Secondary Uses and the Governance of De-Identified Data: Lessons from the Human Genome Diversity Panel [Book Review]
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
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BMC Medical Ethics 12 (1):16- (2011)
Background: Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel. Methods: Using a combination of keyword and cited reference search, we identified English-language scientific articles published between 2002 and 2009 that reported analysis of HGDP Diversity Panel samples and/or data. We then reviewed each article to identify the specific research use to which the samples and/or data was applied. Secondary uses were categorized according to the type and kind of research supported by the collection. Results: A wide variety of secondary uses were identified from 148 peer-reviewed articles. While the vast majority of these uses were consistent with the original intent of the collection, a minority of published reports described research whose primary findings could be regarded as controversial, objectionable, or potentially stigmatizing in their interpretation. Conclusions: We conclude that potential risks to participants and communities cannot be wholly eliminated by anonymization of individual data and suggest that explicit review of proposed secondary uses, by a Data Access Committee or similar internal oversight body with suitable stakeholder representation, should be a required component of the trustworthy governance of any repository of data or specimens
|Keywords||info:mesh/United States info:mesh/Human Genome Project info:mesh/Guidelines as Topic info:mesh/Europe info:mesh/Humans info:mesh/Genetic Research info:mesh/Polymorphism, Single Nucleotide info:mesh/Confidentiality Humans Confidentiality Genetic Research Human Genome Project Polymorphism, Single Nucleotide Ethics, Research United States Europe Guidelines as Topic info:mesh/Ethics, Research|
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References found in this work BETA
Mark A. Rothstein (2010). Is Deidentification Sufficient to Protect Health Privacy in Research? American Journal of Bioethics 10 (9):3-11.
Rebecca Tsosie (2007). Cultural Challenges to Biotechnology: Native American Genetic Resources and the Concept of Cultural Harm. Journal of Law, Medicine & Ethics 35 (3):396-411.
Daniel Hausman (2008). Protecting Groups From Genetic Research. Bioethics 22 (3):157–165.
Ilhan Ilkilic & Norbert W. Paul (2009). Ethical Aspects of Genome Diversity Research: Genome Research Into Cultural Diversity or Cultural Diversity in Genome Research? [REVIEW] Medicine, Health Care and Philosophy 12 (1):25-34.
Joan L. McGregor (2007). Population Genomics and Research Ethics with Socially Identifable Groups. Journal of Law, Medicine & Ethics 35 (3):356-370.
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