How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community
Journal article
Borthwick, Josephine, Evertsz, Natalia and Pratt, Bridget. (2023). How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community. BMC Medical Ethics. 24, pp. 1-15. https://doi.org/10.1186/s12910-022-00879-5
Authors | Borthwick, Josephine, Evertsz, Natalia and Pratt, Bridget |
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Abstract | Background: There is now rising consensus that community engagement is ethically and scientifically essential for all types of health research. Yet debate continues about the moral aims, methods and appropriate timing in the research cycle for community engagement to occur, and whether the answer should vary between different types of health research. Co-design and collaborative partnership approaches that involve engagement during priority-setting, for example, are common in many forms of applied health research but are not regular practice in biomedical research. In this study, we empirically examine the normative question: should communities be engaged when setting priorities for biomedical research projects, and, if so, how and for what purpose? Methods: We conducted in-depth interviews with 31 members of the biomedical research community from the UK, Australia, and African countries who had engaged communities in their work. Interview data were thematically analysed. Results: Our study shows that biomedical researchers and community engagement experts strongly support engagement in biomedical research priority-setting, except under certain circumstances where it may be harmful to communities. However, they gave two distinct responses on what ethical purpose it should serve—either empowerment or instrumental goals—and their perspectives on how it should achieve those goals also varied. Three engagement approaches were suggested: community-initiated, synergistic, and consultative. Pre-engagement essentials and barriers to meaningful engagement in biomedical research priority-setting are also reported. Conclusions: This study offers initial evidence that meaningful engagement in priority-setting should potentially be defined slightly differently for biomedical research relative to certain types of applied health research and that engagement practice in biomedical research should not be dominated by instrumental goals and approaches, as is presently the case. |
Keywords | Ethics; Priority-setting; Engagement; Participation; Patient and public involvement; Biomedical research; Genomics research |
Year | 01 Jan 2023 |
Journal | BMC Medical Ethics |
Journal citation | 24, pp. 1-15 |
Publisher | BioMed Central |
ISSN | 1472-6939 |
Digital Object Identifier (DOI) | https://doi.org/10.1186/s12910-022-00879-5 |
Web address (URL) | https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-022-00879-5 |
Open access | Published as ‘gold’ (paid) open access |
Research or scholarly | Research |
Page range | 1-15 |
Publisher's version | License File Access Level Open |
Output status | Published |
Publication dates | |
Online | 06 Feb 2023 |
Publication process dates | |
Accepted | 19 Dec 2022 |
Deposited | 20 May 2024 |
ARC Funded Research | This output has been funded, wholly or partially, under the Australian Research Council Act 2001 |
Grant ID | DE170100414 |
Additional information | © The Author(s) 2023. |
This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. | |
BP was supported by an Australian Research Council Discovery Early Career Researcher Award (DE170100414). | |
Place of publication | United Kingdom |
https://acuresearchbank.acu.edu.au/item/90896/how-should-communities-be-meaningfully-engaged-if-at-all-when-setting-priorities-for-biomedical-research-perspectives-from-the-biomedical-research-community
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OA_Pratt_2023_How_should_communities_be_meaningfully_engaged.pdf | |
License: CC BY 4.0 | |
File access level: Open |
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