Monthly Archives: December, 2012
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 [...]
Recent Workshop on “Ethically Impossible” Study Guide Hosted by PRIM&R
Commission Senior Advisor Paul Lombardo, Ph.D., conducted a workshop about the Commission’s newly developed teaching resource, A Study Guide to “Ethically Impossible” STD Research in Guatemala, at the Advancing Ethical Research annual conference hosted by Public Responsibility in Medical Research (PRIM&R). PRIM&R, a professional group working to advance the ethical conduct of research with humans [...]
Considering Opt In vs. Opt Out Consent Procedures in WGS Research
When it comes to whole genome sequencing research, consent procedures can be complex, especially for the patient. Some patients could be unaware that their whole genome sequence data might be used in future research without additional consent. To highlight the issue, consider this hypothetical example: After a painful gallbladder attack, 27-year-old Cindy allowed surgeons to [...]
Executive Director Lisa M. Lee Presents “Privacy and Progress” at Personalized Medicine Conference
Presidential Commission for the Study of Bioethical Issues Executive Director Lisa M. Lee, Ph.D., M.S., presented the Commission’s recent report, Privacy and Progress in Whole Genome Sequencing at the 8th Annual Personalized Medicine Conference at the Harvard Medical School in Boston. The conference, held November 28-29, is organized by Harvard Medical School, Harvard Business School, [...]
Commission Member Anita Allen Presents “Privacy and Progress” at Cold Spring Harbor Laboratory Meeting
Presidential Commission for the Study of Bioethical Issues Member Anita Allen, J.D., Ph.D., presented the Commission’s most recent report, Privacy and Progress in Whole Genome Sequencing, to a key audience of clinicians and scientists whose work involves the very technology the report addresses. Allen’s presentation was part of an Ethics Panel at the Cold Spring [...]
