a child together and happen to have a disabled child, whose future options are limited by the very nature of the child’s disability, Davis sees no problem in this4.Where she draws the line is if two people take deliberate steps to ensure they have a child with a specific trait, whether that trait is anything from gender to a disability. Not only would the selection of a specific trait limit the options available to the child in the future permanently and irrevocably, the parents would have acted deliberately. In her discussion of human cloning, Davis has chosen to focus exclusively on a method called somatic cell nuclear transfer. In this process, a somatic cell (which is any cell in a person’s body other than sperm or eggs)5 is taken from a donor, and the genetic material (DNA) is removed. This DNA is then placed in an enucleated human egg cell, which is just an egg cell lacking a nucleus. The egg cell is then, in theory, capable of growing into an entirely new person, who is genetically identical to the donor person6. The following two examples summarize Davis’ application of the 2 3 4 5 6

Ibid. Ibid. Ibid. Ibid. Ibid.

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right to an open future argument to cloning. For the first example, let’s assume there are two individuals who wish to make use of cloning for the purpose of duplicating another already-existing person. They obtain the DNA from the donor and it is inserted into an enucleated egg. Nine months later, the genetic clone is born. In this case, the parents have taken deliberate actions to guarantee they have a child with a specific genetic makeup, and will presumably treat the child with bias based on the child’s genetic makeup. Specifically, let’s assume this child was cloned from a professional basketball player. The parents might be very inclined to encourage or even force their child to play basketball, in the hopes that the child achieves the same level of skill as the donor. In this case, the parents are deliberately attempting to limit the child’s right to an open future, particularly the child’s future career choices, as a result of their knowledge of the child’s genetic makeup. The parents might end up end up forcing the child into a future in which the child is not truly happy, based on their preconceived ideas of what the child should be. The child who was cloned from the basketball player might really love to play the piano, but his parents might choose not to enroll him in piano lessons and instead buy him a basketball hoop and ball. After all, the parents who have cloned the child from the basketball player have made an enormous financial investment, presumably in hopes that their child would reach the same level of skill as the donor. As such, this would be a violation of the child’s right to an open future and therefore morally impermissible. For the second example, let’s assume that a lesbian couple desires to make use of cloning in order to produce a biologically related child. One partner could donate the DNA and the other could donate the egg, which would result in a child that had biological input from both parents7. Davis views this situation differently than the previous, because the parents are operating simply under the desire to have a child in general, and are not attempting to have a specific child8. Therefore, Davis feels it is less likely that the couple in this example would oppress their child based on their knowledge of the child’s genetics. The preceding examples illustrate the two primary motivations for cloning, according to Davis. The first example depicted a duplicative motivation. This would entail a person wishing to make use of cloning for the purpose of duplicating someone else9. Davis’ concern is that if parents choose to clone for duplicative reasons, then it is almost inevitable that

the parents will mistakenly assume the clone to be just like the donor in every way, and will pressure the child into certain life choices based on the donor. Because the parents have made such a large financial investment in guaranteeing they have a child with certain traits (e.g. height), they might feel somewhat of a sense of entitlement to have a child that plays basketball, like the donor. There is potential, perhaps a predisposition, for a blatant disregard for the child’s individuality and preferences. This would be a gross violation of the child’s right to an open future10. In the example given above, the parents would be foreclosing upon the child’s future career choices by forcing the child into basketball. The second example illustrated what Davis calls the logistical motivation for cloning. Because cloning is the only available option for this couple to biologically reproduce, Davis is more willing to accept the parents’ inevitable knowledge of the child’s genetics because she doesn’t feel that in this case the parents will be oppressive toward their child based on this knowledge11. She also concludes that because we readily help many couples who would otherwise be incapable of reproduction, through methods such as in vitro fertilization, that cloning for logistical purposes could be morally acceptable. She believes that since the parents are not cloning for duplicative purposes, they will be less likely to infringe on the child’s right to an open future by mistakenly pressuring the child into following in the path of the donor12. Davis then applies the same fundamental concepts of the right to an open future argument to testing for late-onset genetic diseases. There are certain genetic diseases, such as Huntington’s disease, for which symptoms don’t typically appear until later in life. However, disease status and disease carrier status (in the case of recessive diseases) can be determined early in life by a simple genetic test. Davis argues that it is not in a child’s best interest to pursue testing for late-onset genetic diseases or even disease carrier status, as it has the potential to significantly limit the child’s right to an open future. For instance, knowledge of disease status may cause a variety of problems including depression, difficulty obtaining insurance coverage, and difficulty in finding employment13. If a person is known to possess the gene for Huntington’s disease, insurance companies may be reluctant to offer him coverage, or even exclude him from coverage based on some pre-existing condition clause. Employers, should they become aware of his Huntington’s status, may refuse to offer him a job, knowing

7 8 9

Davis, 2010. Ibid. Ibid.

