Johns Hopkins bioethicist Nancy Kass is a guest editor of the American Journal of Public Health’s comprehensive look at the current ethical landscape of human subjects research with minority populations.

Over forty years after the United States’ longest-running and most notorious human subjects research study – the Tuskegee Study of Untreated Syphilis in the Negro Male – ended, its legacy still has powerful influence on the practice, policy and perception of human-subjects research.  This influence is underscored in the opening editorial of the American Journal of Public Health’s special issue, published online November 4, in which guest editors use the history of the Tuskegee study to set the stage for their curated discussion of  “The Ethics of Human Subjects Research on Minorities.”

“Historically we have moved from a focus on the protection of minority populations to additionally making sure that they are not so protected that they are excluded from the benefits of research,” says Nancy Kass, one of three guest editors of the special issue and the Deputy Director for Bioethics and Public Health at the Johns Hopkins Berman Institute of Bioethics.  “Looking at today’s research ethics landscape, my fellow guest editors and I wanted to highlight the often-unaddressed ethical issues raised in research recruitment, enrollment and engagement,” Kass says.

The special issue consists of 17 peer-reviewed articles selected by Kass and her co-guest editors Sandra C. Quinn and Stephen B. Thomas of the Maryland Center for Health Equity (M-CHE) at the University of Maryland School of Public Health. The articles address issues of community engagement, recruitment of minority populations and training of health professionals and researchers.  Specific populations addressed include Native Americans and Alaskans, persons with disabilities, and populations at risk of contracting HIV.

The special edition “explores the complex issues related to the ethical inclusion of minority populations in research and the challenges of our country having a research enterprise that is both protective and inclusive, in an environment where the memories of past research abuses continue to resonate,” according to a press release from M-CHE.  The theme issue is one of the scholarly products made possible by the National Bioethics Research Infrastructure Initiative grant from the NIH-NIMHD, “Building Trust Between Minorities and Researchers ” awarded to M-CHE.

The full theme issue is available online now, and the print version will be publishing in December 2014.

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Leah Ramsay

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