TY - JOUR
T1 - Engaged genomic science produces better and fairer outcomes
T2 - an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation
AU - Murtagh, Madeleine J.
AU - Machirori, Mavis
AU - Gaff, Clara L
AU - Blell, Mwenza T
AU - de Vries, Jantina
AU - Doerr, Megan
AU - Dove, Edward S
AU - Duncanson, Audrey
AU - Hastings Ward, Jillian
AU - Hendricks-Sturrup, Rachele
AU - Ho, Calvin W L
AU - Johns, Amber
AU - Joly, Yann
AU - Kato, Kazuto
AU - Katsui, Keiko
AU - Kumuthini, Judit
AU - Maleady-Crowe, Fiona
AU - Middleton, Anna
AU - Milne, Richard
AU - Minion, Joel T
AU - Matshaba, Mogomotsi
AU - Mulrine, Stephanie
AU - Patch, Christine
AU - Ryan, Rosalyn
AU - Viney, William
N1 - Funding information: This work was supported by METADAC (Managing Ethico-social, Technical and Administrative issues in Data Access), funded by the UK Medical Research Council (MRC) [MR/N01104X/1], Economic and Social Research Council (ESRC) [ES/S008349/1], and Wellcome [206270]; and, EUCAN-connect, a federated FAIR platform enabling large-scale analysis of high-value cohort data connecting Europe and Canada in personalized health, funded by European Union's Horizon 2020 research and innovation programme under grant agreement No 824989.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
PY - 2021/11/15
Y1 - 2021/11/15
N2 - 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, and Yet there is a paucity of international guidance on how to engage publics, patients and participants in genomics. To support meaningful and effective engagement and involvement we developed an . The is intended to support all those working in genomics research, medicine, and healthcare to deliberatively consider approaches to participant, patient and public engagement and involvement in their work. Through a series of questions, the prompts new ways of thinking about the aims and purposes of engagement, and support reflection on the strengths, limitations, likely outcomes and impacts of choosing different approaches to engagement. To guide genomics activities, we describe four themes and associated questions for deliberative reflection: (i) fairness; (ii) context; (iii) heterogeneity, and (iv) recognising tensions and conflict. The four key components in the provide a framework to assist those involved in genomics to reflect on decisions they make for their initiatives, including the strategies selected, the participant, patient and public stakeholders engaged, and the anticipated goals. is one step in an actively evolving process of building genomics research and implementation cultures which foster responsible leadership and are attentive to objectives which increase equality, diversity and inclusion in participation and outcomes. [Abstract copyright: Copyright: © 2021 Murtagh MJ et al.]
AB - 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, and Yet there is a paucity of international guidance on how to engage publics, patients and participants in genomics. To support meaningful and effective engagement and involvement we developed an . The is intended to support all those working in genomics research, medicine, and healthcare to deliberatively consider approaches to participant, patient and public engagement and involvement in their work. Through a series of questions, the prompts new ways of thinking about the aims and purposes of engagement, and support reflection on the strengths, limitations, likely outcomes and impacts of choosing different approaches to engagement. To guide genomics activities, we describe four themes and associated questions for deliberative reflection: (i) fairness; (ii) context; (iii) heterogeneity, and (iv) recognising tensions and conflict. The four key components in the provide a framework to assist those involved in genomics to reflect on decisions they make for their initiatives, including the strategies selected, the participant, patient and public stakeholders engaged, and the anticipated goals. is one step in an actively evolving process of building genomics research and implementation cultures which foster responsible leadership and are attentive to objectives which increase equality, diversity and inclusion in participation and outcomes. [Abstract copyright: Copyright: © 2021 Murtagh MJ et al.]
U2 - 10.12688/wellcomeopenres.17233.1
DO - 10.12688/wellcomeopenres.17233.1
M3 - Letter
C2 - 35592835
SN - 2398-502X
VL - 6
JO - Wellcome Open Research
JF - Wellcome Open Research
M1 - 311
ER -