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Bioethics in the Real World

European Association of Centres of Medical Ethics 21 st Annual Conference. Bioethics in the Real World. Institute of Biomedical Ethics University of Zurich Zurich, Switzerland 13-15 September 2007. Second Session: Bioethics Expertise in the Public Sphere 14 September 2007.

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Bioethics in the Real World

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  1. European Association of Centres of Medical Ethics 21st Annual Conference Bioethics in the Real World Institute of Biomedical Ethics University of Zurich Zurich, Switzerland 13-15 September 2007

  2. Second Session: Bioethics Expertise in the Public Sphere 14 September 2007 International Norms for Organ Transplantation Panel on “From Deliberation to Norm– Bioethics, Policy and Law” Alexander M. Capron University Professor University of Southern California Los Angeles, California, USA

  3. From Deliberation to Norm–Bioethics, Policy and Law This presentation will try to weave together: • Stages in the process of moving from deliberation to norm to policies & laws • Illustrated by work of two intergovernmental norm-developing organizations • In the context of developing national policies and laws on organ transplantation • With attention to the dual meaning of doing bioethics “in the real world”: the reality of the “coal face” and the world of politics

  4. From Deliberation to Norm–Bioethics, Policy and Law Stages in the process (with loops-back): • Issue identification (scandals & crises; academy) • Scholarly analysis • Deductive (principlist; deontological; virtue) • Inductive (consequences; internal consistency) • Public deliberation (within IGOs) • Norm formulation (within IGOs & critics) • Policy promulgation • Policy objectives and responsibilities • Legislation • Regulation (implementation; interpretation) • Adjudication

  5. 1. Issues Identified in the Real World • Basic investigations of organ transplantation: one hundred years ago • Pioneering work of Alexis Carrel (Nobel Prize 1912) • Post-WW II, further investigation & kidney transplants between identical twins • Development of immunosuppression • Reliance principally on living donors • First human-to-human heart transplant (1967) • “Definition” of death • Growing reliance upon organs from deceased donors • Supply never meets demand (waiting lists) • Transplantation becomes world-wide practice • 1980s: organ trafficking scandals

  6. 2. Scholars Analyze Issues • Living donors • Autonomy (altruism) vs. nonmaleficence • Risk to minors (limits to surrogate’s authority; “benefit”) • Deceased donors • “Definition” of death (accuracy; conflict of interests) • Consent: pre-mortem by donor; presumed; next-of-kin? • Waiting lists • Fair methods of allocation (medical vs. social) • What measures does the “shortage” justify • Commercialism • Autonomy (voluntariness) vs. nonmaleficence (exploitation of desperate, poor “donors” [vendors]) • Transplant tourism (internet advertising of “package deal” including donor, at “bargain” prices)

  7. 3. Public Deliberation: WHO World Health Organization 1987: concern over commercial trade (WHA 40.13) • Noted reports about commercial brokers & exploitation • Concern: transplantation benefits will be overshadowed 1989: global standards needed (WHA 42.5) • International movement of patients and physicians 1991: WHO Guiding Principles adopted (WHA 44.25) 2004: Update GP & collect more data (WHA 57.18) • 2003: Global Consultation on transplantation (Madrid) • 2004-2006: Series of meetings on cells, tissues, organs • 2006: Global Knowledge Base on Transplantation • 2007: Global Observatory (Spanish Ministry of Health) • 2007: Second Global Consultation (Geneva)

  8. 4. Formulating Norms: WHO 1991: Guiding Principles articulated norms • Underlying premise: need international standards • Deceased donors preferred (& separation of diagnosis) • Among living donors, related donors preferred • No commercial transactions in human body & its parts (& prohibition on advertising and on excess “fees”) • Equitable access to donated organs (vs. financial) 2008: Are norms maintained in revising GP? • Preference for deceased tempered by practice changes • Among living donors, wider door for unrelated • Commercial ban maintained, but what “incentives” allowed? (tangible vs. intangible recognition) • Activities transparent & scrutinized; privacy safeguarded • Quality, safety, efficacy assured for donors & recipients

  9. 3. Public Deliberation: UNESCO United Nations Educational, Scientific and Cultural Organization 1993: International Bioethics Committee established (& later, Intergovernmental Bioethics Committee) 1997: Universal Declaration on the Human Genome and Human Rights 2003: International Declaration on Human Genetic Data • Both relate to scientific research & UNESCO’s claim to be UN’s agency for philosophy and ethics • Brought in “human rights,” which IBC chair recognized is “an ideological framework that does not feature particularly prominently in professional bioethical analysis” (N. Lenoir & B. Mathieu, 1998)

  10. 4. Formulating Norms: UNESCO 2005: Universal Declaration on Bioethics and Human Rights • Rapidly prepared by IBC (2004-2005) • Revised substantially in IGBC & two meetings of meeting of “government experts” Aims to be “universal framework of principles and procedures to guide States in the formulation of their legislation, policies or other instruments in the field of bioethics” Also aims to “guide actions of individuals, groups, (etc.)”, “to promote respect for human dignity and protect human rights,” and to foster dialogue

  11. 4. Formulating Norms: UNESCO Apply following principles to organ transplantation: • “Human dignity, human rights and fundamental freedoms are to be fully respected.” • “The interests and welfare of the individual should have priority over the sole interest of science or society.” • “In applying . . medical practice . . . direct and indirect benefits to patients . . . and other affected individuals should be maximized and any possible harm to such individuals should be minimized.” • “The autonomy of persons to make decisions, while taking responsibility for those decisions and respecting the autonomy of others, is to be respected.”

  12. 4. Formulating Norms: UNESCO • “In applying . . medical practice. , human vulnerability should be taken into account. Individuals of special vulnerability should be protected and the personal integrity of such individuals respected.” • “The importance of cultural diversity and pluralism should be given due regard. However, such considerations are not to be invoked to infringe upon human dignity, human rights and fundamental freedoms, nor upon the principles set out in this Declaration, nor to limit their scope.” • “Solidarity among human beings . . . [is] to be encouraged.”

  13. 4. Formulating Norms: Problems UNESCO: • Far removed from the reality of the practices (“laws on bioethics” or “laws on health care” etc?) • Contradictory or imprecise guidance on real problems (dignity, autonomy, welfare of living donors; solidarity & benefits; culture of “gifts”) • Formulated in passive voice (“shall be respected”) • “Real world” of sovereign nations not wishing to be bound (declarations vs. conventions) “[A] mistake to assess with purely academic criteria [an instrument] which is . . . a kind of compromise between a theoretical conceptualisation made by experts and what is practically achievable given the political choices of governments.” (Andorno 2006)

  14. 4. Formulating Norms: Problems WHO: • What is ethical foundation of “Guiding Principles”? (Right to “the highest attainable standard of health” = not the absence of disease but total well-being?) • How can such principles balance universal norms against claims of cultural difference? My view: • Politics intrude everywhere: part of “real world”. • Norms formulated in context of specific “real world” problems are a better basis for moving to laws and policies that those that are formulated as general principles without reconciliation among their contradictions or ambiguities. • Specific approach risks ad hoc justifications.

  15. 5. Promulgating Policies Ministries of health play central role in policymaking • 50+ countries adopted laws giving effect to norms in 1991 Guiding Principles In current re-examination, new laws promulgated: • China: law adopted in 2006 sets standards • Requires licensing of transplant facilities (many closed) • Bans commercial transactions • Establishes criteria for deceased donor programme and equitable allocation of organs • Ending process of using organs from executed prisoners • Pakistan: law adopted in 2007 bans commercialism • Aims to restrict “transplant tourism”

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