The GA4GH Regulatory and Ethics Work Stream (REWS) at 10: An Interdisciplinary, Participative Approach to International Policy Development in Genomics

Yann Joly, Edward Dove, Bartha Maria Knoppers and Dianne Nicol
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Yann Joly: McGill University
Edward Dove: University of Edinburgh
Bartha Maria Knoppers: McGill University
Dianne Nicol: University of Tasmania

A chapter in The Law and Ethics of Data Sharing in Health Sciences, 2024, pp 13-32 from Springer

Abstract: Abstract The Global Alliance for Genomics and Health (GA4GH)GA4GH is an international not-for-profit organization dedicated to the development of standards and policies to expand the use of genomic data within a human rights framework, improving health for everyone. The GA4GHGA4GH benefits from the participation of more than 500 leading organizations in healthcare, patient advocacy, research and ethicsEthics, government, life science, and information technology. This chapter charts the key accomplishments of the Regulatory and Ethics Work Stream (REWS) of the GA4GH. The REWS is a founding Work Stream of the GA4GHGA4GH responsible for the landmark Framework for Responsible Sharing of Genomic and Health-Related Data (2014/19). On the organization’s tenth anniversary, the authors highlight what, in their unique perspective as present or former leaders of the REWS, they consider to be its major contributions to interdisciplinary, participative, and international policy developments in genomics. Considerations for future REWS objectives and outputs are presented in closing.

Keywords: Data governance; Data sharing; GA4GH; Genomic policy; Genomic research (search for similar items in EconPapers)
Date: 2024
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DOI: 10.1007/978-981-99-6540-3_2

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