Hostname: page-component-cd9895bd7-gxg78 Total loading time: 0 Render date: 2024-12-25T16:32:48.214Z Has data issue: false hasContentIssue false
  • English
  • Français

Finding a Forum for Bioethics in U.S. Public Policy

Published online by Cambridge University Press:  17 May 2016

Kathi E. Hanna ,
Robert M. Cook-Deegan  and
Robyn Y. Nishimi
Kathi E. Hanna
Affiliation:
Howard Hughes Medical Institute, USA
Robert M. Cook-Deegan
Affiliation:
Institute of Medicine, USA
Robyn Y. Nishimi
Affiliation:
Office of Technology Assessment, USA
Get access

Abstract

Advances in biomedical research and health care simultaneously create practical benefits and ethical dilemmas. These bioethical dilemmas are the subject of intense social and political debate. Recent attempts in the United States to address these issues in a national, public policy setting have had mixed success. The absence of a single national voice has resulted in many voices at many levels. This article describes and analyzes past national bioethics bodies in an effort to find commonalities for both success and failure. It concludes that reconstitution of an Ethics Advisory Board within the Department of Health and Human Services and the formation of a President's Bioethics Commission are needed as the nation confronts new and difficult choices in research ethics and the delivery of health care.

Type
ARTICLES
Information
Politics and the Life Sciences , Volume 12 , Issue 2 , August 1993 , pp. 205 - 219
Copyright
Copyright © Association for Politics and the Life Sciences 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abram, M.B. and Wolf, S.M. (1984). “Public Involvement in Medical Ethics.” New England Journal of Medicine 310(10):627–632.CrossRefGoogle Scholar
Advisory Committee to the Director (1988). Human Fetal Tissue Transplantation Research. Bethesda, MD: National Institutes of Health.Google Scholar
Arras, J.D. (1984). “Retreat from the Right to Health Care: The President's Commission and Access to Health Care.” Cardozo Law Review 6(2):321–346.Google Scholar
Bayer, R. (1984). “Ethics, Politics, and Access to Health Care: A Critical Analysis of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.” Cardozo Law Review 6(2):303–320.Google Scholar
Bulger, R.E. (1992). “The Institute of Medicine.” Kennedy Institute of Ethics Journal 2(1):73–77.CrossRefGoogle Scholar
Childress, J. (1991). “Deliberations of the Human Fetal Tissue Transplantation Research Panel.” In Hanna, K.E. (ed.), Biomedical Politics. Washington, DC: National Academy Press.Google Scholar
Cook-Deegan, R.M. (1993, forthcoming). Gene Quest: Science, Politics, and the Human Genome Project. New York: W.W. Norton.Google Scholar
Congregation of the Doctrine of the Faith (1987). Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation. Vatican City.Google Scholar
Consultants to the Advisory Committee to the Director (1988). Report of the Human Fetal Tissue Transplantation Research Panel. Bethesda, MD: National Institutes of Health.Google Scholar
Daniels, N. (1985). Just Health Care. New York: Cambridge University Press.CrossRefGoogle ScholarPubMed
Daniels, N. (1988). Am I My Parents Keeper? An Essay on Justice Between the Young and the Old. New York: Oxford University Press.Google Scholar
Ethics Advisory Board, U.S. Department of Health, Education, and Welfare (1979). Report and Conclusions: Support of Research Involving Human In Vitro Fertilization and Embryo Transfer. Washington, DC: U.S. Government Printing Office.Google Scholar
Fletcher, J.C. (1990). “Evolution of the Ethical Debate about Human Gene Therapy.” Human Gene Therapy 1(1):55–68.CrossRefGoogle Scholar
Hanna, K.E. (1991). Biomedical Politics. Washington, DC: National Academy Press.Google Scholar
Institute of Medicine (1983). Ethical Problems in Medicine and Biomedical and Behavioral Research: Draft Minutes. Washington, DC: Institute of Medicine, National Academy of Sciences. June 17 (meeting June 2).Google Scholar
Institute of Medicine (1989a). Medically Assisted Conception: An Agenda for Research. Washington, DC: National Academy Press.Google Scholar
Institute of Medicine (1989b). The Responsible Conduct of Research in the Health Sciences. Washington, DC: National Academy Press.Google Scholar
Jonsen, A.R. (1978). The Rights of Physicians: A Philosophical Essay. Washington, DC: National Academy Press.Google Scholar
McCarthy, C. (1992). Personal communication at U.S. Congress, Office of Technology Assessment workshop on “Biomedical Ethics in U.S. Public Policy.” December 4, Washington, DC.Google Scholar
Murray, T.H. (1990). “Human Gene Therapy, the Public, and Public Policy.” Human Gene Therapy 1(1):49–54.CrossRefGoogle Scholar
National Academy of Sciences (1975). Genetic Screening: Procedural Guidance and Recommendations. Washington, DC: National Academy Press.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1975). Research on the Fetus. Washington, DC: U.S. Government Printing Office.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1976). Research Involving Prisoners. Washington, DC: U.S. Government Printing Office.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1977a). Disclosure of Research Information Under the Freedom of Information Act. Washington, DC: U.S. Government Printing Office.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1977b). Psychosurgery. Washington, DC: U.S. Government Printing Office.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1977c). Research Involving Children. Washington, DC: U.S. Government Printing Office.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1978a). The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: U.S. Government Printing Office. Reprinted in the Federal Register, April 19, 1979.