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6. Conclusions and Recommendations
Pages 168-194

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From page 168...
... Ethical issues that have been left unresolved include: the nation's public health response to AIDS, research on fetuses and embryos, research involving RU486, research on the sexual practices of teenagers and adults and their link to sexually transmitted diseases, and the wide range of implications by findings by the Human Genome Project. The committee's initial charge was to analyze the nation's current capacity to anticipate, recognize, and respond to social and ethical issues arising from advances in biomedical science and technology.
From page 169...
... With this in mind, the committee agreed that it was actually addressing "developments" in biomedical science and technology. Spheres of Concern Finally, the committee recognized that not all ethical quandaries that have confronted society in the context of biomedicine have resulted from a single radical change or the introduction of a unique new technology.
From page 170...
... It is likely that health care reform will necessitate explicit ordering of priorities regarding health resources as well as newjudgments about rationing of expensive medical technologies. The empowerment of distinct social groups, discussed in Chapter 2, is also illustrative of an organizational change that can engender new social and ethical quandaries.
From page 171...
... In his background paper for this report, for example, Bradford Gray evaluated the President's Commission and the National Commission by examining the frequency with which the work of these bodies has been cited in court cases, the Federal Register, medical journals, and law reviews. He also solicited the opinions of former commissioners and staff of the two groups.
From page 172...
... In fact, partisan adherence to strongly held opinions on abortion played a major role in the failure of the Biomedical Ethics Board (BEB) and the Human Fetal Tissue Transplantation Research Panel (HPlVl'RP)
From page 173...
... . The HI-l~IRP, also described in Chapter 4, was convened in 1988 by the NIH and concluded that the use of human fetal tissue in transplantation research was acceptable public policy if certain guidelines were in place (Childress, 1991~.
From page 174...
... , which clearly enunciated the underlying ethical principles that should guide research involving human subjects. Whether or not due to National Commission reports, the incidence of gross abuse of research subjects appears to have diminished subsequent to their publication.
From page 175...
... One example is the Health Care Financing Agency, which is responsible for laboratory quality assurance in genetic testing; it must assure that the information given to the individual is accurate, since crucial decisions are often made on the basis of this information. The NIH Recombinant DNA Advisory Committee assures that present and future gene therapy research involving human subjects is undertaken appropriately.
From page 176...
... In facing contemporary social and ethical quandaries stemming from developments in biotechnology, society now has a richer capacity for deliberation and a deeper pool of expertise than was available as few as 10 to 20 years ago. The modern bioethics movement is now in its fourth decade.
From page 177...
... Ongoing changes in the structure of the health care system, in combination with focused national efforts at health care reform, are creating new * By "deliberative capacity" the committee means some formal assignment of persons and resources that can make possible the gathering of persons to deliberate in an impartial and informed way on specific ethical issues.
From page 178...
... One advantage of a national deliberative capacity is the authority and credibility with which it is imbued, and which make it better able to reflect on and account for the interests of the disadvantaged in these deliberative efforts. Nongovernmental Orga~zadons and Individuals The committee considered the current and potential roles of individuals and nongovernmental organizations grassroots efforts, hospitals, institutional review boards, professional societies, and health professional educational institutions—in responding to social and ethical issues raised by biomedical developments.
From page 179...
... Professional Organizations The committee believes that professional societies, such as organizations of health care providers or scientists within a field, have an obligation to provide professional guidelines for practitioners and patients dealing with new technological or organizational developments. The committee recommends that organizations of biomedical professionals establish ethics committees that can be easily mobilized to respond to social and ethical issues as they are identified.
From page 180...
... This may well be a difficult mandate, but the committee notes that professional societies, as representatives of professionals themselves, have derivative obligations to speak out, and especially if developments that over advantage to some actually worsen the lot of others who are already seriously disadvantaged. Hospital Ethics Committees Preliminary evidence indicates that hospital ethics committees provide many useful support functions for staff, patients, and their families
From page 181...
... This sort of knowledge will aid in the design and evaluation of similar ethics committees that may accompany health care reform. Institutional Review Boards As discussed elsewhere in this report, the committee believes that past experience with IRBs has been important and salutary, but that the present structure and role of IRBs should be evaluated and, if necessary, modified.
From page 182...
... Health Professional Educational Institutions As part of the remarkable growth in numbers of individuals trained in academic bioethics, the curricula of health professional schools have begun to reflect the critical role of social and ethical considerations in the education of health professionals. The committee is convinced that continued integration of these concepts into health professional education will ultimately help caregivers relate effectively to patients who are faced with difficult decisions stemming from technological developments.
From page 183...
... The committee also urges increased efforts to integrate social and ethical issues in biomedicine into the curriculum of undergraduate and graduate health professional programs. The State Level States need to play an active role in defining a capacity for ethical deliberation in biomedicine given their oversight of professional certification, medical practice, health care financing, and legal liability.
From page 184...
... Because states are also the primary locus for family law, public health law, malpractice provisions, and criminal law, states should play an important role in stimulating public discussion and resolution of such issues as the use of reproductive technologies; laws and regulations concerning the "definition" of death and foregoing life-sustaining treatments; the practice of assisted suicide and active euthanasia; public health measures involving screening, contact tracing, and quarantining for infectious diseases; screening programs to detect either the presence of genetic disease or susceptibility to diseases such as cancer or heart disease; the procurement and allocation of organs for transplantation; and so on. State mechanisms can also channel consensus into the particular legislative form that is appropriate for and acceptable to citizens of a particular state.
From page 185...
... Oregon showed a willingness to deal with the complexities of prioritizing health care services; the state was also able to develop a public process that included grassroots input unlikely to be replicated at this time at a national level. Third, no matter how well a national commission might frame its policy recommendations, these will in any case have to be implemented at the state level.
From page 186...
... Specific examples of advisory bodies located within agencies have been the National Commission, the NIH Recombinant DNA Advisory Committee with its Subcommittee on Human Gene Therapy, and the Ethics Advisory Board. All three of these bodies provided advice to their sponsoring agencies regarding research ethics.
From page 187...
... The National Commission and President's Commission demonstrated the effectiveness of federally appointed bodies in dealing with ethical issues. The committee recommends that the federal government establish a public deliberative body (or bodies, depending on the breadth of the mandate to be addressed)
From page 188...
... A second group of committee members believed that a national commission with a broad mandate was preferable, so long as it had sufficient time and funding to hire staff and commission background papers to encompass all of the appropriate expertise needed. In this case, commission members who could be generalists would evaluate background papers and staff research in order to reach conclusions.
From page 189...
... The composition of the body should enhance the qualities of ~mpartialigr. All of the national-level public ethics bodies convened in the past have been composed of experts in a range of relevant disciplines, including academic bioethics, the health professions, biomedical science, social and behavioral sciences, law, philosophy, and religion.
From page 190...
... Adv~s~ny Role. A national commission should provide advice not only to its authorizing body but to all concerned parties, including Me biomedical commumt~r; federal, state, and local governmental bodies; and We public.
From page 191...
... Having action-forcing powers means that deliberations will be approached more thoughtfully by all, including members of the commission itself. National commissions of the past have worked more effectively in reaching their recommendations when they knew that the recommendations would be responded to by others and would potentially have a direct regulatory impact.
From page 192...
... There are important reasons to limit a national commission's term, one of which is that limited terms enhance members' ability to maintain energy, focus, and timeliness. The committee considered two possibilities: (1 )
From page 193...
... :A1. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.
From page 194...
... In: Human Fetal Tissue Transplantation Research Advisory Committee to the Director. Bethesda, Maryland.


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