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4. The Spectrum of Societal Responses
Pages 87-149

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From page 87...
... Many products of these commissions have stood the test of time and continue to have a prominent role in education for health professionals and ethicists. Hospital ethics committees, for example, are often able to soften advocacy of patient interest in order to gain the willing participation of health care providers (Hoffman, 1991~.
From page 88...
... , professional and institutional (e.g., institutional review boards) , or grassroots (e.g., individual and community initiatives)
From page 89...
... In 1968, the Government Research Subcommittee of the Senate Committee on Government Operations held hearings on a joint resolution sponsored by Senator Walter Mondale to establish a National Advisory Commission on Health Science and Society (National Commission on Health Science and Society, 1968~. After the Ad Hoc Task Force on Cardiac Replacement of the National Heart Institute acknowledged that this new technology had ethical and social implications that
From page 90...
... 93-348) to create the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission)
From page 91...
... During its four years, the National Commission issued ten reports: five dealt with special groups of subjects (fetuses, prisoners, children, patients undergoing psychosurgery, and the institutionalized mentally infirm) ; two dealt with research review (reports on IRBs and on disclosure of information under the Freedom of Information Act)
From page 92...
... Instead, in 1978 the Congress authorized the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (President's Commission) , thereby combining Senator Kennedy's interest in elevating the National Commission above the departmental level with the desire of Representative Paul Rogers and his colleagues on the House Health Subcommittee that the successor body take on topics beyond research with human subjects (P.L.
From page 93...
... , grew out of the studies on determining death, informed consent, and access to care. Four reports dealt with biomedical and behavioral research, including the subject of human genetic engineering (at the request of the president's science advisor)
From page 94...
... It issued no reports, its staff departed by the end of FY 1989, and its mandate expired on September 30, 1990. Ethics Bodies in the Executive Branch Ethics Advisory Board, DHEW Among the recommendations of the National Commission was the establishment of a group within DHEW to provide ethical advice regarding proposals that involved particularly sensitive types of research.
From page 95...
... In response to the 1982 report of the President's Commission, Splicing Life, the RAC decided to address ethical issues more intensely by appointing a task force on human gene therapy, subsequently modified into a standing Subcommit
From page 96...
... Although traditionally chaired by one of its scientific members, the current chair is an ethicist with long involvement in genetic engineering issues. As a federal advisory committee, its meetings are announced in the Federal Register and are open to the public; when important new scientif~c projects are before the committee for review, media attention is often intense and the group's recommendations are given extensive coverage.
From page 97...
... Such an effect would be of great benefit to the genome project, and the success of this earmarked ELSI funding program could serve as a very useful model for other areas of science. Human Fetal Tissue Transplantation Research Panel, DHHS The NIH Human Fetal Tissue Transplantation Research Panel was convened in 1988 at the request of Assistant Secretary for Health Robert Windom.
From page 98...
... When the panel met for the first time in September 1988, it was asked to respond to ten questions pertaining to the ethical implications of fetal tissue transplantation research. Concerns about the source of the tissue to be used in such research—elective abortions figured heavily in these questions.
From page 99...
... Because of the strongly held views of several religious communities in the state on some of these issues, the New York State Task Force on Life and the Law has had (in addition to the usual mixture of researchers, physicians, lawyers, and philosophers) a larger representation of religious leaders than the equivalent federal advisory commissions (see Appendix A and the background paper by Brody for further descriptions of the New York State Task Force)
From page 100...
... Since the broadest and bestdocumented experience involved the National Commission and the President's Commission, our analysis begins with them and then widens to encompass other federal and state panels. Comparing the Commissions The two national commissions had several features in common: both were made up of 11 people from a variety of fields (about half from medicine or research)
From page 101...
... . There were also some marked differences between the two commissions: the mandate of the President's Commission was considerably broader, and it operated independently of any department or agency; no new members were added to the National Commission during its four-year life, whereas only three of the original members served throughout the life of the President's Commission; and the stab of the President's Commission which began with much greater expertise in bioethics than the National Commission staff—was divided into working groups for the various reports, meaning that many worked only on specified topics with no involvement in other reports that concerned unrelated topics.
