Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation.

Diversity and Inclusion; Fairness; Reciprocity; Collaboration; Global; Quality. Engagement and involvement; Genomics; Trust Equality

Journal

Wellcome open research
ISSN: 2398-502X
Titre abrégé: Wellcome Open Res
Pays: England
ID NLM: 101696457

Informations de publication

Date de publication:
2021
Historique:
accepted: 13 10 2021
entrez: 20 5 2022
pubmed: 21 5 2022
medline: 21 5 2022
Statut: epublish

Résumé

Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers.  Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, understandings and perspectives and promises better science and fairer outcomes. In this context we argue for F.A.I.R.E.R. data and data use that is Findable, Accessible, Interoperable, Reproducible,

Identifiants

pubmed: 35592835
doi: 10.12688/wellcomeopenres.17233.1
pmc: PMC9086526
doi:

Types de publication

Journal Article

Langues

eng

Pagination

311

Subventions

Organisme : Medical Research Council
ID : MR/N01104X/1
Pays : United Kingdom

Informations de copyright

Copyright: © 2021 Murtagh MJ et al.

Déclaration de conflit d'intérêts

Competing interests: MJM is a former co-lead and ESD and YJ are current co-leads of the Regulatory and Ethics Work Stream of GA4GH. MJM is a member of Wellcome’s Independent Review Panel.

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Auteurs

Madeleine J Murtagh (MJ)

School of Social and Political Sciences, University of Glasgow, Glasgow, UK.

Mavis Machirori (M)

Ada Lovelace Institute, London, UK.

Clara L Gaff (CL)

University of Melbourne, Melbourne, Australia.
Melbourne Genomics Health Alliance, Melbourne, Australia.

Mwenza T Blell (MT)

Newcastle University, UK, Newcastle Upon Tyne, UK.

Jantina de Vries (J)

University of Cape Town, Cape Town, South Africa.

Megan Doerr (M)

Sage Bionetworks, Seattle, USA.

Edward S Dove (ES)

University of Edinburgh, Edinburgh, UK.

Audrey Duncanson (A)

Wellcome, London, UK.

Jillian Hastings Ward (J)

Participant Panel, Genomics England, London, UK.

Rachele Hendricks-Sturrup (R)

Duke- Margolis Center for Health Policy, Washington, USA.

Calvin W L Ho (CWL)

University of Hong Kong, Hong Kong, Hong Kong.

Amber Johns (A)

International Cancer Genome Consortium, Glasgow, UK.
Garvan Institute of Medical Research, Sydney, Australia.

Yann Joly (Y)

Centre of Genomics and Policy, McGill University, Montreal, Canada.

Kazuto Kato (K)

GEM-Japan, Tokyo, Japan.
Osaka University, Suita, Japan.

Keiko Katsui (K)

Japan Agency for Medical Research and Development, Tokyo, Japan.

Judit Kumuthini (J)

University of Western Cape, Cape Town, South Africa.
H3ABioNet/H3Africa, Cape Town, South Africa.

Fiona Maleady-Crowe (F)

Genomics England, London, UK.

Anna Middleton (A)

Wellcome Connecting Science, Cambridge, UK.

Richard Milne (R)

Wellcome Connecting Science, Cambridge, UK.

Joel T Minion (JT)

University of Calgary, Calgary, Canada.

Mogomotsi Matshaba (M)

H3ABioNet/H3Africa, Cape Town, South Africa.
Botswana-Baylor Children's Clinical Centre of Excellence, Gabrorone, Botswana.

Stephanie Mulrine (S)

Northumbria University, Newcastle upon Tyne, UK.

Christine Patch (C)

Genomics England, London, UK.
Wellcome Connecting Science, Cambridge, UK.

Rosalyn Ryan (R)

Tibco.com, Palo Alto, USA.

William Viney (W)

Goldsmiths, University of London, London, UK.

Classifications MeSH