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Published on: August 12, 2019
Bridging the divide between genomic science and indigenous peoples
Bette Jacobs1, Jason Roffenbender, Jeff Collmann
1O'Neill Health Law Institute, Georgetown University.
Summary
Genomic research offers health benefits but poses risks for indigenous and developing communities due to historical exploitation. New guidelines for community engagement and consent are crucial for equitable participation in genomic science.
Area of Science:
- Genomics and Global Health
- Bioethics and Indigenous Research
Background:
- Genomic science aims to understand genetic factors in health and disease globally.
- Indigenous peoples and developing nations face health disparities, influencing their participation in genomic research.
- Historical unethical practices in biomedical research create mistrust and dilemmas for community involvement.
Purpose of the Study:
- To explore the promises and perils of genomic science for indigenous and developing communities.
- To address the ethical considerations and risks associated with participation in genomic research.
- To propose new approaches for equitable engagement between genomic researchers and communities.
Main Methods:
- Analysis of the ethical landscape of genomic research in vulnerable populations.
- Review of historical precedents in biomedical research involving indigenous and developing nations.
- Identification and evaluation of emerging community-centered engagement strategies.
Main Results:
- Genomic research presents both opportunities for improved health and risks of exploitation for indigenous and developing communities.
- Community participation decisions are complex, balancing potential health benefits against historical mistrust.
- New engagement models are emerging, focusing on collaboration and mutual benefit.
Conclusions:
- Equitable participation in genomic science requires addressing historical inequities and developing trust.
- Key strategies include local community consultation, complex consent negotiation, and bidirectional training.
- Innovative translational research is needed to bridge the gap and ensure genomic science benefits all peoples.
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