HHS Advisory Panel to Look at Medical Privacy of Families
An HHS advisory panel will today begin drafting medical research guidelines concerning the privacy protection needs of family members of patients, the Los Angeles Times reports. Current informed consent" laws, which require people participating in research projects to receive information about the "potential risks" of participation, do not "specifically address family members or other individuals whose privacy could be invaded," the Times reports. Mary Faith Marshall, chair of the HHS advisory panel and director of the bioethics program at the University of Kansas Medical Center, said that family members represent "a new generation of privacy issues -- uncharted territory. We are pushing a new envelope and need to come up with new answers." Panel member Abbey Meyers added, "Family members need to know if information about themselves is to be used," but she added that requiring family members to give consent could "halt" ongoing research (Cimons, Los Angeles Times, 4/8).
Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said that if information provided in a research project could "harm" a family member, researchers must have that person's permission to obtain the information. He added, "I don't care if [giving permission] slows research. I don't care if it costs more. The research community ... has to stop being on the wrong side of this issue" (Rubin, USA Today, 4/9). Francis Collins, director of the National Human Genome Research Institute, said, "Much of our hope in understanding inherited conditions lies in our being able to study families."
The advisory panel is not expected to set a "rigid" reporting standard, but instead to "encourage local review boards to consider certain criteria" in evaluating a research proposal. Such a "blueprint" would give the local boards "latitude" to make decisions, the Times reports. Marshall said, "[W]e would be remiss if we didn't try to answer ... questions [about family members' participation] and come up with the best answer we can, one that does the most good and involves the least amount of harm. Sometimes, in bioethics, that's the best you can do" (Los Angeles Times, 4/8).This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.