Today the Presidential Commission for the Study of Bioethical Issues posted on its website, www.bioethics.gov, hundreds of supporting documents related to its investigation into the U.S. Public Health Service (PHS) studies conducted in Guatemala in the 1940s. The documents include a spreadsheet that Commission staff painstakingly created to document the research subjects in Guatemala. In addition, the Commission has posted a Spanish translation of its report, "Ethically Impossible" STD Research in Guatemala from 1946 to 1948.
As the world is now aware, the PHS research involved intentionally exposing and infecting vulnerable populations to sexually transmitted diseases without the subjects' consent. The revelation of the research led to an apology from President Obama to the President of Guatemala. It also resulted in a request from President Obama to the Commission for a thorough fact finding investigation into the U.S. PHS studies.
The Commission completed its historical investigation and sent its final report to the White House last September. The full report posted on bioethics.gov now includes hyperlinks to the supporting historical documents cited in the endnotes.
"The Commission made a full commitment to identify the full facts in this case with the understanding that telling the story of the research subjects in Guatemala honors the victims and helps prevent such unethical treatment from occurring again," said Valerie Bonham, J.D. Executive Director.
"The Commission's report provided a framework for understanding the context in which the Guatemala studies occurred," said historian Paul Lombardo, Ph.D., J.D., a senior advisor to the Commission. "Posting the source documents upon which the report is based on the Web will encourage further exploration-- both by scholars and members of the general public-- of the historical and ethical issues raised by the Guatemala experience."
In order to identify the number of individuals involved in the research, and to better understand what happened to them, Commission staff read, analyzed and transcribed the nearly 10,000 pages of research notes left behind by Dr. John Cutler with a particular focus on information about individual research subjects. Commission staff created a Subject Data Spreadsheet made up of individual research subject information. Commission staff redacted the names of the research subjects.
"The Commission is making the spreadsheet and the other source documents readily available to the public to encouraging further study of this dark chapter of history," Bonham said.