title: International Guidelines for Privacy in Genomic Biobanking (or the Unexpected Virtue of Pluralism).
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.
authors.affiliation: Lawyer and an Academic Associate at the Centre of Genomics and Policy at McGill University. He is a member of the Bar of Ontario and earned his joint common law and civil law degree from McGill University in Quebec, Canada.
authors.forename: Adrian
authors.initials: A
authors.lastname: Thorogood
authors.affiliation: Lawyer, Academic Coordinator of the Centre of Genomics and Policy, and an Associate Member of the Biomedical Ethics Unit, McGill University. He is a member of the Quebec Bar.
authors.forename: Ma'n H
authors.initials: MH
authors.lastname: Zawati
mesh_terms: D022126:Access to Information / Q000331:legislation & jurisprudence; D018070:Biological Specimen Banks / Q000331:legislation & jurisprudence / Q000592:standards; D030541:Databases, Genetic / Q000331:legislation & jurisprudence / Q000592:standards; D030661:Genetic Privacy / Q000331:legislation & jurisprudence / Q000592:standards; D036281:Genetic Research; D006801:Humans; D007258:Informed Consent; D038622:Internationality