If researchers discovered a member of your family has a gene that increases risk of some types of cancer, would you want to know? If you learned you have such a gene, would you want it revealed to your relatives? These real-world dilemmas pit personal privacy against the health concerns of family members. And the explosion of research on genomics – sometimes looking at a research participant’s entire genome and identifying many gene variants of concern – makes this a pressing problem.
There is little guidance right now for researchers on how to balance an individual’s privacy with family health concerns. And in many studies, especially on cancer genomics, the research participant may die, leaving researchers with no idea whether they can reach out to offer family members the deceased individual’s results. These policy gaps can leave siblings, children, and other relatives without crucial information about their own potential health conditions.
This conference grew out of the first NIH-funded project dedicated to this emerging area of bioethics. Experts grappled with whether researchers should share results of genomic sequencing with family members and, if so, how best to do it. Policy recommendations from this conference could ultimately be applied across the nation, having a major impact on the future of genomics in U.S. health care. What’s at stake is how we as a society balance individual privacy against family access in the new era of genomic sequencing.
Check out news coverage for this conference:
- "Does Your Genome Belong to Your Family?" Science Friday, National Public Radio
- "Genetic privacy: Who should know what your tests reveal?" Minnesota Public Radio News
- "Genomic research stirs privacy debate," Minneapolis Star Tribune
- "Health, privacy: A tricky balance," Minnesota Daily
Supported by the National Institutes of Health (National Cancer Institute and National Human Genome Research Institute) grant #R01-CA154517
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- University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences
- Mayo Clinic
- Center for Transdisciplinary ELSI Research in Translational Genomics at the University of California, San Francisco.