Bioethics Forum Essay
Ethically Impossible: New Educational Tools
Reports from Presidential bioethics commissions, like most government reports, usually have a short shelf life. But perhaps because it was the subject of extensive media commentary, “Ethically Impossible” had a chance of surviving the usual fate of instant obscurity. It prolonged discussion and debate over an infamous example of research malfeasance by a government agency that was hidden from view for almost 65 years. The report itself spanned 200 pages, with more than 700 citations to the records of Dr. Cutler and thousands of other documents. Like similar reports, the published version was only the tip of the investigative iceberg. Both the report text and its notes represented untold hours of digging through archives and published materials by Commission staff members and similarly extensive deliberations by the Commission Members themselves. The report contained appendices that summarized much of this effort, but for obvious practical reasons, making all of it accessible in a printed document was impossible.
But in this age of digital document storage, another option appeared, and three other online electronic sources now exist to extend the reach of “Ethically Impossible.”All are available at bioethics.gov. First, the report itself is online in PDF form, both in English and Spanish. Second, the Commission has just released and posted A Study Guide to “Ethically Impossible.” It is free and available for immediate use in classrooms and elsewhere. TheStudy Guideis designed to be accessible to university students, professionals of all types, and members of the public who are interested in developing a more thorough understanding of the historical and ethical issues that arose in investigating the PHS studies. The guide raises questions that refer to particular events described within “Ethically Impossible” or the documents it references. Each section in the guide is followed by a bibliography directing the reader to sources for further study.
In addition, each publically available document (from government archives, publications and reports) is connected to the online report via hyperlink. If a contemporaneous letter from Dr. Cutler to a colleague discussing concerns related to the ongoing STD studies was cited, a virtual copy of that letter is linked to the source note. If Cutler mentioned a specific procedure or study location in his laboratory record, the actual pages containing his comments are linked to the notes. By clicking on the link, any reader can review the same documentation that the Commission used in compiling an historical summary of events in Guatemala and in performing an ethical analysis of their significance.
A Subject Data Spreadsheet is the third online resource connected to the Commission report. Commission staff developed it to collect information on each person who became a research subject in Guatemala, and track the specific studies in which they participated. It includes a detailed compilation of all the research subject information in the Cutler files and identifies the subject populations and the procedures researchers performed on them. The online spreadsheet (absent research subject names) presents data from 7,000 subject note cards and a variety of research notebooks and reports that describe the STD research in minute detail.
The PHS/ Guatemala case is already being mentioned alongside Tuskegee, Willowbrook and the Chronic Diseases Hospital Case as an incident in the history of U.S. bioethics worth exploring more fully in courses on research ethics. In 2013 I will be teaching a seminar on the Guatemala STD research to a class that will consist of law students and public health graduate students. The Commission report will be the focal point of the course, since it provides a roadmap to many of the materials that describe the context in which the studies began. Those materials will be available to students online at no cost, and should provide an instant frame of reference for class discussions and a rich source of topics for student papers.
Students who use “Ethically Impossible” and the related online resources will have the opportunity to view, within a more complete context, how the Guatemala research was planned and how it took place. They will be able to assess internal agency debates about its scientific validity and its political sensitivity for themselves. They will also be able to experience the difficult questions that arise when it is necessary to make moral assessments about events in the distant past.
This depth of background has not been easily available for students who examine most other incidents in the history of bioethics. These new tools for studying the PHS/Guatemala studies fit the digital age we work in. These efforts demonstrate the Presidential Commission’s commitment to transparency. It keeps the sources used in this historical investigation durable and more accessible to students, educators, and the public.
Paul A. Lombardo, Ph.D., J.D. is the Bobby Lee Cook Professor of Law at Georgia State University in Atlanta and a Senior Advisor to the Presidential Commission for the Study of Bioethical Issues. This post originally appeared on the Presidential Commission’s blog.
Posted by Susan Gilbert at 11/15/2012 05:37:23 PM |