The Ethics of Research on Vulnerable Populations - Annotated Bibliography

Description

Annotated bibliogrpahy for the research ethics module covering the ethical issues that arise in doing research on vulnerable populations.

Body

Author(s): Atwood D. Gaines, Ph.D., MPH

Duster, Troy.
Backdoor to Eugenics. (New York: Routledge Press, 1990). Shows the return of scientific racism under the influence of genetic research and (mis)interpretations of findings.
Eisenberg, Leon
"The Social Imperatives of Medical Research." Science (1977) 198:1105-1110. Shows some of the key limitations and biases in US medical research.
Fausto-Sterling, Anne.
Myths of Gender: Biological Theories About Women and Men, second edition. (New York: Basic Books, 1992).
Gaines, Atwood D.
"Race and Racism." Encyclopedia of Bioethics. ed., Warren T. Reich. (New York: Free Press, 1978).
Gaines, Atwood D.
1992 From DSM I to III-R; Voices of Self, Mastery and the Other: A Cultural Constructivist Reading of U.S. Psychiatric Classification. Social Science and Medicine. 35(1):3-24. An important article which shows the gender, ethnic and age biases underlying classification of mental disorders in US psychiatry.
Gilman, Sander L.
Difference and Pathology: Stereotypes of Sexuality, Race and Madness. (Ithaca: Cornell University Press, 1985.) History of ideas of social and cultural difference and the consequences of their paring with notions of pathology.
Gilman, Sander L.
Disease and Representation: Images of Illness from Madness to Aids. (Ithaca: Cornell University Press, 1988).
Gilman, Sander
Seeing the Insane. (New York: John Wiley, 1982.) The construction of the mentally ill as biologically distinct population(s).
Gould, Stephen Jay
The Mismeasure of Man. (New York: W.W. Norton, 1981.) A nearly classic study of science's intentional an unintentional misconstructions of humanity aimed and "demonstrating" "alleged "racial "differences and their hierarchical ordering.
Harding, Sandra, Editor
The "Racial" Economy of Science: Toward a Democratic Future. (Bloomington, Indiana: University of Indiana Press, 1993.) Essays focus on the "racial" economy, as a system of knowledge production and distribution, of Western science and the negative consequences of it for western and non-western 'others.'
Harris, Sheldon
Factories of Death: Japanese Biological Warfare, 1932-1945, and the American Cover-Up. (New York: Routledge, 1994.) Study of the Japanese Biological Warfare (BW) Unit in Manchuria where subjects were routinely tortured and murdered in the name of science.
Jones, James.
Bad Blood: The Tuskegee Syphilis Experiment. (New York: Free Press, 1993). The central work on the Tuskegee Syphilis study.
Kater, Michael
Doctors Under Hitler. (Chapel Hill, NC: University of North Carolina Press, 1989.) Study of the profession of medicine and its relationship to the holocaust and deprofessionialization of Jewish physicians.
Larson, Edward J.
Sex, Race, and Science: Eugenics in the Deep South. (Baltimore: Johns Hopkins Press, 1995). Shows the relationship of communalist notions of sex and race in scientific and the popular mind of the South.
Lederer, Susan E.
Subjected to Science: Human Experimentation in America Before the Second World War. (Baltimore: The Johns Hopkins Press, 1995).
Osborne, Newton G. and Feit, Marvin D.
"The Use of Race in Medical Research." Journal of the American Medical Association. 267(2), 1992: 275-279. Important article demonstrating the moral(istic) and communalist biases in research that typically uses "race" as a variable in US medical research.
Pernick, Martin
A Calculus of Suffering. (New York: Columbia University Press, 1985.) Concerns the differential biology perceived to exist and to justify exclusion of certain social classes and "races" from the application during surgery of the newly discovered anesthetics.
Proctor, Robert
Racial Hygiene: Medicine Under the Nazis. (Cambridge: Harvard University Press, 1989.) Classic study of the role of German medicine in the Holocaust and its dehumanization of mental patients and members of specific ethnic groups.
Russett, Cynthia Eagle
Sexual Science: the Victorian Construction of Womanhood. (Cambridge: Harvard University Press, 1989.) Medical and popular views of women and women's biology used to constrain and control them in the 19th century.
Spicker, Stuart F., Alai, Alon, de Vries, Andre, and Englehardt, H. T. Jr.
The Use of Human Beings in Research: With Special Reference to Clinical Trials. (Dordrecht: Kluwer Academic, 1988).

From Research Ethics Module Supporting Pages

Notes

Caroline Whitbeck introduced methods and modules for discussing numerous issues in responsible conduct of research at a Sigma Xi Forum in 2000. Partial funding for the development of this material came from an NIH grant. You can find the entire sequence on the OEC at http://www.onlineethics.org/Resources/TeachingTools/Modules/19237.aspx. Some information in these historical modules may be out-of-date; for instance, there may be a new edition of the professional society’s code that is referred to in an item. If you have suggestions for updates, please contact the OEC.

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