Building Better Biobanks: An Interactive Stakeholder Workshop
Sunday, June 26, 2011
9:00 a.m. – 12:00 p.m.

Building on Saturday’s panel presentations, participants in this session will work together to define the concrete principles, approaches, and processes that make for trustworthy biobank governance. As the number and range of biobanks continues to grow, questions arise about how they should be managed. Who “owns” the biobank? How are biobank participants included in decision making? What kind of communication between the biobank managers and participants is appropriate, and what are the best approaches? How can biobanks ensure that researchers “give back” to those who contribute? These and other questions will be covered, with an eye toward developing a statement of principles and recommendations for best practices. We hope to convene a diverse group for this workshop, including data users, contributors, and managers from advocacy groups, academic research, industry, clinical care, the human subjects and regulatory communities, government, and NGOs. Please join us!

Presenters:
Kelly Edwards – Associate Professor, Department of Bioethics & Humanities, University of Washington
Amy Lemke – Research Assistant Professor, Center for Genetic Medicine, Northwestern University
Sharon Terry – President and CEO, Genetic Alliance