The important role of community engagement and equal collaboration in population genetic research: Lessons from Bornean contemporary hunter-gatherers
Authors/Creators
Description
Abstract - Population and medical genetics can provide valuable information about human history and health. However, research involving Indigenous and vulnerable communities often raises ethical issues and runs the risk of being extractive and harmful. Here we argue that meaningful community engagement in genetic research involving communities is both a moral and scientific obligation and present practical guidance based on empirical work. Drawing on a long-term project with the Bornean hunter-gatherer community, the Punan Batu, we describe an engagement workflow that combines community consultation, co-design, dynamic consent, respectful sample and data collections, return of results, and impactful benefit sharing. These activities supported scientifically useful outcomes and produced targeted tangible community benefits, such as health services, recognition of the community’s traditional and legal status, environmental awards, and ongoing support for their land rights. We place the Bornean hunter-gatherer case in comparative perspective with cases of past harm, research fatigue, and contemporary partnership models in genomic research. We show how proper engagement reduces the risk of misinterpretation, data misuse, and public criticism, and how it can be resourced, monitored, and rewarded. Finally, we provide recommendations for stakeholders, i.e., funders, IRBs, institutions, and researchers, to integrate engagement into grant review, ethics assessment, and project design. Respectful engagement takes time and may slow conventional short-term academic progress, but it strengthens scientific validity, equity, and long-term impact – a tradeoff that all stakeholders should acknowledge and support.
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Kusuma_etal_CommEngagementGenetics_preprint260223.pdf
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Additional details
Funding
- Wellcome Trust
- Comparative functional genomics and microbiomes in lifestyle transition of Borneo indigenous hunter-gatherer communities 222992/Z/21/Z
- European Commission
- MOBILE - Movement networks and genetic evolution among tropical hunter-gatherers of island Southeast Asia 950610
- UK Research and Innovation
- Pathways through change: Seeking positive outcomes during subsistence transitions of traditional hunter-gatherer communities in Indonesia G128998 A33490