Returning Genetic Results in Biobanks: Opening an International Dialogue
Invitational Workshop
November 19, 20 & 21, 2013
Geneva, Switzerland
Brocher Foundation
Organizers
- Barbara A. Koenig, PhD, University of California, San Francisco
- Jane Kaye, DPhil, LLB, Oxford University
- Bernice Elger, MD, PhD, MA, University of Basel
- Susan M. Wolf, JD, University of Minnesota
This invitational workshop brought together 31 leading researchers and scholars from around the world, all experts in the ethical, legal and social implications (ELSI) of genetic technologies and biobanking to explore the issue of feedback of incidental findings and results to research participants. It was an international and comparative dialogue on the cutting-edge issue of sharing findings with a participant’s family and genetic kin, including after the participant’s death.
The workshop served to enhance the work of ELSI 2.0 for Genomics and Society, the U.S.-based Return of Results Consortium/CSER ELSI Working Group, and H3Africa. In addition, it resulted in a set of papers comparing international approaches to return of results and incidental findings and created rich online international resources to support development of sound policy and practices in the global genomics community.
The Consortium on Law and Values, led by Prof. Susan Wolf, continues its work on this issue as a co-organizer of the workshop, which is related to her NIH-funded grant on “Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment.”
Funding for this workshop was provided by the Brocher Foundation, the National Human Genome Research Institute (NHGRI)/National Institutes of Health (NIH), the Wellcome Trust, and the Swiss Academy of Medical Sciences.
New Directions in Environmental and Energy Law, Policy, and Geography
May 3–5, 2012
University of Minnesota Law School, Rare Books Library
Sponsored by the University of Minnesota's:
- Consortium on Law and Values in Health, Environment & the Life Sciences
- Institute on the Environment
Revamping the Law & Policy of Reproductive Technologies: Children First?
June 12, 2013
This groundbreaking workshop brought together advocates and analysts of artificial reproductive technology (ART) and offspring interests with ART practitioners, as well as major thinkers about the theory and practice of ART. It turned the spotlight on the needs and rights ART offspring and their families are asserting and considered how the practice of ART should change.
This workshop was funded by a grant from the Robina Foundation through the University of Minnesota Law School LaPPS fund and is co-sponsored by the University’s Center for Bioethics.