10 11 12 13

Davis, 2010. Ibid. Ibid. Ibid.

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that in a few years, he may become incapacitated as a result of the disease. There is also the potential for a profound impact on self-image, and deep depression may result14. He may live his life knowing that he is at risk, but a positive test confirms his worst fears. Most people surely would not seek out a prediction of when they are going to die, but testing for a late-onset genetic disease is essentially tantamount to a prediction of a premature death. Knowing that he may die relatively early in his adult life may influence the types of decisions he makes in his life and he may live recklessly, feeling that he has nothing to lose. Additionally, he may observe himself constantly, in fear and anticipation of the onset of symptoms15, causing him much unproductive worry and grief. The knowledge has the potential to limit his future in terms of career, reproductive, and marriage partner choices, as well as his future access to healthcare. Davis believes that testing should be delayed until the child reaches adulthood, or at the very least adolescence, when he can then make the decision for himself whether or not he wishes to be tested. Despite the wide availability of testing, Davis cites that only about fifteen percent of adults choose to avail themselves of it16. Davis also has concerns regarding confidentiality; she believes that a child’s disease or disease carrier status should be protected, in case the child wishes to handle that information in a way that may not be in line with her parents’ belief system once she has reached adulthood17. Let’s say, for example, a child is tested and found to be the carrier of a recessive genetic disease. Her parents may feel that she should take care to marry someone who is not a carrier of the same disease, so that she is guaranteed not to have a child afflicted by the disease. However, when she becomes an adult, she may fall in love with someone who incidentally happens to be a carrier of the same disease, and may wish to marry him, despite her parents’ beliefs. If her parents know of her disease carrier status, they will be inclined to pressure her into not marrying this specific person; however, if her parents do not know her disease carrier status, she would be free to marry whomever she chooses. While some parents may only wish to offer advice to her, other parents may attempt to intervene and prevent her from marrying the person she chooses. In this case, the parents’ knowledge of her disease carrier status has the potential to significantly limit her right to an open future. By identifying the child as a carrier for a specific disease, the parents may unwittingly carve out the

child’s future path, with little to no input from the child herself. She may also suffer from problems with her self-image as a result of the knowledge and potential stigma associated with the condition itself. My fundamental objection in these two applications of the right to an open future argument lies in the inconsistency in whether it is morally permissible for parents to know intimate details of their child’s genetic makeup. In the case of testing for late-onset genetic diseases, Davis argues that the child’s genetics should be held in confidence, allowing the child the freedom to make choices for herself based on her genetic information once she reaches adulthood18. She feels that if the parents know details about their child’s genetics, they will be more likely to pressure the child into certain decisions. However, in the case of human cloning, Davis’ acceptance of logistical cloning implies that it is alright for the parents to know the intimate details of their child’s genetic makeup as long as it is the only option available to the parents for biological reproduction. Since both testing for late-onset genetic diseases and cloning involve knowing details of the child’s genetic makeup, both have the potential to result in very similar consequences for the child in question. I argue that if we must conclude that it is morally impermissible to know the child’s genetics for the sake of diagnosis, we must also conclude that it is morally impermissible to know the child’s genetics for the sake of biological reproduction. In either case, the parents may not intentionally use their knowledge for the purpose of restricting their child’s future options, but there is a good possibility they do so unintentionally. We can’t say that all parents who undergo genetic cloning for the purpose of biological reproduction will not use the knowledge of their child’s genetics to limit the child’s future options. We also can’t say that all parents who subject their child to testing for late-onset genetic diseases will use the knowledge to limit their child’s future options. To clarify the inconsistency in Davis’ argument further, consider the following example. Say that two prospective parents who wish to use cloning to reproduce are carriers of a specific disease, let’s assume TaySachs. In order to create a child that is biologically related to them, one of them will have to provide the donor DNA, which means the child would also become a carrier of Tay-Sachs, a fact of which the parents would be fully aware. In the case where the child is known to be a carrier of TaySachs because he was cloned from his carrier father, or in the case where a child conceived via sexual reproduction was tested and found to be a carri-

14 15 16 17

Ibid. Ibid. Ibid. Ibid.

Davis, 2010.

