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


McWhirter, R and Eckstein, L and Chalmers, D and Critchley, C and Nielsen, J and Otlowski, M and Nicol, D, A scenario-based methodology for analyzing the ethical, legal, and social issues in genomic data sharing, Journal of Empirical Research on Human Research Ethics, 15, (4) pp. 355-364. ISSN 1556-2654 (2020) [Refereed Article]

Copyright Statement

Copyright The Author(s) 2020

DOI: doi:10.1177/1556264620920460


Sharing of genomic and associated data is essential to clinical practice and biomedical research, and is increasingly encouraged by journals and funding bodies. Grappling with the range of legal and ethical issues raised by genomic data sharing presents a significant challenge, given the diversity of practices: from defined sharing of individual patient data, to broad-scale public sharing of research data, to uploading of direct-to-consumer test data by community members. Most commentary to date 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 prototypical scenarios that capture the diversity of current genomic data sharing practices, which allows legal and ethical analysis of key issues at a granular level. The specificity of this approach provides a strong foundation for developing useful and relevant regulatory recommendations.

Item Details

Item Type:Refereed Article
Keywords:genomics, data sharing, ethics, law, ELSI
Research Division:Law and Legal Studies
Research Group:Law in context
Research Field:Law and society and socio-legal research
Objective Division:Law, Politics and Community Services
Objective Group:Justice and the law
Objective Field:Law reform
UTAS Author:McWhirter, R (Dr Rebekah McWhirter)
UTAS Author:Eckstein, L (Dr Lisa Eckstein)
UTAS Author:Chalmers, D (Professor Don Chalmers)
UTAS Author:Critchley, C (Associate Professor Christine Critchley)
UTAS Author:Nielsen, J (Associate Professor Jane Nielsen)
UTAS Author:Otlowski, M (Professor Margaret Otlowski)
UTAS Author:Nicol, D (Professor Dianne Nicol)
ID Code:140874
Year Published:2020
Deposited By:Law
Deposited On:2020-09-14
Last Modified:2021-04-28

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