Comparative Approaches to Biobanks and Privacy
12 Pages Posted: 2 May 2016
Date Written: April 22, 2016
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: Suggested Citation