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er of Tay-Sachs, the result is the same. In both cases, the parents know the child’s carrier status, and the child may no longer be free to make decisions for himself, such as choosing a marriage partner, based on his carrier status in adulthood, without being subjected to pressures from his parents based on their belief system. While his parents may feel he should actively avoid marrying a woman who also carries the gene for Tay-Sachs, he may wish to marry such a woman. He may experience a great deal of depression when faced with his parents’ rejection of his choice in marriage partner. Knowledge of disease carrier status may also cause his insurance company to raise his premiums, in anticipation of the possibility of him conceiving offspring affected by the disease. This example illustrates the point that a child cloned from a person who carries the gene for a genetic disease faces many of the same problems as the child who learns of his disease status from a test: depression, difficulty obtaining insurance coverage, and limitations in his choice of a spouse, or the decision to reproduce. In response to this, Davis could argue that although the consequences may be similar for both children, the moral difference between the two may be defined by the deliberateness of parents’ actions in obtaining the information about their child’s genetics. The right to an open future argument weighs the deliberateness of the parents’ actions heavily. In the case of testing for late-onset genetic diseases, the parents deliberately seek information about their child’s genetics. In the case of logistical cloning, the parents do not deliberately seek information about their child’s genetics; they seek only to biologically reproduce in the absence of any other options. Parents who do not deliberately seek this information will likely be less inclined to use the information to pressure their child into making certain decisions, for instance, concerning marriage and reproduction, or any variety of other things. For example, a couple wishing to make use of cloning for the purpose of having a child will be less concerned with the genetics of the child, and more preoccupied with simply having a child in the first place. However, the parents who seek their child’s genetic information deliberately do so presumably in order to make decisions about their child’s future; there is really no other reason for seeking this information. Parents who seek to have their child tested for a late-onset genetic disease do so specifically for the purpose of either making decisions for their child, or for pressuring their child into making certain decisions for himself once he has reached adulthood. For example, the parents who have their child tested for Huntington’s disease may do so with the intention of discouraging the child from reproducing in adulthood and running

the risk of passing on the disease. This subtle distinction supports Davis’ initial application of the right to an open future argument to both of these cases, and is consistent with her original definition of the right to an open future argument. However, if in both cases the child’s future rights have the potential to be equally limited as a result of the parental knowledge, and our primary focus remains the preservation of the child’s future rights, then I argue that the deliberateness of parents’ actions in obtaining the information is actually irrelevant. The parents who gain knowledge of their child’s genetic information passively (as a result of cloning) are still just as likely to use that information to pressure the child into certain decisions, as the parents who have obtained the information deliberately through testing. In both cases, the child’s future options are restricted and the consequences are essentially the same. I am willing to accept Davis’ position that there may be some material benefits to cloning for logistical purposes, but not without acknowledging that there may also be some material benefits to testing for late-onset genetic diseases. I feel that if we accept that there are certain instances in which logistical cloning may be morally permissible, then perhaps there are also instances in which testing for late-onset genetic diseases may be morally permissible. What I believe may be in order is a logistical exception to testing for late-onset genetic diseases, much as there is a logistical exception for cloning. While Davis focuses on only the potential benefit or harm to the child or his future autonomy in testing for late-onset genetic diseases, Sevick et al. argue that one must take into account the pros and cons for the entire family. They note that there are indeed some important logistical exceptions in which it may be in the family’s best interest for the child to undergo testing. As an example, they cite the case of a grandparent constructing a will; the grandparent requests knowledge of his grandchildren’s disease status, so that he may appropriate funds accordingly in his will19. In this case, the children, if found to be positive for some late-onset genetic disease, would obviously benefit financially by this information, and perhaps receive enough money from their grandfather to pay for the future care they would likely require. Sevick et al. also make the argument that studies support the idea that openness about disease and risk in families has often led to improved family communication and ability to cope20. As an example, they note that children can often intuitively sense when something is wrong, even if the

19 20

Sevick, Nativio, and McConnell 2005. Ibid.

