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参与式基因组科学能产生更优且更公平的成果:一个关于让参与者、患者和公众参与基因组研究及医疗保健实施的参与框架。

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.

作者信息

Murtagh Madeleine J, Machirori Mavis, Gaff Clara L, Blell Mwenza T, de Vries Jantina, Doerr Megan, Dove Edward S, 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, Viney William

机构信息

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

Ada Lovelace Institute, London, UK.

出版信息

Wellcome Open Res. 2021 Nov 15;6:311. doi: 10.12688/wellcomeopenres.17233.1. eCollection 2021.

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, 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.

摘要

基因组科学在医疗保健提供方面日益占据核心地位。生成并应用可靠的基因组学知识是一项复杂的工作,没有任何一个个人、专业、学科或群体能掌握所有答案。让不同的利益相关者参与进来,有助于使社会和科学的利益、理解及观点保持一致,并有望带来更优质的科学成果和更公平的结果。在此背景下,我们主张采用更具公平性、可及性、互操作性、可重复性及伦理性的(F.A.I.R.E.R.)数据和数据使用方式。然而,关于如何让公众、患者和参与者参与基因组学研究,国际上缺乏相关指导。为了支持有意义且有效的参与,我们开发了一个工具。该工具旨在支持所有从事基因组学研究、医学和医疗保健工作的人员,审慎地思考让参与者、患者和公众参与其工作的方法。通过一系列问题,该工具促使人们以新的方式思考参与的目标和目的,并支持反思选择不同参与方式的优势、局限性、可能的结果及影响。为指导基因组学活动,我们描述了四个主题以及相关的审慎反思问题:(i)公平性;(ii)背景;(iii)异质性;(iv)认识到紧张关系和冲突。该工具中的四个关键要素提供了一个框架,以协助参与基因组学研究的人员反思他们为自己的项目所做的决策,包括所选择的策略、所涉及的参与者、患者和公众利益相关者,以及预期目标。这是构建基因组学研究和实施文化这一积极发展过程中的一步,这种文化能够培养负责任的领导力,并关注那些在参与及成果方面促进平等、多样性和包容性的目标。

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本文引用的文献

1
What does engagement mean to participants in longitudinal cohort studies? A qualitative study.
BMC Med Ethics. 2021 Jun 24;22(1):77. doi: 10.1186/s12910-021-00648-w.
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Sci Data. 2021 Apr 16;8(1):108. doi: 10.1038/s41597-021-00892-0.
4
The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?
Res Involv Engagem. 2020 Oct 27;6:63. doi: 10.1186/s40900-020-00239-w. eCollection 2020.
6
Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?
Am J Hum Genet. 2020 Oct 1;107(4):743-752. doi: 10.1016/j.ajhg.2020.08.023. Epub 2020 Sep 17.
7
The reported impact of public involvement in biobanks: A scoping review.
Health Expect. 2020 Aug;23(4):759-788. doi: 10.1111/hex.13067. Epub 2020 May 6.
8
Public Involvement in Global Genomics Research: A Scoping Review.
Front Public Health. 2019 Apr 9;7:79. doi: 10.3389/fpubh.2019.00079. eCollection 2019.
9
Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.
Health Expect. 2019 Aug;22(4):785-801. doi: 10.1111/hex.12888. Epub 2019 Apr 22.

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