Guinea Pig Kids: Myths or Modern Tuskegees?

Abstract

The Tuskegee syphilis study represents a nadir in health research in the U.S., when individuals' bodies were used to satisfy researchers' curiosity with no anticipated clinical benefit. The study is often used as a teaching case, in research methods and biomedical ethics training, symbolizing the past, before the federal government intervened and created human protections regulations to protect participants. The Tuskegee study continues to have other ripple effects, contributing to African Americans' distrust of health research. This paper analyzes three medical studies from the 1990s that involved African American children. We examine the institutional actors that implemented these studies, and the community members of color who protested against them, and compare the tone of media accounts in African American and mainstream publications. We find that powerful governmental and medical institutions collaborated to implement these problematic studies, and that both mainstream and African American news outlets conveyed protestors' concerns about the ethics of the studies, resulting in federal investigations. Our hypothesis that African American outlets provided more negative coverage was not supported, suggesting distrust of biomedicine regarding race is more widespread. The unethical practices reported here raise key questions about the inclusion of both minority populations and children in medical research.

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Notes on contributors

Valerie Leiter

Valerie Leiter is Professor of Sociology and Co-Chair of the Institutional Review Board at Simmons College. Her work focuses on children and youth with disabilities, medicalization, and women's health. She is the author of Their Time Has Come: Youth with Disabilities on the Cusp of Adulthood and the co-editor (with Peter Conrad) of The Sociology of Health & Illness: Critical Perspectives (9th edition).

Sarah Herman

Sarah Herman is a graduate of Simmons College, with a double major in Sociology and Women's and Gender Studies. She has published pieces on food justice, Monsanto, and Rikers Island in The Boston Occupier.