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parents attempt to act as though nothing is wrong. The literature indicates that when parents are open with their child about disease and risk in the family, the child’s anxiety levels are often reduced21. Knowledge of disease status in some cases can be a relief to the individual and the family22. This relief may come in the form of a negative diagnosis for many, who will not have to spend the majority of their lives in fear of developing symptoms or identifying themselves as “at risk”. Even Davis acknowledges that for some people who wait until much later in life to be tested, a negative diagnosis can be nearly as devastating as a positive one, simply because they have spent their entire lives identifying themselves as “at risk”, only to find that the worry was over nothing23. Sevick et al. point out that early testing prevents people from building their identities around the idea of being “at risk”24. For those who receive a positive diagnosis, they will have adequate time to plan for their future care. Further, in the case of Huntington’s, some variants of the disease are early-onset and can begin to show symptoms in childhood. Sevick et al. note in the case of early-onset variants, testing the child for Huntington’s would actually be beneficial for planning the care the child will likely require before he reaches adulthood25. In order to implement an exception in testing for late-onset genetic diseases, we would need a principled way to determine who would qualify for such exceptions. It is important to acknowledge, as Sevick et al. do, that not every child will be psychologically prepared to deal with the results of testing26, and therefore I feel that testing should be tightly regulated, just as logistical cloning would need to be. Each child should be carefully evaluated professionally to determine their developmental stage prior to the commencement of any form of genetic testing. We must be sure that the child is capable of certain reasoning abilities before undergoing testing, by evaluating their relative emotional maturity and ability to comprehend ideas such as illness and death. While Sevick et al. feel that the parents are the best judges of whether or not their child is prepared27, I feel that this alone is insufficient and that thorough professional evaluation is necessary as well. It might be of benefit to counsel the parents prior to testing as well, to make sure they understand to the fullest extent possible the impact

that testing could have on their child. To illustrate what might qualify as a logistical exception, consider the following example. Say a young parent has come to learn that the gene she carries for Huntington’s disease typically shows an onset of symptoms earlier in life than the usual variety; symptoms may begin to show as early as childhood or as late as perhaps the third decade. She hasn’t experienced any symptoms yet, but she is still early in her third decade. She has a child, and she wonders if her infant has inherited the gene as well, and if there is a possibility that symptoms may appear earlier for the child than for her. She decides that it would be in the best interest of her family to know early if the child is positive for the disease, because if the child does begin to show symptoms early, her family will need to be prepared to care for the child. Knowing in advance may afford her precious time to make arrangements for her child’s future care. This is further complicated if the woman happens to be a single mother, because her child’s disease status may influence her decision on who would be best fit to take over the care of her child once she begins her inevitable decline. Exceptions to testing for late-onset genetic diseases should be able to demonstrate that the testing offers overall benefit for the family as a whole or the child (e.g. in the arrangement of future care), which outweigh the risks of harm to the child associated with the testing. The level of urgency in obtaining the test results should also be considered; for cases in which there is no beneficial reason to pursue testing early in life and prior to the child reaching an age when he is capable of making the decision for himself, testing should generally not be pursued. In cases where early testing would be beneficial to the family or child, the child should be properly evaluated by doctors or psychologists to determine if the child is cognitively capable of understanding disease and death. Additionally, the parents should be counseled on the risks of harm to their child prior to testing being pursued. It may seem at this point that the logistical exceptions for cloning are more pressing than for testing. However, it is necessary to recognize that in the case of testing, we are dealing with a child who already exists. We must be prepared to consider that in certain cases there may be compelling reasons to subject the child to testing, ultimately for his benefit. In contrast, the discussion of cloning ultimately considers something that is for the parents’ benefit (e.g. having biological children), because the child in question does not even exist yet. In practice, there are probably fewer cases which may qualify as logistical exceptions to testing for late-onset ge-

21 22 23 24 25 26 27

Ibid. Ibid. Davis, 2010. Sevick, Nativio, and McConnell 2005. Ibid. Ibid. Ibid.

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netic diseases than logistical exceptions for cloning, but it is important that we recognize that these cases do exist so we are prepared to handle them when they arise. Therefore, I propose we reevaluate the application of the right to an open future argument to the case of testing for late-onset genetic diseases in children. It seems more reasonable that we should assess the reasons for parents seeking to have their children tested for late-onset genetic diseases, similar to how Davis proposes we assess the reasons of prospective parents for seeking to reproduce through cloning. There would most certainly be cases where knowledge of disease or carrier status would prove not only to be beneficial to the child, but also the family as a whole. As Sevick et al. point out, in the case of Huntington’s disease, approximately fifty percent of families would find relief in knowing that their child was not after all positive for the Huntington’s gene28. It would be beneficial for us to expand the literature on the effects of testing for late-onset genetic diseases on both children and their families, by conducting further studies. Since current literature seems to suggest that there may be more benefit to it than Davis initially gives credit29, I feel this is worthy of further investigation. I find it is usually the case that most rules have reasonable exceptions, and I think this very much applies to both cloning and testing for late-onset genetic diseases. Works Cited Davis, D. Genetic Dilemmas. New York: Oxford University Press, 2010. Sevick, MA, Nativio, DG, & McConnell, T. “Genetic Testing of Children for Late Onset Disease.” Cambridge Quarterly of Healthcare Ethics, 2005: 47-56.

