News
Foundation's Ethical Issues Working Group article examines role in responsible patient advocacy
Richard R. Sharp, PhD, Chair of the Foundation’s Ethical, Legal & Social Issues Working Group, and the working group members have published an article in the current American Journal of Medical Genetics examining the role of an ethics advisory board in a patient advocacy group.
“Patient advocacy groups play an increasingly prominent role in patient care and clinical research” the article says. It continues:
“To help manage some of the unique challenges associated with the involvement of patient-centered organizations in the delivery of medical services and conduct of clinical research, patient advocacy groups may wish to establish an ethics advisory board.
“Although hospitals and government agencies often adopt
this approach, ethics advisory boards have not been widely
used by patient advocacy groups. We report on the
experiences of an ethics advisory board for a patient
advocacy group actively involved in genetic testing and
clinical research. Drawing on the experiences of this
organization, we examine the potential advantages and
limitations of this approach to navigating the complex
moral terrain of contemporary medicine and biomedical
research.”
