Comparative Approaches to Biobanks and Privacy

12 Pages Posted: 2 May 2016

See all articles by Mark A. Rothstein

Mark A. Rothstein

University of Louisville - Institute for Bioethics, Health Policy, and Law; University of Louisville - Louis D. Brandeis School of Law

Bartha Maria Knoppers

McGill University - Centre for Genomics and Policy

Heather L. Harrell

University of Louisville - Institute for Bioethics, Health Policy, and Law

Date Written: April 22, 2016

Abstract

Laws in twenty 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 regard to privacy and biobanking, and servjng to describe a framework for the process of harmonization of privacy laws.

Keywords: Comparative law, privacy, research ethics, biobanks, genetic research, consent, common rule, IRBs, international law, genomics

JEL Classification: K31, K32

Suggested Citation

Rothstein, Mark A. and Knoppers, Bartha Maria and Harrell, Heather L., Comparative Approaches to Biobanks and Privacy (April 22, 2016). Journal of Law, Medicine and Ethics, Vol. 44, No. 1, 2016. Available at SSRN: https://ssrn.com/abstract=2772696

Mark A. Rothstein (Contact Author)

University of Louisville - Institute for Bioethics, Health Policy, and Law ( email )

Louisville, KY 40202
United States

HOME PAGE: http://www.louisville.edu/bioethics

University of Louisville - Louis D. Brandeis School of Law ( email )

Wilson W. Wyatt Hall
Louisville, KY 40292
United States

Bartha Maria Knoppers

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Heather L. Harrell

University of Louisville - Institute for Bioethics, Health Policy, and Law

Louisville, KY 40202
United States

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