title: Comparative Approaches to Biobanks and Privacy.
abstract: Laws in the 20 jurisdictions studied for this project display many similar approaches to protecting privacy in biobank research. Although few have enacted biobank-specific legislation, many countries address biobanking within other laws. All provide for some oversight mechanisms for biobank research, even though the nature of that oversight varies between jurisdictions. Most have some sort of controlled access system in place for research with biobank specimens. While broad consent models facilitate biobanking, countries without national or federated biobanks have been slow to adopt broad consent. International guidelines have facilitated sharing and generally take a proportional risk approach, but many countries have provisions guiding international sharing and a few even limit international sharing. Although privacy laws may not prohibit international collaborations, the multi-prong approach to privacy unique to each jurisdiction can complicate international sharing. These symposium issues can serve as a resource for explaining the sometimes intricate privacy laws in each studied jurisdiction, outlining the key issues with regards to privacy and biobanking, and serving to describe a framework for the process of harmonization of privacy laws.
authors.affiliation: Mark A. Rothstein, J.D., is the Herbert F. Boehl Chair of Law and Medicine, and Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine. Bartha Maria Knoppers, Ph.D., is a Professor of Medicine and Director of the Centre of Genomics and Policy at McGill University. Heather L. Harrell, M.D., J.D., is a Research Professor at the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine.
authors.forename: Mark A
authors.initials: MA
authors.lastname: Rothstein
authors.affiliation: Mark A. Rothstein, J.D., is the Herbert F. Boehl Chair of Law and Medicine, and Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine. Bartha Maria Knoppers, Ph.D., is a Professor of Medicine and Director of the Centre of Genomics and Policy at McGill University. Heather L. Harrell, M.D., J.D., is a Research Professor at the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine.
authors.forename: Bartha Maria
authors.initials: BM
authors.lastname: Knoppers
authors.affiliation: Mark A. Rothstein, J.D., is the Herbert F. Boehl Chair of Law and Medicine, and Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine. Bartha Maria Knoppers, Ph.D., is a Professor of Medicine and Director of the Centre of Genomics and Policy at McGill University. Heather L. Harrell, M.D., J.D., is a Research Professor at the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine.
authors.forename: Heather L
authors.initials: HL
authors.lastname: Harrell
mesh_terms: D022126:Access to Information; D018070:Biological Specimen Banks; D003219:Confidentiality; D006801:Humans; D018907:Privacy