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

Applying lessons learned in Guatemala to research today: Exploring the PCSBI Study Guide

The Presidential Commission for the Study of Bioethical Issues has consistently noted the marked need for effective ethics education. With this commitment in mind, the Commission recently released a companion study guide to its 2011 historical investigation report, “Ethically Impossible” STD Research in Guatemala from 1946 to 1948,in which the Commission detailed the egregious treatment of vulnerable populations in Guatemala by researchers during the 1940s.  The new companion piece, A Study Guide to “Ethically Impossible” STD Research in Guatemala from 1946 to 1948 serves as a supplement for instruction in existing bioethics courses and seeks to provide resources to instructors teaching responsible conduct of research (RCR) courses.  Given this wide audience, the Study Guide includes discussion questions and suggested readings appropriate to undergraduate and graduate-level coursework, and allows instructors to use the report and related materials to illustrate the ethics topics of their choice.

In the now well-documented Guatemala case, the U.S. Public Health Service approved research that exposed individuals to STDs and then failed to subsequently treat all of them.  Researchers drew from susceptible populations including prisoners and the mentally ill; intentionally deceived some subjects about the nature of the study and what was being done to them; and there is no record of any of the subjects giving consent.

For the purposes of teaching ethics, the challenge facing instructors is to translate this historical event into lessons pertinent to the experience of modern day researchers. The set of case studies provided by the Study Guide is accessible to the average student and promotes guided ethics discussion based on real world examples and historical documents. The Study Guide takes students through difficult questions that arise when it is necessary to make moral assessments about unethical events in the distant past and applies such lessons to the present. The Study Guide covers various topics that can be incorporated into ethics courses as a whole, or independently as individual modules. These topics include: research with vulnerable populations; issues of race, consent and deception; ethical aspects of informed consent; and ethical aspects of methodological design and publication.

For existing bioethics curricula, the Study Guide enables instructors to expose students to a period in U.S. history with resources that lend the case context, including how researchers planned and carried out the Guatemala experiments.  The inclusion of primary sources right in the text of the Study Guide allows students to see an example of an historical investigation and its place within the interdisciplinary practices of bioethicists. Instructors new to teaching ethics will find an array of materials to choose from, starting with a sampling of basic research ethics texts and resources to introduce students to the work of previous presidential bioethics commissions and the ethical foundations of research regulation.  Subsequent sections allow instructors to pick and choose topics that fit with the course design they have in mind.

By extrapolating to ethical issues beyond the individual case and encouraging students to view contemporary research in the same light, students are introduced not only to the ethical errors of the past, but also to the method of casuistry and a particular form of moral reasoning; students reflect on what makes this case immoral and what makes it similar to, or different from, other cases. Recommended readings span a wide range, allowing instructors to engage students on questions that bridge the highly theoretical (e.g., whether our moral concepts are stable enough to allow for retrospective judgment of the past) and the highly practical (e.g., when an individual can give consent on behalf of another).  As a result, the resources included speak to a broad audience within research ethics education, providing a jumping off point for some and a much-needed starting place for others.

This post can also be seen on Ampersand, the blog of Public Responsibility in Medicine and Research (PRIM&R).

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This is a space for the members and staff of the Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

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