Further research and scholarship into the Public Health Service sexually transmitted infection experiments, such as that done recently by Charlene Galarneau (“‘Ever Vigilant’ in ‘Ethically Impossible’: Structural Injustice and Responsibility in PHS Research in Guatemala,” May-June 2013) is critical to the ever-evolving understanding of the ethics of human research and the pedagogical value of the Guatemala experiments as a case study. Scholarship such as Galarneau's is necessary to fully understand what happened in Guatemala from different academic perspectives as well as recognize the steps we need to take as research ethicists to protect current research participants. After releasing “Ethically Impossible”: STD Research in Guatemala from 1946 to 1948, the Presidential Commission for the Study of Bioethical Issues completed three follow-up projects worth highlighting in conjunction with Galarneau's new article precisely because they enable such continuing bioethics scholarship.
First, the commission linked the electronically available Ethically Impossible endnotes of hundreds of original source citations back to redacted electronic versions of the original sources. While the National Archives and Record Administration has posted all of the records documenting the research to its website, the hyperlinked Ethically Impossible allows scholars immediate access to documents within the context provided by the report. Scholars therefore can examine primary sources and also pursue their own analysis and interpretations of the rich source materials.
Second, the commission released the Guatemala Subject Data Spreadsheet, created from lead investigator Dr. John Cutler's documents, to account for all of the subjects of the experiments. No full medical history of the subjects otherwise exists. Demographic information such as age, gender, and population is available alongside medical information such as disease status, STI exposure, and treatment. The data are sortable, so that a scholar can compare treatment of vulnerable populations, evaluate exposure techniques, and analyze treatment regimens—much like Galarneau did for her research with the sex worker data. The commission intends access to these data for ethical and educational use, as opposed to purely scientific. Finally, the commission released a Study Guide to “Ethically Impossible” STD Experiments in Guatemala 1946 to 1948. While Ethically Impossible focused on the fact-finding investigation that was President Obama's charge, the commission developed the Guide for those who wish to focus on the ethical significance of these experiments. The report required chronological construction; the commission broke down the Guide by ethical topic, with discussion questions and further readings.
The commission commends the work of scholars such as Galarneau and hopes to increase the access to primary source and educational materials that make this type of work possible. All of the documents referenced above are currently available at bioethics.gov.
The commission is committed to the government transparency, academic scholarship, and ethics pedagogy that it believes will help researchers and bio-ethicists better understand the exploitation of some research subjects in the past to protect the contribution of all research participants in the future.