28 29

Sevick, Nativio and McConnell 2005. Ibid.

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Marxian Principles of Human Flourishing in the Modern Age of Technology and Biomedicine Tom M. Thomas ‘11 University of California, Los Angeles The essential question that must be addressed today in the midst of great technological and scientific advancement is “Are we better off as a society with the apparent progress all around us?” The information technology era that we find ourselves in today provides us with a myriad of tangible advancements that can be said to improve our lives now and progress us towards a better tomorrow, but it is paramount that we take the time to analyze and search for any unexpected consequences of technological growth. Marxian social philosophy provides the perfect medium in which to conduct such an analysis. Marx considers the essence of human individuals and the nature of our interpersonal relations within the constructs of society. The basic argument to be heard is that the definition of our very selves and the nature of our social interaction should not be altered as a result of technological progress. It is at times difficult to fully realize the moral and ethical ramifications of certain scientific advancements when restricted to the scientific considerations. By understanding the nature of human flourishing at its core, we are better able to interpret the underlying effects of new age advancements in science, most notably in human genomics. Introduction Science and technology are at the forefront of our society today. Much that we do deals with progress, research, and development in the ever-growing technological sectors. However, the basic principles of ethics and morality shouldn’t change as a result of new technologies and the heart of modern debates in ethics and social morality lies on this precise idea. Modern advances in biotechnology and biomedicine, especially in the field of genetics, have opened the door to a mecca of new possibilities: the question remains whether the door opened a treasure chest of knowledge or a Pandora’s box. In the light of this controversy in social philosophy it is important to fully understand the basics of human interaction in order to make accurate judgements on human flourishing. Karl Marx, though often noted as a political philosopher, provides invaluable insight into elements of social philosophy relevant to our modern bioethical debate in his 1844 55

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Manuscripts. In essence, Marx posits that in our daily lives we take decisions that have unintended consequences, which then combine to create large-scale social forces which may have an utterly unpredicted effect. He states that humans are naturally social beings, and therefore society is the essential “unity of man with nature.” The decisions we make as a society should take into account the nature of our social relations and the potential consequences. Marx’s greatest argument against the capitalist system is that it fundamentally builds constructions that are in conflict with our human, social essence. This is the argument that can be extended today to the realm of modern genetic science. We can consider the four principle mechanisms of human alienation from the Marxian discussion and apply these mechanisms to the modern bioethical debate. The four principle mechanisms of human alienation discussed by Marx are:

associate with this product once it has passed, though the factory benefits from the production of this item. As a matter of fact, the factory will benefit more as the worker produces more product, while the worker thinks less and less of the actual product of his labor. The labor becomes a means of procuring some means of survival within the system and the worker is detached from the product of his work altogether. Despite the mechanistic character of this image, the factory worker motif is applicable to our modern consideration of genetic intervention. If considering this Marxian system of alienation described above, genetic intervention brings one more consumer product into this world, the human individual himself. Genetic intervention simply presents itself as potentially developing into another consumer choice, further establishing the mechanism of alienation from product, the product being the individual. In a world where human individuals could possibly be altered or modified in the hopes of establishing some sort of enhancement, the individual himself becomes the object or product of labour. In principle, man is alienated to this product and cannot use this product as a tool of self-expression. Therefore, the idea of genetically intervening in the “production” of human individuals not only objectifies the human person but also significantly distorts the individual as a mirror of himself.

Alienation from product Alienation from the act of production Alienation from the species-being Alienation from other human beings The First Mechanism of Alienation Marx argued that to achieve true human flourishing, we as individuals must first overcome the different mechanisms of alienation in order to express our full humanity in relation both to nature and one another, and framed this argument within the subtext of alienated labour. Marx defines alienation as the estrangement of humans from aspects of human nature. This human nature consisted of the particular set of vital drives and tendencies than man expressed, and therefore alienation can be said to be a state in which these human drives and tendencies are stunted to some degree. As the worker produces more, he becomes more alien to the object of his labor, his product. This objectification of labor establishes what Marx calls “the loss of and subservience to the object, and the appropriation as alienation.” What does this mean in the greater scheme of things? Let us consider the example of a modern factory worker. The factory worker comes to work daily and begins his line of work, which is usually a specific task within the larger framework of the factory. Let us assume he works at an automobile factory. The product of his labor is the automobile, a product that this worker will most likely pass on through the system without considering it beyond the scope of his work. The factory worker does not 56

