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The Guatemalan Syphilis Trials, Community Engagement, and the Common Rule

ABSTRACT As the revised U.S. Common Rule took full effect in January 2019 a noteworthy class action lawsuit reached the discovery stage; the suit is against several prominent research institutions associated with the ethical violations in the U.S. Public Health Service syphilis trials in Guatemala almost 70 years ago. Our commentary explores whether the revised Common Rule would offer meaningful safeguards against the harms that were experienced by Guatemalan research subjects in the 1940s, the research partnerships that enabled them, and the collective impact of these individual harms on Guatemalan society. We note that the U.S. Presidential Commission for the Study of Bioethical Issues, which was charged with investigating the syphilis trials, proposed greater emphasis on community engagement in research as part of the path forward. Yet the revised Common Rule does not include requirements for community engagement. We take up the Presidential Commission’s effort to promote community engagement in research by expanding on the ethical rationales for its use—drawing on our own extensive work in this area—and illustrating community engagement’s unique value in reference to the nature of the harms inflicted in Guatemala.

KEYWORDS human research ethics, Guatemalan syphilis experiments, research harms, community engagement

Published on: May 21, 2019
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