“Dear Mr. President:
On behalf of the Presidential Commission for the Study of Bioethical Issues, we present to you this report, “Ethically Impossible”: STD Research in Guatemala from 1946 to 1948. In response to your request of November 24, 2010, the Commission oversaw a thorough fact-finding investigation into the specifics of the U.S. Public Health Service-led studies in Guatemala involving the intentional exposure and infection of vulnerable populations.”
These words open the 1st report of the US Presidential Commission on the Study of Bioethical Issues (the Commission) on the STD Guatemala Study, whose investigation was triggered by the historical analysis of Susan Reverby, Professor in the History of Ideas and Professor of Women’s and Gender Studies at Wellesley College, published in the Journal of Policy History in 2011. Professor Reverby gave a draft of her JPH paper in late June 2010 to Dr. David Sencer, former director of the Centers for Disease Control and Prevention (CDC) and who recently passed away in May 2011. Through Dr Sencer’s, the -at the time- still unpublished paper made it up the chain of command through CDC to the National Institutes of Health, the Department of Health and Human Services (DHHS), the Department of State, and the White House.
On October 1, 2010, Secretary of State Hillary Rodham Clinton and Secretary of DHHS Kathleen Sebelius offered a formal apology to Guatemala for this research, which they called “abhorrent,” “unethical,” and “reprehensible”, as you can read on an older post on this same blog. On November 24, 2010, President Obama charged the Commission with a 9-month task to undertake both a forward-looking assessment of research ethics and an historical review of events that occurred in Guatemala between 1946 and 1948.
During the nine months from January 2011 to September of the same year, the Commission held three public meetings addressing the President’s requests, and heard from experts in law, history, medicine, and ethics, and received testimony from members of the public. With dual responsibilities to give a full and fair accounting of events largely hidden from history for nearly 65 years, and also to provide an assessment of the current system of protection of human subjects, the Commission decided to publish two reports. The first report, that aims to “uncover and contextualize as much as can be known at this time about the experiments that took place nearly 65 years ago”, while also aiming to inform current and continuing efforts to protect the rights and welfare of the subjects of US- sponsored or -conducted research, can be found here.
The “Ethically Impossible” report concludes, unsurprisingly, that many of the actions of the investigators of the study “disregarded principles widely accepted as applicable across time, as well as the standards of our own time that are embodied in the ethics and regulation of biomedical research today”. The Report also aims to reassure insofar as “the Guatemala experiments could not be approved under the current system for protecting human subjects in US-funded research”.
This story can be read as a contemporary instance of the history of medicine shaping and informing the current bioethics agenda at the highest level. While the ethical conclusions of the report are, perhaps necessarily, neither surprising nor particularly original, the work of the Commission was the necessary corollary of the public apology delivered by both Secretary of State Hillary Rodham Clinton, and represents an extremely valuable and extensive historical assessment of the ‘research study’.
Susan Reverby’s article that triggered the Presidential Commission for the Study of Bioethical Issues’ investigation, titled “Normal Exposure” and Inoculation
Syphilis: A PHS “Tuskegee” Doctor in
Guatemala, 1946–1948, and published in the Journal of Policy History in 2011, can be dowloaded here.
“Ethically Impossible”, the full report of the US Presidential Commission for the Study of Bioethical Issues on the STD Research in Guatemala from 1946 to 1948, published in September 2011, can be downloaded from this page.
Secretary of State Hillary Rodham Clinton delivers formal apology for a newly discovered Tuskegee-like study, October 5, 2010, CHH Blog.
President Obama calls for a review of human subjects’ protection following the unraveling of the Guatemala STD study, December 10, 2010, CHH blog.