Yuppie Eugenics This notion of being able to develop an enhanced human individual using genetics and biotechnology has been recently termed “Yuppie Eugenics.” Eugenics refers to the study of or belief in the possibility of improving the qualities of the human species or a human population, especially by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics). Yuppie Eugenics is in a sense genetic intervention focused primarily on genetic enhancement in order to produce progeny most advantageously suited for this world. Yuppie Eugenics goes beyond the call for intervening in addressing human ailment and disease by obliging the use of genetic enhancements to bring about more perfect persons. There is however a strong arm of critics who argue this idea of enhancing the genome through selective intervention is only dream that cannot be achieved. This opposing viewpoint can be seen in a 2002 article in Z Magazine titled “Yuppie Eugenics” by Harvard professor Ruth 57

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Hubbard and Stuart Newman from the New York Medical College. According to Hubbard and Newman, Yuppie Eugenics simply “builds on the mirage that applications of genetics and biotechnology will be able to make us more perfect.” The arguments held by yuppie eugenicists are similarly echoed by those who favor genetic intervention in the name of procreative beneficence. Julian Savulescu, the Uehiro Professor of Practical Ethics at the University of Oxford, is one of the premier proponents of the procreative beneficence argument for genetic intervention. Procreative beneficence argues that parents are morally obliged to do everything in their capacity to provide the best possible chance for their progeny, which includes intervening genetically if it would prove to most advantageous for the progeny. Savulescu argues that many “non-disease genes” can affect the likelihood of an individual leading the best possible life, therefore, it is morally justifiable to use genetic intervention to enhance these non-disease genes and provide the best possible life. This enhancement is in addition to genetic intervention targeted at deleterious genes that an individual may possess. Savulescu goes on to say that individuals in all good reason should use information that may be available in reproductive decision-making. Let us reconsider the Marxian mechanism of alienation of the product. If we define a product as the finished object of our labour, and through genetic intervention (labour) we reproduce an enhanced individual, we can justifiably categorize that individual as the product of genetic engineering. Marx points out that we as human beings are in principle detached from our product. This principle, when extended to human genetic engineering would imply that engineered progeny stand alienated from the paternal generation of individuals. A strict Marxist determination would consider genetic intervention a threat to the flourishing of a human individual. A more modern interpretation of more traditional Marxian principle can be seen through the social philosophies of German philosopher Jürgen Habermas. In his book The Future of Human Nature, Habermas first differentiates genetic intervention into therapeutically focused and enhancement focused. Therapeutic genetic intervention is justifiable under the premise of liberal morality, whereas genetic enhancements cannot be morally justifiable. According to Habermas, three major focus points indicate that genetic intervention, excluding that for therapeutic purposes, cannot be morally justifiable. First, the programmers, those exacting the intervention, essentially impose their own personal preferences upon the individual they are “enhancing.” The alteration of the genetic identity of an individual basically knocks down any notion of equality between members

of a society. Some members are given the right to alter the identity of others, making them superior to those being altered. One of the basic tenets of the Marxian liberal society is the presupposition that all individuals are equal. Secondly, the “subjective self-perception” of the programmed will be affected by knowing of ones existence as one programmed by another. Finally, the society that accepts the practice of genetic intervention as commonplace indicates the society relinquishes its grasp of morality and the liberal ideal therefore fails. In essence, the individual becomes alienated from the person he “creates” through genetic intervention.

The Second Mechanism of Alienation The second mechanism of Marxian alienation is that of the act of production, in this case, the act of reproduction. Why do we as human individuals reproduce? If we can create the perfect human baby through prenatal genetic modifications, what stops society from tailoring reproduction to satisfy the profit seeking goals of the system. The Marxian critique would be that genetic intervention allows the act of reproducing individuals becomes impersonal and benefit driven. Individuals would be tailored to produce the greatest amount and provide the greatest benefits to the society. Therefore the act of reproduction becomes a form of societal manufacturing. According to Marx, the markets direct our lives by dictating production as a function of profitability. Establishing genetic intervention as normalized practice would then allow the trends of society to determine what classification of individuals would be most profitable to that society. There are obvious problems with such a system, many of these echoing the first mechanism of alienation. The people who “manufacture” new individuals become desensitized to the object of their work, they see progeny as a product and reproduction itself becomes an impersonal means to that product. The society becomes debased from the structures of liberal morality and therefore falters from the liberal ideal. The Third Mechanism of Alienation The third mechanism of Marxian alienation is that between man and the species being. The species being was a term that was coined by Karl Marx when he discussed what he believed to be the closest thing to “human nature.” Marx did not believe in the traditional theory of a human nature as an entity that incarnated itself within a physical human body. Instead, Marx proposed a theory of “human nature” that was representative of the sum of social relations. Since social relations could change and ad-

