International Guidelines for Privacy in Genomic Biobanking (or the Unexpected Virtue of Pluralism)

The Journal of Law, Medicine & Ethics, p. 690, Winter 2015

13 Pages Posted: 17 Jan 2016

See all articles by Adrian Thorogood

Adrian Thorogood

McGill University - Centre for Genomics and Policy

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy

Date Written: December 29, 2015

Abstract

This article reviews international privacy norms governing human genomic biobanks and databases, and how they address issues related to consent, secondary use, de- identification, access, security, and governance. A range of international instruments were identified, varying in substance — e.g., human rights, data protection, research ethics, biobanks, and genetics — and legal character. Some norms detail processes for broad consent, namely, that even where potential participants cannot consent to specific users and uses, they should be given clear information on access policies, procedures, and governance structures. Some also give guidance about the conditions under which secondary use of data and samples without consent is appropriate, e.g., where consent is impracticable. International norms exhibit a confusing range of terminology relating to de-identification. They also continue to rely heavily on consent and anonymity as the basis for privacy protection, though governance is becoming more prominent. It may not be fatal that such a plurality of norms apply to biobanking; what is essential is that governance be built on shared values, our common interest in the success of genomic research, and practical tools that incentivize responsible, global sharing.

Keywords: International Guidelines, Privacy, Genomic Biobanking, Biobanking, Pluralism

Suggested Citation

Thorogood, Adrian and Zawati, Ma'n H., International Guidelines for Privacy in Genomic Biobanking (or the Unexpected Virtue of Pluralism) (December 29, 2015). The Journal of Law, Medicine & Ethics, p. 690, Winter 2015 , Available at SSRN: https://ssrn.com/abstract=2716341

Adrian Thorogood

McGill University - Centre for Genomics and Policy ( email )

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

Ma'n H. Zawati (Contact Author)

McGill University - Centre of Genomics and Policy ( email )

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

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