“Moral Science,” the seventh episode of the Bioethics Commission’s podcast series Ethically Sound, is now available. Ethically Sound is based on the 10 reports that the Bioethics Commission has produced during its tenure. Established in 2009 by Executive Order, the Bioethics Commission has addressed a variety of ethical challenges ranging from whole genome sequencing to public health planning and response. This episode is based on the Bioethics Commission’s third report Moral Science: Protecting Participants in Human Subjects Research.
In what is now recognized as an infamous episode in the history of research ethics, the U.S. Public Health Service (PHS) conducted unethical sexually transmitted disease (STD) experiments in Guatemala from 1946 through 1948. The Guatemala STD experiments were carried out with ongoing oversight by PHS and with the approval and engagement of Guatemalan government officials. They involved intentionally exposing and infecting 1,308 person from vulnerable Guatemalan populations—prisoners, soldiers, sex workers, and psychiatric patients—to disease, without their consent. When these studies were revealed in 2010, President Barack Obama extended an apology to the President and people of Guatemala, and charged the Bioethics Commission to conduct an ethical analysis of the research that took place, and to review current federal regulations to protect research participants. The Bioethics Commission addressed the first part of this charge in its report Ethically Impossible: STD Research in Guatemala from 1946-1948. Moral Science addressed the second part of this charge. The commission found that the kinds of unethical conduct that occurred during the studies conducted in Guatemala from 1946-1948 could not occur under today’s federal protections for research participants. Federal protections generally appear to protect people from avoidable harm or unethical treatment in research conducted or supported by the federal government. However, the commission also found that there is room for improvement in how federally-funded research studies involving human subjects are conducted. In Moral Science, the Bioethics Commission presented 14 recommendations regarding various aspects of protecting human subjects in federally funded research.
The podcast opens with a narrative from Dr. Jerry Menikoff, the Director of the Office for Human Research Protections (OHRP). Dr. Menikoff presented before the Bioethics Commission during its fifth public meeting, where he discussed the role of OHRP in protecting research participants. In this episode Dr. Menikoff shared how the protection of research participants became a central focus in his career, and recounted an eye-opening experience he had while serving on an institutional review board. Following the recollection, Dr. Menikoff said “Since then, making sure that people who are thinking about participating in clinical trials are given the information they need to make fully informed decisions has been an important part of my life’s work.”
The podcast also includes an interview with Bioethics Commission member Dr. Nita Farahany, Director of Science and Society at the Institute for Genome Sciences and Policy at Duke University. Hillary Wicai Viers, former Communications Director with the Bioethics Commission staff, conducted the interview. Dr. Farahany discussed the importance of ethics education for researchers, and how new technologies will shape protections for research participants. Regarding new technologies, Dr. Farahany said, “It’s essential for that kind of research to continue to afford the same kind of protection to human subjects.”
Episode 7 is now available on our website, as well as on our SoundCloud, YouTube and iTunes pages. In addition to this episode, listeners can access the first six episodes of Ethically Sound. Listeners can follow the podcast using #EthicallySound or by following us on Twitter @bioethicsgov. Stay tuned for the eighth episode in our series, “Ethically Impossible,” which will be available on October 31, 2016. We welcome comments and feedback at firstname.lastname@example.org.