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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


    Murtagh, Madeleine J., Machirori, Mavis, Gaff, Clara L., Blell, Mwenza T., de Vries, Jantina, Doerr, Megan, Dove, Edward, Duncanson, Audrey, Hastings Ward, Jillian, Hendricks-Sturrup, Rachele, Ho, Calvin W. L., Johns, Amber, Joly, Yann, Kato, Kazuto, Katsui, Keiko, Kumuthini, Judit, Maleady-Crowe, Fiona, Middleton, Anna, Milne, Richard, Minion, Joel T., Matshaba, Mogomotsi, Mulrine, Stephanie, Patch, Christine, Ryan, Rosalyn and Viney, William (2021) 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. Wellcome Open Research, 6 (311). pp. 1-13. ISSN 2398-502X

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    Abstract

    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, Equitable and Responsible. 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 Engagement Framework for involving and engaging participants, patients and publics in genomics research and health implementation . The Engagement Framework 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 Engagement Framework 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 Engagement 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. The Engagement Framework 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.
    Item Type: Article
    Keywords: Engagement and involvement; Genomics; Trust, Equality, Diversity and Inclusion; Fairness; Reciprocity; Collaboration; Global; Quality;
    Academic Unit: Assisting Living & Learning,ALL institute
    Faculty of Social Sciences > Law
    Item ID: 19897
    Identification Number: 10.12688/wellcomeopenres.17233.1
    Depositing User: Edward Dove
    Date Deposited: 27 May 2025 11:40
    Journal or Publication Title: Wellcome Open Research
    Publisher: Taylor and Francis
    Refereed: Yes
    Related URLs:
    URI: https://mural.maynoothuniversity.ie/id/eprint/19897
    Use Licence: This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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