2026/02/20 by Pradiptajati Kusuma, IRENE GALLEGO ROMERO, Herawati Sudoyo +3 · 1 voice
Biochemistry, Genetics and Molecular Biology · Medicine · #Race, Genetics, and Society #Ethics in Clinical Research #Forensic and Genetic Research
paper · doi:10.5281/zenodo.18717480
openalex publication_date 2026/02/20 · openalex created_date 2026/02/22 · openalex updated_date 2026/07/13
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.