From page 102...
... The report thus ended up being an academic discourse on the role and function of commissions, rather than affecting the public issue of access to health care. The National Commission spoke primarily to federal officials responsible for human subjects regulations and to the biomedical research community (including members of IRBs)
From page 103...
... Moreover, the danger of too much entanglement with the political process (particularly when appointments are made by the legislative branch or involve legislators) is clearly evident in the experience of the Biomedical Ethics Advisory Committee and the New {ersey Bioethics Commission.
From page 104...
... (See background paper by Gostin for further description of the ways in which courts, regulation, and legislation can impact such decisions)
From page 105...
... The President's Commission report on foregoing treatment was instrumental in leading most courts to reject the distinction between withholding and withdrawing treatment, between ordinary and extraordinary treatments, and between terminal and nonterminal cases. In other cases, courts have acted independently to set out procedures and criteria for decision making, ranging from second opinions to the use of ethics committees or ombudsmen.
From page 106...
... If no statute provides a definite answer, courts must decide which precedents seem most helpful, whether the scientific aspects are supported by sound data, whether the common law provides guidance, and so on. Many court decisions in these areas read like laws—some even set up specific administrative procedures to handle future cases—and they provide a blueprint for subsequent legislation.
From page 107...
... Similarly, the U.S. government took the lead in investigating bioethical issues and in issuing regulations when it established the National Commission and President's Commission in the 1970s.
From page 108...
... In 1985, it constituted a steering committee on bioethics representing a variety of professional backgrounds and geographical areas, which in turn organized "international dialogues" on ethical issues arising in such subjects as battered children, human genome research, and family planning. Over the years, CIOMS groups have offered international ethical guidelines on a number of topics, ranging from protection of human subjects of medicalexperimentation (1982 andl993)
From page 109...
... The LAB, headquartered in Australia, provides a forum for diverse views on bioethical issues but does not itself take positions on any of them. None of the other organizations has yet attempted to form an international bioethics commission.
From page 110...
... A Human Subjects Research Ethics Committee advises Canada's National Research Council on issues arising in experimentation on human subjects. Canada's Royal Commission on New Reproductive Technologies is a notably well-funded initiative that has only partially escaped the kind of political heat generated by abortion politics that doomed the Biomedical Ethics Advisory Committee in our Congress.
From page 111...
... CSEC is at the apex of a system of human subjects review boards that covers the whole of Denmark; it acts on disputed proposals and in cases in which a matter of principle must be decided. In 1988, Parliament created a second council, the Danish Council of Ethics, with a mandate to consider a broader range of bioethical issues.
From page 112...
... A Comite Consultatif National d'Ethique Pour les Sciences de la Vie et de la Sante (National Consultative Ethics Committee on Life and Medical Sciences)
From page 113...
... With an interest in a national commission rising in the face of governmental refusal to go along, a private solution has been attempted. The Nuffield Foundation, an educational and charitable trust, was asked to consider the organization of a private body that would function like the governmental bioethics bodies in other European states.
From page 114...
... No survey data exist regarding public perceptions of the commissions as independent or as "captured." Unsystematic opinion sampling suggests that, where separate boards or committees exist to oversee human subjects research, these tend to be perceived as protective of the interests of physicians and scientists, lay membership or majorities notwithstanding. Evaluation and Soundness.
From page 115...
... To this extent, they act as national spokesperson, even though few commissioners are elected to their posts. In the United States, commissions have not been regarded as bioethics policymakers except and until their recommendations have been adopted as law (e.g., the human subjects regulations of the National Commission, or the statutory definition of death of the President's Commission)
From page 116...
... have responded individually and cooperatively to the changes introduced into the medical, legal, and ethical communities by biomedical technology. Medical associations in particular have long been involved in the formulation of clinical practice guidelines and ethical policies in an attempt to assist clinicians in the rendering of proper and appropriate care to their patients.
From page 117...
... It has a long history of such guidance, beginning in 1847 with the establishment of a code of ethics. The nine-member Council on Ethical and {udicial Affairs addresses the moral and legal concerns that attend clinical practice, primarily through the issuance of regular reports containing opinions, guidelines, and relevant case law regarding a vast array of ethical and legal issues presented by the rapid advancement of biomedical technology.
