The blog of the Presidential Commission for the Study of Bioethical Issues

Recent Workshop on “Ethically Impossible” Study Guide Hosted by PRIM&R

Paul Lombardo, Ph.D.

Commission Senior Advisor Paul Lombardo, Ph.D., conducted a workshop about the Commission’s newly developed teaching resource, A Study Guide to “Ethically Impossible” STD Research in Guatemala, at the Advancing Ethical Research annual conference hosted by Public Responsibility in Medical Research (PRIM&R).  PRIM&R, a professional group working to advance the ethical conduct of research with humans and animals, held its conference December 4-6.  The Study Guide was a natural fit for PRIM&R’s members, including researchers, hospital and university administrators, participant advocates, industry stakeholders, and institutional review board (IRB) members.

Lombardo provided a brief overview of the now well-documented Guatemala case, in which the U.S. Public Health Service approved research that intentionally deceived some individuals, exposed members of vulnerable populations to STDs and then failed subsequently to treat all of them.  The Study Guide serves as a companion to the Commission’s report on its historical investigation of the Guatemala research. Readers of the Study Guide will find copies of primary source documentation leading up to and regarding implementation of the STD research.  Correspondence between members of the Public Health Service and researchers helps to place the case in its historical context, and to engage readers in thoughtful discussion.

The session was well attended by 50-60 members of the research community.  Some teachers had already used the Commission’s report in the classroom, while others expressed interest in the relevance of the report and Study Guide to IRB and research ethics training.  For these professionals, the Study Guide is structured in segments that allow users to discuss different aspects of the research in short and manageable portions.  Lombardo says this format lends itself to short, periodic educational sessions such as those provided at IRB annual retreats, or monthly meetings.

Discussion also included translating of the unethical research in Guatemala into concrete lessons for contemporary researchers.  For example, one question from the audience addressed the challenges of whistle-blowing, and whether research assistants involved in the Guatemala case, as well as those today, could openly express reservations without facing retaliation.  Lombardo suggested that these insights reveal the importance of “not just thinking of these Guatemala researchers as monsters, but trying to understand what they were thinking and why,” as well as the larger context that influences research conduct.  Lombardo believes that such reflections better enable us to construct more supportive research environments, and to educate ethical researchers.

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