How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community
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 a...
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| Format: | Article |
| Language: | English |
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BMC
2023-02-01
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| Series: | BMC Medical Ethics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12910-022-00879-5 |
| _version_ | 1828035061868396544 |
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| author | Josephine Borthwick Natalia Evertsz Bridget Pratt |
| author_facet | Josephine Borthwick Natalia Evertsz Bridget Pratt |
| author_sort | Josephine Borthwick |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-10T15:42:27Z |
| format | Article |
| id | doaj.art-c7199a5f3c5c4072ac7a5ba3ed70dfa3 |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-04-10T15:42:27Z |
| publishDate | 2023-02-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-c7199a5f3c5c4072ac7a5ba3ed70dfa32023-02-12T12:22:00ZengBMCBMC Medical Ethics1472-69392023-02-0124111510.1186/s12910-022-00879-5How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research communityJosephine Borthwick0Natalia Evertsz1Bridget Pratt2Royal Australian College of General PractitionersRoyal Melbourne HospitalQueensland Bioethics Centre, Australian Catholic UniversityAbstract 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.https://doi.org/10.1186/s12910-022-00879-5EthicsPriority-settingEngagementParticipationPatient and public involvementBiomedical research |
| spellingShingle | Josephine Borthwick Natalia Evertsz Bridget Pratt How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community BMC Medical Ethics Ethics Priority-setting Engagement Participation Patient and public involvement Biomedical research |
| title | How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community |
| title_full | How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community |
| title_fullStr | How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community |
| title_full_unstemmed | How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community |
| title_short | How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community |
| title_sort | how should communities be meaningfully engaged if at all when setting priorities for biomedical research perspectives from the biomedical research community |
| topic | Ethics Priority-setting Engagement Participation Patient and public involvement Biomedical research |
| url | https://doi.org/10.1186/s12910-022-00879-5 |
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