The Ethics of Research on Vulnerable Populations
Author(s): Atwood D. Gaines, Ph. D.
Background and Module Content
In contemporary complex societies, a variety of distinct social and cultural identities coexist as part of a single social structural arrangement or as part of several such configurations that are interlinked. In plural societies, those with two or more coexisting, distinct groups as in the U.S., various groups may be accorded differential social status. Such differences in status can be reflected in differential and unequal access to health and economic resources and social and political power. Inequality in the U.S. is expressed in various forms of communalism such as racism, sexism, ageism, and classism. These forms of communalism appear in both the wider society and in medical/scientific theory and research.
Since Nuremberg especially, but earlier with the `antivivisectionists', there has been a widening concern for the critical evaluation of research with human subjects. There are many examples of harmful exploitation of low status populations (ethnic group members, children, the poor, women) or subject populations (soldiers, prisoners) in medical research. The most widely known example is the Tuskegee Syphilis study, but others include nerve and mustard gas experiments during World War II and infectious disease studies on U.S. military personnel, radiation experiments on the same population, and the more recent reports of radiation experiments conducted by the U.S. government on prisoners, dying patients, pregnant women, and mentally retarded children. Some people argue that there are also examples of harmful neglect of important populations, such as the lack of inclusion of women and children in much of past medical research. Also vulnerable are ill persons, such as the mentally ill, the demented, and children. Vulnerability may also be amplified by a coincidence of negatively valued statuses in an individual, e.g., a demented elder, a fatally ill disadvantaged ethnic or gender group member.
This module addresses the past and present use of humans in medical research from the perspective of the differential power and prestige of particular social segments. The primary concern here is the equitable selection of subjects and their fair treatment, including protection from risks.
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Method and Scenarios
Distribution of scenarios to the students and faculty.
Panel discussion based on those scenarios and general questions and any others that students or faculty wish to add.
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Readings (Recommended for discussion of scenarios)
- Explanation of Federal Regulations (45CFR46) on research with human subjects, Part I and Part II.
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- Understanding of key conceptual and ethical problems that arise in research with vulnerable populations and how ethical principles are exercised in such matters.
- Increase ability to identify and discuss these ethical issues and to prevent misinterpretations and misunderstandings.
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Bibliography (for further reading)
Age, Gender, Ethnic and Racial Groups as Vulnerable Groups in Medicine and Science: A Brief Bibliography
Groups that are vulnerable are not naturally so; they are made vulnerable by biases in scientific and culture that define groups as having differential value. The following works are suggestive of some of the beliefs that create differences among groups that translate into inequality and vulnerability in research.
- Adas, Michael. Machines as the Measure of Men: Science, Technology, and Ideologies of Western Dominance. (Ithaca, NY: Cornell University Press, 1989.)
- Technological superiority as index of "racial" or cultural superiority justifying domination and or extermination of others.
- Barkan, Elazar. The Retreat of Scientific Racism: Changing Concepts of Race in Britain and the United States Between the World Wars. (Cambridge: Cambridge University Press, 1992.)
- The rise and decline of racial ideology in Britain and the US before World War II.
- Binstock, Robert H. and Stephen G. Post, Editors. Too Old for Health Care?: Controversies in Medicine, Law, Economics, and Ethics. (Baltimore: the Johns Hopkins University Press, 1991).
- Collection of essays on social worth and distributive justice with the elderly in the US.
- Brandt, Allan. "Racism and Research: the Case of the Tuskegee Syphilis Study." Hastings Center Report December, 1978: 21-29.
- Considers the racist ideas of physicians and the US health service that supported the infamous Tuskegee Study.
- Brieger, Gert H. "Human Experimentation: History." In Encyclopedia of Bioethics. ed., Warren T. Reich. (New York: Free Press, 1978).
- Dresser, Rebecca. "Wanted: Single, White Male for Medical Research." Hastings Center Report. (January-February, 1992): 24-29.
- Shows exclusion of women from scientific research and its consequences for findings.
For further reading please see the additional Annotated Bibliography
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Relevant Web Resources
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- Ethical and Policy Issues in International Research.
- A Draft Report of the National Bioethics Advisory Commission.
- Trial and Error: Should Pregnant Women Be Research Subjects? by Annette Kornblum.
- Environmental Health Perspectives Volume 102, Number 9 September 1994.
- International Ethical Guidelines, Codes, and Declarations
- On the National Institutes of Health website.
Cite this page:
"The Ethics of Research on Vulnerable Populations"
Online Ethics Center for Engineering
National Academy of Engineering
Accessed: Sunday, May 19, 2013