Justice, Fairness, and Membership in a Class: Conceptual Confusions and Moral Puzzles in the Regulation of Human Subjects Research

Author:

Iltis Ana S.

Abstract

Much of the human research conducted in the United States or by U.S. researchers is regulated by the Common Rule. The Common Rule reflects the decision of 17 federal agencies, including the Department of Health and Human Services (whose regulations appear at 45CFR46), to require that investigators follow the same rules for conducting human research. (The Food and Drug Administration [FDA] has its own rules (at 21CFR50 and 21CFR56), though there is significant overlap with the Common Rule.) Many of the obligations delineated in the Common Rule can be traced back to the work of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (hereafter the National Commission). The National Commission was appointed in 1974 as part of the National Research Act (P.L. 93-348) in response to revelations about serious abuses involving human subjects, most notably the Tuskegee/United States Public Health Service Syphilis Study.

Publisher

Cambridge University Press (CUP)

Subject

Health Policy,General Medicine,Issues, ethics and legal aspects

Reference37 articles.

1. 18. Id., at 241.

2. 24. Yesley, M. , “Oral History of the Belmont Report and the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research: Interview with Michael Yesley, April 19, 2004,” Office of Human Research Protections, at 6–7, available at (last visited June 28, 2011).

3. 16. Id., at 238.

4. 29. Id. According to the National Commission, “Minimal risk is the probability and magnitude of physical or psychological harm that is normally encountered in the daily lives, or in the routine medical or psychological examination, of healthy children” (see supra note 4 [1977], at xx). This definition was not incorporated into the Common Rule, Subpart D, which regulates pediatric research. According to the Common Rule, “Minimal risk means that the probability and magnitude of harm or discomfort anticipated in the research are not greater in and of themselves than those ordinarily encountered in daily life or during the performance of routine physical or psychological examinations or tests” (45 C.F.R. 46.102.i). For research involving prisoners, the Common Rule stipulates that “Minimal risk is the probability and magnitude of physical or psychological harm that is normally encountered in the daily lives, or in the routine medical, dental, or psychological examination of healthy persons” (45 C.F.R. 46.303.d). The indexing to healthy persons in the definition of minimal risk in research regarding prisoners but not children has been the subject of extensive discussion.

5. 25. Toulmin, S. , “Oral History of the Belmont Report and the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research: Interview with Stephen Toulmin,” May 14, 2004, Office of Human Research Protections, at 9, available at (last visited June 28, 2011).

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