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DOI: 10.12688/wellcomeopenres.17233.1
¤ OpenAccess: Gold
This work has “Gold” OA status. This means it is published in an Open Access journal that is indexed by the DOAJ.

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

Madeleine J. Murtagh,Mavis Machirori,Clara Gaff,Mwenza Blell,Jantina de Vries,Megan Doerr,Edward S. Dove,Audrey Duncanson,Jillian Ward,Rachele Hendricks‐Sturrup,Calvin Wai-Loon Ho,Amber L. Johns,Yann Joly,Kazuto Kato,Keiko Katsui,Judit Kumuthini,F. Maleady‐Crowe,Anna Middleton,Richard Milne,Joel Minion,Mogomotsi Matshaba,Stephanie Mulrine,Christine Patch,Rosalyn Ryan,William Viney

Context (archaeology)
Public engagement
Metagenomics
2021
<ns3:p>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, <ns3:italic>Equitable</ns3:italic> and <ns3:italic>Responsible. </ns3:italic>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 <ns3:italic>Engagement Framework for</ns3:italic><ns3:italic> involving and engaging participants, patients and publics in genomics research and health</ns3:italic><ns3:italic> implementation</ns3:italic>.</ns3:p><ns3:p> The <ns3:italic>Engagement Framework </ns3:italic>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 <ns3:italic>Engagement Framework</ns3:italic> prompts new ways of thinking about<ns3:italic> </ns3:italic>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.</ns3:p><ns3:p> The four key components in the <ns3:italic>Engagement </ns3:italic>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. <ns3:italic>The Engagement Framework</ns3:italic> 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.</ns3:p>
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    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” is a paper by Madeleine J. Murtagh Mavis Machirori Clara Gaff Mwenza Blell Jantina de Vries Megan Doerr Edward S. Dove Audrey Duncanson Jillian Ward Rachele Hendricks‐Sturrup Calvin Wai-Loon Ho Amber L. Johns Yann Joly Kazuto Kato Keiko Katsui Judit Kumuthini F. Maleady‐Crowe Anna Middleton Richard Milne Joel Minion Mogomotsi Matshaba Stephanie Mulrine Christine Patch Rosalyn Ryan William Viney published in 2021. It has an Open Access status of “gold”. You can read and download a PDF Full Text of this paper here.