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just with time and certain circumstances, Marx believed the species being is always determined in a specific social and historical formation, with some biological subtext. Once could consider the species being as a sort of aggregation of human natures within a particular society. With this in mind it easy is to understand why Marx believed humans were capable of making or shaping their own nature. An important question is whether we sacrifice the integrity of the species-being if we consider only genetic intervention in terms of individual reproductive liberties? In order to better answer this question it seems appropriate to discuss what Habermas terms the “species ethic.” Ethical issues dealt with “identity-forming beliefs that have to do with out self descriptions that guide our own identification as human beings...our self understanding as members of the species,” (pp 38-9) as opposed to moral issues that dealt with things that have to do with the just way of life and the just arrangement within society. Ethical questions therefore focused on considerations of who we are as human beings and how we define our lives and ourselves. In a society where all members maintain an “abstract morality of reason,” every individual establishes an ethical self-understanding, which we call the species-ethic. Recalling what Marx himself discussed in terms of human nature: “the human essence of nature primarily exists only for social man.” Marx establishes that man is a social being, and the human essence that he possesses is only a function of his social character. He goes on to state that “society is the completed, essential unity of man with nature,” and that “my own existence is social activity; what I make from myself I make for society, conscious of my nature as social.” This idea that the human essence exists as a consequence of human social interaction is fundamental to applying Marxian social philosophy to out modern discussion. What science does today is by its very nature, a social activity. What they discover and what they conclude is subject to the social constructions that they inhabit. Now reconsider the question of whether we sacrifice the integrity of the species-being if we consider genetic intervention only in terms of individual reproductive liberties? If we appeal to man’s human essence or human nature, we must appeal to a broader, social level because human essence can only exist on a broader social level. Therefore, we are not satisfying the true scope of the speciesbeing if we narrow our consideration to the individual reproductive liberties of an individual over that of the society at large. Reconsider previous points made about the affects on those who intervene and the effects on those who are genetically altered; it seems that these consequences arise when considerations of the community of individuals are relegated behind

the considerations of individual reproductive liberties. This holds especially true when considering the third consequence discussed earlier, the degradation of the liberal morality of the society as a result of normalizing something like genetic intervention practices.

The Fourth Mechanism of Alienation The fourth mechanism of Marxian alienation is that from other human beings. The alienation that results from the labour and production of material items essentially subordinates human interaction to the relationship between things. Human interaction becomes impersonal to the individuals involved. Therefore, this alienation converts the social relationships of men into relationships between property owners. The true conscious existence of man is social activity and social satisfaction, since man himself is a social being. By refusing the social aspect of man and the social needs of man’s daily existence, an impersonal chasm develops between individuals within a society. Is then the geneticization of the human individual simply reinforcing the alienation of man from man? Is not the reduction of men to genes in essence substantiating the inequalities present within society, especially in genetic intervention presents a clear choice for individuals to make? Richard C. Lewontin, a prominent American scientist who pioneered in modern genetic analysis and fathered the field of molecular evolution, also established himself in the field of social biology and evolutionary psychology. Lewontin has repeatedly voiced his concerns about the modern trend towards the oversimplification of genetics. How can we so easily reduce the most complex of human traits and characteristics to the scope of gene sequences in our DNA? In his book Biology as Ideology, Lewontin counters mainstream arguments for genetic determinism by explaining that much of the variation observed in nature is neither genetic nor environmental but rather attributable to random variable growth, something he calls developmental noise. Attributing variation to developmental noise is not, he argues, the same as saying the differences were coded in genes. Another determinist idea is that of individual capacities. Certain proponents of genetic determinism argue that every organism is the coupled result of both environmental and genetic factors; however, natural variation is a sign that organisms may have varying capacities of development. Lewontin not only counters that there is no substantial biology to back this theory but also explains the dangerous potential of such ignorantly based ideologies about an individual. Genetic variations exist everywhere in nature and as often is the case, no single variation can be

