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Better governance of human genomic data: Clarifying the issues and balancing competing values

Research output: Contribution to journalArticle

Kieran O'Doherty, Mahsa Shabani, Edward S. Dove, Heidi Beate Bentzen, Pascal Borry, Michael Burgess, Don Chalmers, Jantina de Vries, Lisa Eckstein, Stephanie Fullerton, Eric Juengst, Kazuto Kato, Jane Kaye, Bartha Maria Knoppers, Barbara Koenig, Spero Manson, Kimberlyn McGrail, Amy L. McGuire, Eric M. Meslin, Dianne Nicol & 4 more Barbara Prainsack, Sharon F. Terry, Adrian Thorogood, Wylie Burke

Original languageEnglish
JournalAmerican Journal of Human Genetics

King's Authors


Recent years have seen a dramatic increase in the collection, storage, and curation of human genomic data for biomedical research. To optimize the knowledge and benefits deriving from genomic data, managers of data repositories and funding organizations have increasingly sought to enable wide access to these resources. However, expanding access to human genomic data also intensifies a number of well-articulated ethical, legal and social concerns about the potential risks of these data collection efforts.
Genomic data repositories and consortia adopt governance procedures to address the dual objectives of enabling wide access while protecting against possible harms. There are ongoing debates in the scientific community about the merits and limitations of different governance approaches to achieve these twin aims. What is currently missing is a comprehensive assessment of the ethically salient issues to be addressed. Part of the challenge is that different kinds of repositories and consortia may require different forms of governance. The purpose of this article, therefore, is to identify the functions that governance of genomic data should fulfil, as the basis for the design, implementation, and evaluation of governance frameworks for particular cases. We do not advocate for or against particular governance frameworks. Instead, we identify five key functions of “good governance” and examine three areas where tensions may arise between achieving competing functions and where trade-offs need to be considered when specifying policies. We illustrate these issues with the governance frameworks of six large-scale international genomic projects.

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