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The Tuskegee Syphilis Study forced the nation to rethink and redefine practices involving human experimentation, especially those involving minority populations. As a consequence, HEW established a National Human Investigation Board, and legislation was passed requiring the establishment of Institutional Review Boards (IRBs).
A class action suit filed in the 1970s on behalf of the survivors resulted in no new law and avoided the issue of government responsibility for injury in such an experiment. Each survivor received a settlement of approximately $40,000.
The most enduring legacy of the Tuskegee Syphilis Study is its repercussions in the African American community, which have implications in light of the AIDS epidemic. The study laid the foundations for African Americans’ continued distrust of the medical establishment, especially public health programs and a fear of vaccinations. It reinforced views about the medical establishment and the federal government, as well as disregard for African American lives. Although community outreach efforts have done much to combat the misconceptions, there seems to be evidence that African Americans did not seek treatment for AIDS in the early 1980s because of distrust of health care providers regarding the diagnosis, prognosis, and treatment of AIDS.
James H. Jones, an historian and specialist in bioethical issues, wrote in Bad Blood: The Tuskegee Syphilis Experiment (1993) the following:
“As a symbol of racism and medical malfeasance, the Tuskegee Study may never move the nation to action, but it can change the way Americans view illness. Hidden within the anger and anguish of those who decry the experiment is a plea for government authorities and medical officials to hear the fears of people whose faith has been damaged, to deal with their concerns directly, and to acknowledge the link between public health and community trust. Government Authorities and medical officials must strive to cleanse medicine of social infection by eliminating any type of racial or moral stereotypes of people or their illnesses. They must seek to build a health system that will make adequate health care available to all Americans. Anything less will leave some groups at risk, as it did the subjects of the Tuskegee Study” (p. 241).
References
Caplan, A. L. (1992). Twenty years after: The legacy of the Tuskegee syphilis study—When evil intrudes. Hastings Center Report, 22, 29-32.
Heintzelman, C. A. (1995, March). Ethical issues in social work research: The Tuskegee syphilis study, 41st Annual Program Meeting, Council on Social Work Education, San Diego, California.
Heintzelman, C. A. (1996). Human subjects and informed consent: The legacy of the Tuskegee syphilis study. Scholars, 6 (1), 23-30.
Jones, J. H. (1993). Bad blood: The Tuskegee syphilis experiment. New York: The Free Press.
Monette, D. R., Sullivan, T. J., & DeJong, C. R. (2002). Applied social research: Tool for the human services (5th ed.). New York: Harcourt.
Walker, A. (1992).Possessing the secret of joy. London: Vantage Press.
Recommended Resources
Benedek, T.G. (1978). The Tuskegee study of syphilis: Analysis of moral versus methodologic aspects. Journal of Chronic Diseases, 31 (1), 35-50.
Berkowitz, E. D. (1983). Bad blood: The Tuskegee syphilis study. Journal of Social History, 16, 152-153.
Caldwell, J. G., Price, E. V., Schroeter, A. L., & Fletcher, G. F. (1973). Aortic regurgitation in the Tuskegee study of untreated syphilis. Journal of Chronic Diseases, 26, 187-194.
Code of ethics of the National Association of Social Workers. (1999). Washington, D.C.: NASW Press.
Curran, W. J. (1973). The Tuskegee syphilis study. New England Journal of Medicine, 289, 730-731.
Final report of the Tuskegee syphilis study ad hoc advisory panel. (1973). (“ A panel created to investigate the circumstances surrounding the study of untreated syphilis in the male Negro, initiated by the United States Public Health Service in 1932. U.S. Department of Health, Education, and Welfare, Public Health Service.”).
Fost, N. (1997, January 24). When patients can’t provide informed consent. The Chronicle of Higher Education, A48.
93rd Congress. (1973). Hearings of the U. S. Senate, Subcommittee on Health of the Committee on Labor and Public Welfare, Quality of health care—Human experimentation.
Heintzelman, C. A. (2002). Social work research I: The Tuskegee syphilis study in P. N. Black, E. P. Congress & K. Strom-Gottfried, (Eds.), Teaching Social Work Values and Ethics: A Curriculum Resource. Washington, D.C.: Council on Social Work Education.
Reverby, S.M. (Ed.) (2000). Tuskegee’s truth: Rethinking the Tuskegee syphilis study. Chapel Hill: University of North Carolina Press.
Rivers, E., Schuman, S. H., Simpson, L., & Olansky, S. (1953, April). Twenty years of followup experience in a long range medical study. Public Health Reports.
Web Sources
http://hsc.virginia.edu/hs-library/historical/apology/
http://hsc.virginia.edu/hs-library/historical/apology/report.html
http://www.dc.peachnet.edu/~shale/humanities/composition/assignments/experiment/tuskegee.html
http://www.cdc.gov/nchstp/od/tuskegee
http://www.cdc.gov/nchstp/od/tuskegee/time.htm
http://www.cnn.com/HEALTH/9705/16/nfm.tuskegee/index.html
http://dir.yahoo.com/Health/Diseases_and_Conditions/Syphilis/Tuskegee_Study/
http://ublib.buffalo.edu/libraries/units/hsl/history/tuskegee.html
http://www.infoplease.com/ipa/A0762136.html
http://www.scils.rutgers.edu/~lyonsm/tuskegee.html
The Tuskegee Syphilis Study: Questions for Ethical Consideration
- How do the issues of informed consent, confidentiality, and disclosure of results apply to the Tuskegee Syphilis Study?
- What recommendations could you make to the researchers to safeguard the ethical standards for research in the Tuskegee Syphilis Study? Consider each of the following ethical issues: informed consent; confidentiality; privacy; physical or mental distress; sponsored research; honest disclosure of results; scientific advocacy; protecting vulnerable clients; and withholding treatment for research purposes. Do you think the study could be done ethically at all? Support your conclusion.
- Suppose you are working in an AIDS treatment unit, and a proposal is made to initiate a new treatment program that looks promising but is largely untested. Under what conditions do you think it would be acceptable to utilize a control group as a comparison group that does not receive any treatment? Under what conditions would it be ethically unacceptable? How might you avoid some of the ethical dilemmas that come from withholding treatment but still have some form of control group to use for comparison?
(Adapted from Monette, D.R., Sullivan, T.J., & DeJong, C.R. (2002).Applied social research tool for the human services (5th ed.). New York: Harcourt.)
Carol A. Heintzelman, DSW, ACSW, LSW, is Professor of Social Work at Millersville University of Pennsylvania.
Copyright © 2003 White Hat Communications. All rights reserved. From THE NEW SOCIAL WORKER, Fall 2003, Vol. 10, No. 4. For reprints of this or other articles from THE NEW SOCIAL WORKER (or for permission to reprint), contact Linda Grobman, publisher/editor, at P.O. Box 5390, Harrisburg, PA 17110-0390, or at
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