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 [version 1; peer review: 2 approved]
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 a...
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| Format: | Article |
| Language: | English |
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Wellcome
2021-11-01
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| Series: | Wellcome Open Research |
| Subjects: | |
| Online Access: | https://wellcomeopenresearch.org/articles/6-311/v1 |
| _version_ | 1828213844042842112 |
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| author | Joel T. Minion Richard Milne Stephanie Mulrine Mogomotsi Matshaba Rosalyn Ryan Christine Patch Fiona Maleady-Crowe Jantina de Vries Judit Kumuthini Anna Middleton William Viney Madeleine J. Murtagh Mavis Machirori Mwenza T. Blell Clara L. Gaff Edward S. Dove Megan Doerr Jillian Hastings Ward Audrey Duncanson Calvin W. L. Ho Rachele Hendricks-Sturrup Yann Joly Amber Johns Keiko Katsui Kazuto Kato |
| author_facet | Joel T. Minion Richard Milne Stephanie Mulrine Mogomotsi Matshaba Rosalyn Ryan Christine Patch Fiona Maleady-Crowe Jantina de Vries Judit Kumuthini Anna Middleton William Viney Madeleine J. Murtagh Mavis Machirori Mwenza T. Blell Clara L. Gaff Edward S. Dove Megan Doerr Jillian Hastings Ward Audrey Duncanson Calvin W. L. Ho Rachele Hendricks-Sturrup Yann Joly Amber Johns Keiko Katsui Kazuto Kato |
| author_sort | Joel T. Minion |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-12T14:56:05Z |
| format | Article |
| id | doaj.art-6b9eba0f6536406383a0c3efdf12bea4 |
| institution | Directory Open Access Journal |
| issn | 2398-502X |
| language | English |
| last_indexed | 2024-04-12T14:56:05Z |
| publishDate | 2021-11-01 |
| publisher | Wellcome |
| record_format | Article |
| series | Wellcome Open Research |
| spelling | doaj.art-6b9eba0f6536406383a0c3efdf12bea42022-12-22T03:28:14ZengWellcomeWellcome Open Research2398-502X2021-11-01619047Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation [version 1; peer review: 2 approved]Joel T. Minion0https://orcid.org/0000-0002-2105-3211Richard Milne1https://orcid.org/0000-0002-8770-2384Stephanie Mulrine2Mogomotsi Matshaba3https://orcid.org/0000-0002-6441-1218Rosalyn Ryan4Christine Patch5https://orcid.org/0000-0002-4191-0663Fiona Maleady-Crowe6Jantina de Vries7https://orcid.org/0000-0001-7192-2633Judit Kumuthini8Anna Middleton9https://orcid.org/0000-0003-3103-8098William Viney10https://orcid.org/0000-0003-1693-7191Madeleine J. Murtagh11https://orcid.org/0000-0003-1073-6161Mavis Machirori12Mwenza T. Blell13Clara L. Gaff14Edward S. Dove15https://orcid.org/0000-0003-4095-3677Megan Doerr16Jillian Hastings Ward17Audrey Duncanson18Calvin W. L. Ho19https://orcid.org/0000-0002-8328-1308Rachele Hendricks-Sturrup20Yann Joly21https://orcid.org/0000-0002-8775-2322Amber Johns22Keiko Katsui23Kazuto Kato24https://orcid.org/0000-0001-9006-9551University of Calgary, Calgary, CanadaWellcome Connecting Science, Cambridge, UKNorthumbria University, Newcastle upon Tyne, UKH3ABioNet/H3Africa, Cape Town, South AfricaTibco.com, Palo Alto, USAGenomics England, London, UKGenomics England, London, UKUniversity of Cape Town, Cape Town, South AfricaUniversity of Western Cape, Cape Town, South AfricaWellcome Connecting Science, Cambridge, UKGoldsmiths, University of London, London, UKSchool of Social and Political Sciences, University of Glasgow, Glasgow, UKAda Lovelace Institute, London, UKNewcastle University, UK, Newcastle Upon Tyne, UKUniversity of Melbourne, Melbourne, AustraliaUniversity of Edinburgh, Edinburgh, UKSage Bionetworks, Seattle, USAParticipant Panel, Genomics England, London, UKWellcome, London, UKUniversity of Hong Kong, Hong Kong, Hong KongDuke- Margolis Center for Health Policy, Washington, USACentre of Genomics and Policy, McGill University, Montreal, CanadaInternational Cancer Genome Consortium, Glasgow, UKJapan Agency for Medical Research and Development, Tokyo, JapanGEM-Japan, Tokyo, JapanGenomic 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.https://wellcomeopenresearch.org/articles/6-311/v1Engagement and involvement; Genomics; Trust Equality Diversity and Inclusion; Fairness; Reciprocity; Collaboration; Global; Quality. eng |
| spellingShingle | Joel T. Minion Richard Milne Stephanie Mulrine Mogomotsi Matshaba Rosalyn Ryan Christine Patch Fiona Maleady-Crowe Jantina de Vries Judit Kumuthini Anna Middleton William Viney Madeleine J. Murtagh Mavis Machirori Mwenza T. Blell Clara L. Gaff Edward S. Dove Megan Doerr Jillian Hastings Ward Audrey Duncanson Calvin W. L. Ho Rachele Hendricks-Sturrup Yann Joly Amber Johns Keiko Katsui Kazuto Kato 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 [version 1; peer review: 2 approved] Wellcome Open Research Engagement and involvement; Genomics; Trust Equality Diversity and Inclusion; Fairness; Reciprocity; Collaboration; Global; Quality. eng |
| title | 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 [version 1; peer review: 2 approved] |
| title_full | 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 [version 1; peer review: 2 approved] |
| title_fullStr | 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 [version 1; peer review: 2 approved] |
| title_full_unstemmed | 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 [version 1; peer review: 2 approved] |
| title_short | 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 [version 1; peer review: 2 approved] |
| title_sort | 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 version 1 peer review 2 approved |
| topic | Engagement and involvement; Genomics; Trust Equality Diversity and Inclusion; Fairness; Reciprocity; Collaboration; Global; Quality. eng |
| url | https://wellcomeopenresearch.org/articles/6-311/v1 |
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