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Lookup NU author(s): Professor Madeleine Murtagh
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© Copyright 2017, Mary Ann Liebert, Inc. 2017. Discussions regarding responsible genomic data sharing often center around ethical and legal issues such as the consent, privacy, and confidentiality of individuals, families, and communities. To ensure the ethical grounds of genomic data sharing, oversight by both research ethics and Data Access Committees (DACs) across the research lifecycle is warranted. In this article, we review these oversight practices and argue that they reveal a compelling need to clarify the scope of ethical considerations by oversight bodies and to delineate core elements such as "objectionable" data uses. Ethical oversight of genomic data sharing would be considerably improved if the relevant ethical considerations by research ethics and DACs were coordinated. We therefore suggest several mechanisms to achieve greater clarification of ethical considerations by these committees, as well as greater communication and coordination between both to ensure robust and sustained ethical oversight of genomic data sharing.
Author(s): Shabani M, Dove ES, Murtagh M, Knoppers BM, Borry P
Publication type: Review
Publication status: Published
Journal: Biopreservation and Biobanking
Online publication date: 24/08/2017
Acceptance date: 02/04/2016
ISSN (print): 1947-5535
ISSN (electronic): 1947-5543
Publisher: Mary Ann Liebert Inc.