Should We Offer Genomic Results to a Research Participant’s Family, Including After Death?
Thursday, November 6, 2014
Hubert H. Humphrey Center
301 19th Ave. So., Minneapolis, MN
University of Minnesota
National conference is first to explore family access to results of genomic sequencing
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.
At this conference, which grows out of the first NIH-funded project dedicated to this emerging area of bioethics, experts will grapple 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.
This conference is intended for researchers, research participants and their relatives, research oversight authorities, policymakers, biobank directors, physicians and other clinicians, bioethicists, patients and their family members, faculty, students, and members of the public.
Registration fees are $150/$50 for students. Registration fees include breakfast, lunch, continuing education credits, and parking in the 19th Avenue or 21st Avenue Ramps.
Tuition waivers available -- contact email@example.com
To register, click here.
Directions and a map for Cowles Auditorium in the Hubert H. Humphrey Center may be found by visiting http://www1.umn.edu/twincities/maps/HHHSPA/.
The closest parking ramps are the 19th Avenue or 21st Avenue ramps. For more information on parking options, including directions and a map to both ramps, click here.
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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.
Supported by NIH grant #R01-CA154517 from the National Cancer Institute and National Human Genome Research Institute