November 15, 2012
Washington, D.C. – The Presidential Commission for the Study of Bioethical Issues today released an ethics study guide based on the Commission’s investigation into the U.S. Public Health Service (PHS) experiments conducted in Guatemala in the 1940s. A Study Guide to “Ethically Impossible” STD Research in Guatemala from 1946 to 1948 is designed for use by higher education and other interested members of the public. It is free and available for immediate use in classrooms and elsewhere at www.bioethics.gov.
“As the world is now aware, the PHS research involved intentionally exposing vulnerable populations to sexually transmitted diseases without the subjects’ consent,” said Commission Chair Amy Gutmann, Ph.D. “Two years ago the revelation of that research resulted in President Obama asking the Bioethics Commission to conduct a thorough fact-finding investigation into the unethical studies.”
“The Commission has consistently noted the marked need for more ethics education,” Gutmann added. “We have developed this Study Guide to Ethically Impossible to help educate students at all institutions, including those without ethics departments or access to ethics curricula. The Study Guide enables students to view this period in our history in a more complete context, including how the Guatemala research was planned and took place.”
The Commission is an independent, deliberative panel of experts that advises the President and the Administration and, in so doing, also educates the nation on bioethical issues. The set of case studies is designed to be accessible, and to promote guided ethics discussion based on real world examples.
“Students will be able to assess internal agency debates about its scientific validity and its political sensitivity for themselves” said historian Paul Lombardo, a senior advisor to the Commission, who plans to teach a seminar on the Guatemala STD research at Georgia State University in Atlanta. “They will also be able to experience the difficult questions that arise when it is necessary to make moral assessments about unethical 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.”
The Commission’s findings and ethical assessment of those events, documented in its report “Ethically Impossible” STD Research in Guatemala 1946 to 1948 (released September 2011), illustrate how the quest for scientific knowledge without regard to relevant ethical standards can blind researchers to the humanity of the people they enlist into research.
As the Commission assessed the current rules and regulations in place that protect human participants in research, it called for expanded ethics discourse and education. In its report Moral Science: Protecting Participants in Human Subjects Research (released December 2011), the Commission wrote:
To ensure the ethical design and conduct of human subjects research, universities, professional societies, licensing bodies, and journals should adopt more effective ways of integrating a lively understanding of personal responsibility into professional research practice. Rigorous courses in bioethics and human subjects research at the undergraduate as well as graduate and professional levels should be developed and expanded to include ongoing engagement and case reviews for investigators at all levels of experience.
“We sincerely hope that college and university professors incorporate this into their already existing ethics classes, or use it to present an ethics discussion in a science, law, medical, history, or any other class,” Gutmann said. “Informal groups of students could use this for self guided discussion. Even book groups or lunch time discussion groups at the office could use this. The point is to get us all talking about ethics. Encouraging people to talk about what happened in Guatemala, and to think and to learn about ethics is another way to both honor the memory of the victims and help ensure that society learns from these offenses.”