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A proposal for an international Code of Conduct for data sharing in genomics
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0001-6691-7549
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0002-4053-8468
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.ORCID iD: 0000-0002-5621-8485
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2023 (English)In: Developing World Bioethics, ISSN 1471-8731, E-ISSN 1471-8847, Vol. 23, no 4, p. 344-357Article in journal (Refereed) Published
Abstract [en]

As genomic research becomes commonplace across the world, there is an increased need to coordinate practices among researchers, especially with regard to data sharing. One such way is an international code of conduct. In September 2020, an expert panel consisting of representatives from various fields convened to discuss a draft proposal formed via a synthesis of existing professional codes and other recommendations. This article presents an overview and analysis of the main issues related to international genomic research that were discussed by the expert panel, and the results of the discussion and follow up responses by the experts. As a result, the article presents as an annex a proposal for an international code of conduct for data sharing in genomics that is meant to establish best practices.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023. Vol. 23, no 4, p. 344-357
Keywords [en]
biobanking, cloud computing, code of conduct, data protection, genomics, international data transfers, privacy
National Category
Medical Genetics and Genomics Medical Ethics
Identifiers
URN: urn:nbn:se:uu:diva-487139DOI: 10.1111/dewb.12381ISI: 000870811900001OAI: oai:DiVA.org:uu-487139DiVA, id: diva2:1705937
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EU, Horizon 2020, 741716Available from: 2022-10-24 Created: 2022-10-24 Last updated: 2025-02-10Bibliographically approved

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Matar, AmalHansson, MatsSlokenberga, Santa

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Matar, AmalHansson, MatsSlokenberga, SantaChassang, GauthierTzortzatou, OlgaCardone, AntonellaBeauvais, Michael
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Centre for Research Ethics and BioethicsDepartment of Law
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Developing World Bioethics
Medical Genetics and GenomicsMedical Ethics

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