Should We Offer Genomic Results to a Research Participant’s Family, Including After Death?
November 6, 2014
Hubert H. Humphrey Center
301 19th Ave. So., Minneapolis, MN
University of Minnesota
Space is limited. Advance registration is strongly encouraged.
This conference will tackle a frontier issue of growing urgency—whether genomics researchers and biobanks should offer individual research results to a participant’s family members, including after the participant’s death. While research ethics and privacy law protect individuals, genetics is shared. Biological family members will have some proportion of their genes in common, giving them a stake in learning a relative’s results. This tension between individual rights and family interests is a growing problem in genomic research. Research using exome and genome sequencing readily generates findings of potential health and reproductive importance to individual participants. To date, debate and recommendations have focused on what research results and incidental findings to offer back to those individuals themselves. However, genomic research typically involves collecting large amounts of data on individuals and archiving those data for analysis into the future, when the research participant may be deceased, especially in studies of cancer genomics. Family members may seek access to a relative’s data. Researchers and biobanks may also wonder whether to reach out to relatives to offer findings of high potential clinical importance.
This conference will present the first consensus recommendations on sharing individual research results and incidental findings with family members, including after a research participant’s death. These recommendations grow out of a multi-year grant project funded by the National Institutes of Health (NIH) and conducted collaboratively at the University of Minnesota, Mayo Clinic, and University of California, San Francisco. Project members and other top national experts will further explore these issues in adult and pediatric research, across a wide range of research populations, and in different research contexts. Core to the issues debated will be consideration of the relationship of research to clinical care, especially in an era of rapidly progressing genomics and translation to clinical care. Conference presenters include leading researchers, federal policy-makers, and key stakeholders. Conference sessions will combine plenary presentations with concurrent sessions to ensure active audience involvement in the debate.
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: $150 ($50 for students). Please note that registration fees include breakfast, lunch, continuing education credits, and parking in the 19th Avenue Ramp.
Limited scholarships are available by contacting firstname.lastname@example.org.
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 ramp is the 19th Avenue Ramp. For more information on parking options, including directions and a map to the 19th Avenue Ramp, visit http://www1.umn.edu/pts/park/facilities/19thaveramp.html.
Continuing Legal Education (CLE)
An application for Continuing Legal Education (CLE) will be filed.
Office of Continuing Professional Development
An application will be submitted to the University of Minnesota for AMA PRA Category 1 Credits™. The University of Minnesota is accredited by the ACCME to provide continuing medical education for physicians. Determination of credit is pending.
• 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