Alive and Well: The Research Imperative

Author:

Dresser Rebecca

Abstract

The government-sponsored Tuskegee syphilis study had a huge impact on U.S. research ethics and policy. Study investigators regarded subjects as “mere means” to their research ends, which led to a variety of ethical violations. Investigators used deception so that subjects would see participation as therapeutic — researchers promoted the therapeutic misconception because this advanced study objectives. The research would produce important information, and this justified lying to research subjects.Today we see this sort of intentional deception as unjustified no matter how important a study might be. But what do we make of the claim that the syphilis study had value? As James Jones reported, its objectives were to test the prevailing views that syphilis affected blacks and whites differently, and that the disease was less harmful to blacks than whites. U.S. Public Health Service researchers and officials assumed the study had sufficient value to justify not only deceiving subjects, but also depriving them of safe and effective treatment.

Publisher

Cambridge University Press (CUP)

Subject

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

Reference32 articles.

1. Taming the Beloved Beast

2. 32. See Kimmelman, , Gene Transfer, at 90. Kimmelman calls research value the “dark matter of research ethics,” commenting that social value is almost always cited as a justification for research, but “a search of the scholarly literature turns up only a handful of conceptual papers amid thousands on consent, risk, inducement, and privacy.” Id.

3. Viewing Research Participation as a Moral Obligation: In Whose Interests?

4. Unseen World of Clinical Trials Emerges From U.S. Database

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