Comparative Approaches to Biobanks and Privacy

Journal of Law, Medicine and Ethics 44 (1):161-172 (2016)
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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.

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Citations of this work

The End of the HIPAA Privacy Rule?Mark A. Rothstein - 2016 - Journal of Law, Medicine and Ethics 44 (2):352-358.
Biobank Regulation in South Korea.Won Bok Lee - 2016 - Journal of Law, Medicine and Ethics 44 (2):342-351.
Bioethics, Complementarity, and Corporate Criminal Liability.Ryan Long - 2017 - International Criminal Law Review 17 (6):997-1021.

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References found in this work

Biobanking: International Norms.Bartha Maria Knoppers - 2005 - Journal of Law, Medicine and Ethics 33 (1):7-14.
Biobanking: International Norms.Bartha Maria Knoppers - 2005 - Journal of Law, Medicine and Ethics 33 (1):7-14.
Biobanking Research and Privacy Laws in the United States.Heather L. Harrell & Mark A. Rothstein - 2016 - Journal of Law, Medicine and Ethics 44 (1):106-127.

View all 6 references / Add more references