Exploitation in Medical Research: The Enduring Legacy of the Tuskegee Syphilis Study
Posted: 28 Jun 2017
Date Written: June 27, 2017
For forty years, the United States government allowed economically disadvantaged African American men to suffer from the effects of syphilis, which included sores, fever, hair loss, weight loss, headaches, paralysis, blindness, and dementia, even though treatment became available during the study. Specifically, from 1932 until 1972, researchers enrolled economically disadvantaged African American men in the Tuskegee Syphilis Study to document the course of syphilis, even though the course of the disease was already known. Thus, there was nothing gained from the study other than exploiting economically disadvantaged minorities.
The egregiousness of this study, lead to the creation of three Bioethical Principles: Respect for Persons (informed consent), Beneficence (the best interest of the individual participating in the research based on a benefit risk analysis), and Justice (who participates in medical research and what benefit has to be given to groups who participate in medical research), which govern all medical research studies conducted by or funded by the federal government, except in emergency settings. Although these Bioethical Principles have the force of law, medical research studies conducted by or funded by the federal government continue to exploit economically disadvantaged minorities by using them for participation in medical research studies for which there is no benefit.
My article begins to address this problem by critically analyzing the current limitations of the Justice Principle to address structural and institutional racial biases in health care, which allow economically disadvantaged minorities to be exploited in medical research studies as they were in the Tuskegee Syphilis Study. Using research conducted on economically disadvantaged minority children as an example, my article shows how even after the creation of the Justice Principle and the passage of the civil rights laws, structural and institutional racial biases remain and have led to the continued exploitation of economically disadvantaged minorities in medical research studies.
Section II of the paper provides a descriptive overview of the purpose and structure of medical research studies and examines the parameters of the Justice Principle. Section III discusses the structural and institutional biases that prevent economically disadvantaged minority children from accessing health care and how this leads to their exploitation in medical research studies. In Section IV, I propose several ways to put an end to exploitation, a violation of the Justice Principle in medical research studies.
Specifically, I suggest that the Justice Principle be redefined to include the Human Development Approach that requires researchers to provide a benefit to the population from which the research subjects originated that alleviates some of the populations’ underlying problems, such as lack of access to health care. To measure whether the research fulfills the Human Development Approach and provides a benefit that alleviates some of the underlying problems, researchers should be required to use the Vulnerability and Equity Impact Assessment (VEIA) tool, which I have created based on the Health Equity Impact Assessment tool. Using the VEIA, a newly created Board of Children would be responsible for approving all medical research studies seeking U.S. government funding that plan to use children. The Board would use the VEIA to determine if the researcher was exploiting economically disadvantaged minority children in violation of the redefined Justice Principle.
Keywords: justice, medical research, impact asessment, equity, children, racial bias
JEL Classification: I14, I18, !3, K32, Z18
Suggested Citation: Suggested Citation