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Ethical, Legal, and Social Implications of Polygenic Risk Scores in Indigenous Communities: Consent, Governance, and Trust

Kakembo Aisha Annet

Faculty of Education, Kampala International University, Uganda

ABSTRACT

Polygenic risk scores (PRS) are emerging tools in genomic medicine that estimate an individual’s genetic susceptibility to complex diseases by aggregating the effects of multiple genetic variants. While PRS hold promise for advancing precision medicine, their application in Indigenous communities raises significant ethical, legal, and social concerns. This paper examines the implications of PRS within Indigenous contexts, focusing on informed consent, governance frameworks, trust-building, and data sovereignty. It highlights the limitations of PRS derived predominantly from European ancestry datasets, which undermine their predictive validity and exacerbate existing health inequities for Indigenous populations. The study further explores the importance of culturally appropriate consent processes that prioritize collective decision-making and respect Indigenous worldviews. It evaluates emerging Indigenous-led governance models and accountability mechanisms designed to safeguard community interests and ensure equitable participation in research. Additionally, the paper discusses legal considerations surrounding Indigenous data sovereignty, ownership, and cross-border data governance. Despite increasing global attention, significant gaps remain in empirical evidence and methodological approaches tailored to Indigenous populations. The paper concludes by advocating for inclusive, community-driven research practices, strengthened governance structures, and policy reforms that align genomic innovation with Indigenous rights, values, and self-determination.

Keywords: Polygenic Risk Scores (PRS), Indigenous Communities, Informed Consent, Data Sovereignty, and Genomic Ethics.

CITE AS: Kakembo Aisha Annet (2026). Ethical, Legal, and Social Implications of Polygenic Risk Scores in Indigenous Communities: Consent, Governance, and Trust. Research Output Journal of Education 6(1):1-5. https://doi.org/10.59298/ROJE/2026/611500

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