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1978b). Ethical Guidelines for the Delivery of Health Services by DHEW. Washington, DC: U.S. Government Printing Office.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1978c). Institutional Review Boards. Washington, DC: U.S. Government Printing Office.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1978d). Research Involving Those Institutionalized as Mentally Infirm. Washington, DC: U.S. Government Printing Office.Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, U.S. Department of Health, Education and Welfare (1978e). Special Study: Implications of Advances in Biomedical and Behavioral Research. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1983). The Role of Genetic Testing in the Prevention of Occupational Disease. OTA-BA-194. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1984a). Human Gene Therapy—A Background Paper. OTA-BP-BA-32. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1984b). Impacts of Neuroscience. OTA-BP-BA-24. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1985). Reproductive Health Hazards in the Workplace. OTA-BA-266. Washington, DC: U.S. Government Printing Office, also reprinted by J. B. Lippincott, Philadelphia, PA.Google Scholar
Office of Technology Assessment, U.S. Congress (1986). Alternatives to Animal Use in Research, Testing, and Education. OTA-BA-273. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1987a). Life-Sustaining Technologies and the Elderly. OTA-BA-306. Washington, DC: U.S. Government Printing Office, also reprinted by J. B. Lippincott, Philadelphia, PA.Google Scholar
Office of Technology Assessment, U.S. Congress (1987b). Losing a Million Minds: Confronting the Tragedy of Alzheimer's Disease and Other Dementias. OTA-BA-323. Washington, DC: U.S. Government Printing Office, also available through J. B. Lippincott, Philadelphia, PA and Human Sciences Press, New York, NY.Google Scholar
Office of Technology Assessment, U.S. Congress (1987c). New Developments in Biotechnology, 1: Ownership of Human Tissues and Cells—Special Report. OTA-BA-337. Washington, DC: U.S. Government Printing Office, also reprinted by J. B. Lippincott, Philadelphia, PA.Google Scholar
Office of Technology Assessment, U.S. Congress (1987d). New Developments in Biotechnology, 2: Public Perceptions of Biotechnology—Background Paper. OTA-BP-BA-350. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1988a). Infertility: Medical and Social Choices. OTA-BA-358. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1988b). Mapping Our Genes—Genome Projects: How Big? How Fast? OTA-BA-373. Washington, DC: U.S. Government Printing Office, also reprinted by Johns Hopkins University Press.Google Scholar
Office of Technology Assessment, U.S. Congress (1988c). New Developments in Biotechnology, 4: U.S. Investment in Biotechnology. OTA-BA-360. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1989). New Developments in Biotechnology, 5: Patenting Life. OTA-BA-370. Washington, DC: U.S. Government Printing Office, also reprinted by Marcel Dekker, New York, NY.Google Scholar
Office of Technology Assessment, U.S. Congress (1990). Neural Grafting: Repairing the Brain and Spinal Cord. OTA-BA-462. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1992a). Transcript of a workshop on “Biomedical Ethics in U.S. Public Policy.” December 4, Washington, DC.Google Scholar
Office of Technology Assessment, U.S. Congress (1992b). Cystic Fibrosis and DNA Tests: Implications of Carrier Screening. OTA-BA-532. Washington, DC: U.S. Government Printing Office.Google Scholar
Office of Technology Assessment, U.S. Congress (1993). Biomedical Ethics in U.S. Public Policy. OTA-BP-BBS-105. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1981a). Defining Death. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1981b). Protecting Human Subjects. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1982a). Compensating Research Injury. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1982b). Making Health Care Decisions (with Vols. 2 and 3 appendices). Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1982c). Splicing Life. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1982d). Whistleblowing in Biomedical Research. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983a). Deciding to Forego Life-Sustaining Treatment. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983b). Implementing Human Research Regulations. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983c). Screening and Counseling for Genetic Conditions. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983d). Securing Access to Health Care. Washington, DC: U.S. Government Printing Office.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983e). Summing Up. Washington, DC: U.S. Government Printing Office.Google Scholar
Tancredi, L.R., ed. (1974). Ethics of Health Care. Papers of the Conference on Health Care and Changing Values, November, 1973. Washington, DC: National Academy Press.Google Scholar
Vawter, D.E. (1993). “Fetal Tissue Transplantation Policy in the United States.” Politics and the Life Sciences 12:79–85.CrossRefGoogle Scholar
Watson, J.D. (1990). “The Human Genome Project: Past, Present, and Future.” Science 248:44–49.CrossRefGoogle Scholar
Wikler, D. (1978a). Ethical Issues in Governmental Efforts to Promote Health. Washington, DC: National Academy Press.Google Scholar
Wikler, D. (1978b). “Persuasion and Coercion for Health: Ethical Issues in Government Efforts to Change Life-Styles.” Milbank Memorial Fund Quarterly Health and Society 56(3):303–338.CrossRefGoogle Scholar
Wikler, D., ed. (1986). Medical Decision Making for the Demented and Dying. Milbank Quarterly [special issue]. New York: Cambridge University Press.Google Scholar