Workshops: Session IV
Saturday, June 25 2011
3:30 p.m. – 5:00 p.m.

Ethical, legal, and social issues are at the forefront of biobanking. This session will provide case studies of several biobanking governance models found in for-p rofit, academic, and nonprofit biobanks. The presentation will also tackle import governance questions: Who has access to data and samples? Who should have access? How are results reported to participants? A lively panel discussion will address issues including data sharing, stewardship, privacy, and transparency in biobanking.

Presenters:
Susan Brown Trinidad – Research Scientist, University of Washington
Kelly Edwards - Associate Professor, University of Washington School of Medicine
Liz Horn – Director, Genetic Alliance BioBank
Helen Moore – Biospecimen Research Network Program Manager, Office of Biorepositories and Biospecimen Research, National Cancer Institute, NIH
Suzanne Vernon – Scientific Director, CFIDS Association of America