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said to be absolutely superior to another. Certainly particular genetic variations display greater success in specific environments, but that cannot posit a clearly superior or inferior trait. Therefore, organismal capacity is insufficient in accounting for variation. In Not in Our Genes, Lewontin along with fellow colleagues question much of the claimed heritability of human behavioral traits such as intelligence as measured by IQ tests. Lewontin even disregarded some of the lofty claims of the Human Genome Project under the premise that much that the HGP claimed simply assumed too much in the promise of the gene code. Lewontin analyzes the HGP in his book It Ain’t Necessarily So: The Dream of the Human Genome Project and Other Illusions, stating “There is no aspect of our lives, it seems, that is not within the territory claimed by the power of DNA... greatly promised advances have yet to be realized from the sequencing of the human genome” (176). Chapter 5 of this book begins with Lewontin defining fetish: an inanimate object worshipped by savages on account of its supposed inherent magical powers, or as being animated by a spirit. Lewontin provides this definition in the chapter aptly titled “The Dream of the Human Genome” with the apparent implication of making the comparison of the HGP with a sort of scientific fetish. Lewontin makes some very good points in this analysis. Certainly, there have been cases through the development of the genetic field where individuals have taken genes beyond the scope of their potential, in the attempts to substantiate certain social agendas with apparent scientific backing. When we reexamine the fourth mechanism of alienation that Marx details, it is possible to consider serious social ramification of allowing genetic intervention to become a commonplace practice. An inevitable consequence would be the geneticization of inequality within social systems. It is fundamentally evident that as people begin developing preferential selectivity for genetic character traits, there must also be some implicit selection against certain traits. In an equitable liberal system this imbalance in individual standards is impermissible in order to maintain stability. In this case, genetic intervention not only reinforces the alienation between men but also seems to scientifically substantiate the claim that genetic variability may indicate superior and inferior genes. There is a strong modern trend towards providing individuals a choice when dealing with genetic intervention, or what some term procreative liberty. Proponents argue that the freedom to deal with cases of genetic intervention should be counted among the several other liberties that democratic constitutions entitle to individuals today. In his 2003 posi-

tion paper in the American Journal of Law & Medicine titled “Procreative Liberty in the Era of Genomic,” philosopher John A. Robertson makes a lengthy case on the side of an individuals right to choose how to deal with genetic intervention on a case-by-case basis. Robertson claims that in fact genetic intervention presents prospective parents with better methods of ensuring that their offspring will “live satisfying lives and be able to produce and care for offspring themselves,” and goes on further to say “legal prohibitions on genetic screening of the health of prospective offspring would appear to be an unjustified violation of an individual’s procreative liberty” (460). Robertson tends to affirm much of the claims expressed by proponents of procreative beneficence while delineating a difference between traditional eugenic practice and what he calls “private eugenics” where genetic screening techniques to ensure a healthy child does not show the “abusive features” of earlier eugenic practices. Finally, in accordance with his claim of procreative beneficence, Robertson indicates that in cases of genetic intervention, the parents have a moral obligation to ensure the best chance for their offspring.

Conclusion Marxian social philosophy is aged and storied yet it still presents solid principles that have strong modern applications. The theory of alienated labour can be used to describe the modern debates about the roles of genetic science in a very modern liberal society. The fundamental idea that is conveyed today through the Marxist tradition as it pertains to this genomic era is a call for caution and moderation. Modern interpretations of this traditional message can be observed in the texts of Jürgen Habermas and even Richard Lewontin and the arguments are very clear. The social consequences of not showing restraint as the field of modern molecular genetics develops are important to assess and be aware of. Although proponents of genetic intervention argue on behalf of procreative beneficence and procreative liberties, the Marxist intellectual would advise to err on the side of caution and restraint.

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Works Cited Habermas, Jurgen. The Future of Human Nature. Cambridge, UK: Polity P, 2004. Lewontin, Richard C. Biology as Ideology. New York: Anansi P Limited, 1991. 16-37. Lewontin, Richard C. It Ain’t Necessarily So: the Dream of the Human Genome Project. New York: New York Review of Books, 2000. 135-186. Lewontin, Richard C., Steven Rose, and Leon J. Kamin. Not in Our Genes. New York: Pantheon Books, 1984. Marx, Karl, selections from “1844 Manuscripts” (Alienated Labor; Private Property and Communism) and from “The German Ideology,” in Karl Marx: Selected Writings, L. H. Simon (ed.), (Indianapolis and Cambridge: Hackett Publishing, 1994). Savalescu, Julian: 2001, “Procreative Beneficence: Why We Should Select the Best Children,” Bioethics 15: 5. Shannon, Thomas A., ed. “Genetics: Science, Ethics, & Public Policy.” Readings in Bioethics. Lanham: Rowman & Littlefield Inc., 2005.