Literature DB >> 31080178

Sharing with Strangers: Governance Models for Borderless Genomic Research in a Territorial World.

Eric T Juengst, Eric M Meslin.   

Abstract

One of the practices that has defined the ethos of genomic research to date is a commitment to open and rapid sharing of genomic data and resources. As genomic research evolves into an international enterprise, this commitment is being challenged by the need to respect the interests of those it involves and implicates, from individual scientists and subjects to institutions and nations. In this essay, we first describe the types of claims that different stakeholders are making about the disposition of genomic data and samples. Next, we illustrate the complexities of these multiple claims by applying them to the case of one ongoing international genomics initiative, the H3Africa Consortium. Finally, in the light of these complexities, we conclude by comparing and contrasting four governance models for future international data-sharing policy and practices in genomics.

Mesh:

Year:  2019        PMID: 31080178     DOI: 10.1353/ken.2019.0000

Source DB:  PubMed          Journal:  Kennedy Inst Ethics J        ISSN: 1054-6863


  2 in total

1.  Toward better governance of human genomic data.

Authors:  Kieran C O'Doherty; Mahsa Shabani; Edward S Dove; Heidi Beate Bentzen; Pascal Borry; Michael M Burgess; Don Chalmers; Jantina De Vries; Lisa Eckstein; Stephanie M Fullerton; Eric Juengst; Kazuto Kato; Jane Kaye; Bartha Maria Knoppers; Barbara A Koenig; Spero M Manson; Kimberlyn M McGrail; Amy L McGuire; Eric M Meslin; Dianne Nicol; Barbara Prainsack; Sharon F Terry; Adrian Thorogood; Wylie Burke
Journal:  Nat Genet       Date:  2021-01       Impact factor: 41.307

2.  Towards equitable genomics governance in Africa: Guiding principles from theories of global health governance and the African moral theory of Ubuntu.

Authors:  Nchangwi Syntia Munung; Jantina de Vries; Bridget Pratt
Journal:  Bioethics       Date:  2022-01-18       Impact factor: 2.512

  2 in total

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