From page 118...
... regulations, for example, require that all funding of in vitro fertilization research involving humans be reviewed by an officially constituted board that with the disbanding of the EAB in 1980 no longer exists. Since 1980, the country has been without an officially constituted group to provide analysis and advice on ethically and socially controversial biomedical research protocols, and clinicians and investigators have been without much-needed guidance.
From page 119...
... The American Academy of Pediatrics (AAP) has developed influential guidelines for establishing hospital ethics committees and authored many papers on bioethical subjects such as informed consent, forced maternal treatment, research involving children, Baby Doe issues, religious exemption from child abuse laws, and organ procurement from anencephalic infants.
From page 120...
... The AAB board is composed of representatives from the AMA, ACE, AHA, American Bar Association, and other professional organizations, as well as several bioethicists. Health Maintenance Organizations In addition to the efforts of medical associations, individual HMOs, motivated primarily by desires to reduce costs and simultaneously preserve a reasonable standard of care, have made several efforts to guide physicians and patients in their use of biomedical technology.
From page 121...
... Seriously Ill Newborns. Between the mid-1960s and the early 1980s, an array of devices and interventions greatly improved our ability to sustain the lives of very small or seriously ill newborns.
From page 122...
... 93-348) , which mandated the establishment of institutional review boards in all research organizations receiving federal funds to support research using human subjects, also directed the National Commission to identify ethical principles relevant to human subjects research, develop guidelines for the conduct of such research, and examine IRB mechanisms for review of applications for human subjects research, particularly in the case of research involving vulnerable subjects.
From page 123...
... IRBs are an example of an innovative public mechanism for addressing social and ethical issues related to research involving human subjects. IRBs have been able to function with some efficiency because they have the
From page 124...
... (1994) describe the many differences that arose in the proposed informed consent procedures in 50 applications for a health services research project sponsored by the Robert Wood Johnson Foundation.
From page 125...
... he review process. Hospital Ethics Committees and Physicians Historical Development of Hospital Ethics Committees In the last two decades many hospitals have instituted ethics committees charged with providing the institution and its staff with ethical guidance in policy and practice.
From page 126...
... Not all HECs engage in all three activities, and some have additional responsibilities. {CAHO standards call only for committees to provide education on ethical issues and to provide a forum for the discussion of those issues.
From page 127...
... As some HECs enter their second decade, many others are just getting started. A tremendous amount remains unknown about the future of ethics committees.
From page 128...
... , as well as commissioned papers such as The Rights of Physicians: A Philosophical Essay (1978c) and Ethical Issues in Governmental Efforts to Promote Health (1978b)
From page 129...
... Conference participants were unanimous in their belief that a new bioethics body was needed, but not in their opinions about whether IOM should have a role. In their debate about the role of IOM in national bioethics deliberation, they noted several advantages and disadvantages of IOM as a professional/institutional mechanism for deliberation of ethical issues.
From page 130...
... The following year, OTA published a report on human gene therapy that specifically addressed the ethical acceptability of different kinds of gene therapy and their implications for society (OTA, 1984a)
From page 131...
... Thus, while OTA has never had an explicit mandate to address bioethical issues, its efforts to assess the impacts of emerging technologies on society have forced it to confront complex ethical dilemmas on several occasions. Like IOM, OTA has inherent strengths and weaknesses as a deliberator of ethical issues in medicine and health policy.
From page 132...
... The Hastings Center strives to achieve these goals through sponsorship of conferences on topics in biomedical ethics and support of educational opportunities such as student internships, a visiting scholars program, and international fellowships. The center publishes the Hastings Center Report, a bimonthly publication that features articles, commentary, literature reviews, and announcements of conferences and educational and employment opportunities throughout the country and abroad.
From page 133...
... Bioethical issues such as in vitro fertilization, abortion, health resource allocation, use of life-sustaining technologies, organ transplantation, euthanasia, and gene therapy have been the focus of research. In addition to activities in this country, the Kennedy Institute conducts an "Asian Bioethics Program" that, together with the Waseda University's Center for Human Sciences in Tokyo, has been organizing a series of U.S.iapan Bioethics Conferences since 1985.
