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A scenario-based methodology for analyzing the ethical, legal, and social issues in genomic data sharing

McWhirter, R ORCID: 0000-0002-9409-8074, Eckstein, L ORCID: 0000-0002-7161-7521, Chalmers, D ORCID: 0000-0002-7925-8818, Critchley, C, Nielsen, J ORCID: 0000-0002-3005-0047, Otlowski, M ORCID: 0000-0003-4707-4325 and Nicol, D ORCID: 0000-0002-6553-2839 2020 , 'A scenario-based methodology for analyzing the ethical, legal, and social issues in genomic data sharing' , Journal of Empirical Research on Human Research Ethics, vol. 15, no. 4 , pp. 355-364 , doi: 10.1177/1556264620920460.

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Abstract

Sharing of genomic and associated data is essential to clinical practice and biomedical research, and is increasinglyencouraged by journals and funding bodies. Grappling with the range of legal and ethical issues raised by genomic data sharingpresents a significant challenge, given the diversity of practices: from defined sharing of individual patient data, to broad-scalepublic sharing of research data, to uploading of direct-to-consumer test data by community members. Most commentary todate has discussed these issues in broad terms, but the debate can only progress if we engage with more granularity,grounded in jurisdictional and contextual specifics. We developed an empirical approach, creating a set of prototypicalscenarios that capture the diversity of current genomic data sharing practices, which allows legal and ethical analysis of keyissues at a granular level. The specificity of this approach provides a strong foundation for developing useful and relevantregulatory recommendations.

Item Type: Article
Authors/Creators:McWhirter, R and Eckstein, L and Chalmers, D and Critchley, C and Nielsen, J and Otlowski, M and Nicol, D
Keywords: genomics, data sharing, ethics, law, ELSI
Journal or Publication Title: Journal of Empirical Research on Human Research Ethics
Publisher: Sage Publications
ISSN: 1556-2654
DOI / ID Number: 10.1177/1556264620920460
Copyright Information:

Copyright The Author(s) 2020

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