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

In: The Law and Ethics of Data Sharing in Health Sciences

Author

Listed:
  • Yann Joly

    (McGill University)

  • Edward Dove

    (University of Edinburgh)

  • Bartha Maria Knoppers

    (McGill University)

  • Dianne Nicol

    (University of Tasmania)

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.

Suggested Citation

  • Yann Joly & Edward Dove & Bartha Maria Knoppers & Dianne Nicol, 2024. "The GA4GH Regulatory and Ethics Work Stream (REWS) at 10: An Interdisciplinary, Participative Approach to International Policy Development in Genomics," Perspectives in Law, Business and Innovation, in: Marcelo Corrales Compagnucci & Timo Minssen & Mark Fenwick & Mateo Aboy & Kathleen Liddell (ed.), The Law and Ethics of Data Sharing in Health Sciences, pages 13-32, Springer.
    • Handle: RePEc:spr:perchp:978-981-99-6540-3_2
    DOI: 10.1007/978-981-99-6540-3_2
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