From page 134...
... As noted in Chapter 2, some twentieth century theologians and philosophers of religion were pioneers in reflecting on the import of religion for biomedical developments and in giving an entirely new character to the area in medicine called medical ethics. Theologians and clergy have continued to be important contributors to bioethics.
From page 135...
... Some rapprochement may have developed in the summer of 1993 as the World Parliament of Religions sought common understanding on moral questions at its Chicago gathering. On June 20, 1980, the General Secretaries of the National Council of Churches, the Synagogue Council of America, and the United States Catholic Conference addressed a letter to President Carter expressing concern over the ethical implications of genetic engineering.
From page 136...
... We have already seen the critical role that professional associations have played, primarily by providing ethical and practical guidance to physicians in the use of these technologies. Yet voluntary efforts are not confined to organizations with preexisting structures and stable numbers of professionally educated members.
From page 137...
... Some of these groups have had a significant impact on the research into and use of biomedical technologies, as well as public discussion of these issues. The impact of grassroots organizations has been particularly notable in the field of AIDS research and treatment, as well as in the areas of contraceptive technology and fetal tissue transplantation research.
From page 138...
... NARAL publishes newsletters, rallies its supporters to public protests, lobbies representatives, and sponsors forums in which scientific, legal, and ethical scholars and legislators sympathetic to this cause present compelling arguments for policies that guarantee women's reproductive autonomy, including the continued availability of abortion and research into contraceptive technologies that make abortion less necessary. In 1991, NARAL sponsored a symposium on the federal ban on fetal tissue transplantation research at which participants decried both the policy itself and the tenuous linkage that DHHS had made between such research and a hypothetical increase in abortions (NARAL, 1991~.
From page 139...
... A growing body of research shows that cultural factors are critical to understanding and modifying health-related behavior, including preventive action (Cruickshank and Beevers, 1989; Graham, 1984; Mascie-Taylor, 1993; Strauss, 1991; Helman, 1990; Biersecker et al., 1987; Armstrong, 1989~. Assessing Genetic Risks Cultural issues are particularly salient in understanding responses to new genetic knowledge and screening possibilities, in part because genetic disorders, to a greater extent than other health problems, coincide with "risk populations" that are ethnically and racially demarcated.
From page 140...
... Genetic disorders are experienced not only by individuals and their families, but also simultaneously by risk populations that are culturally distinct, and these populations will have highly variable responses to "their disease." The variability will be linked to their social attributes, including the meaning of a genetic disorder in their respective cultural, racial, or ethnic groups. In the past, many community health interventions have not worked because they have not been articulated with the cultural meanings and constructions which are at the center of people's everyday life priorities (Syme and Alcalay,1982~.
From page 141...
... This situation has led to several attempts around the nation to "rationalize" the allocation of health care. The most famous case has been the work of the Oregon Health Services Commission, which expanded the notion of community responses to include well-organized, focused, volunteer-led group discussion of vital health care issues.
From page 142...
... The information provided by these discussions and the results of a parliamentary debate and vote taken by citizens chosen from these statewide discussion groups was part of the information used by the 11-member Oregon Health Services Commission to guide the ranking of health care services (Klevit et al., 1991~. In early May of 1990, the commission published a list of health care services, with each assigned a different level of priority; coverage would be restricted to those conditions assigned a high priority (Hadorn, 1991~.
From page 143...
... Medicaid recipients, too, were seriously underrepresented (Daniels, 1991~. Thus, those least likely to attend these meetings the poor, underemployed, elderly, minorities, and Medicaid recipients were those most likely to be seriously affected by any rationing plan developed as part of health care reform.
From page 144...
... Hastings Center Report 17:2~24. Armstrong, D
From page 145...
... 1991. Deliberations of the Human Fetal Tissue Transplantation Research Panel.
From page 146...
... 1977. Hospital ethics committees: A guarded prognosis.
From page 147...
... (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research)
From page 148...
... 1984a. Human Gene Therapy: A Background Paper.
From page 149...
... National Institutes of Health Human Fetal Tissue Transplantation Research Panel.


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