Short Wave A Call For Equity In Genomics Research
Nov 12, 2020
Keolu Fox, a genome scientist and professor at UC San Diego, advocates for equitable practices in genomics. In a compelling discussion, Fox highlights the lack of representation in genomic studies, particularly for Indigenous communities, and emphasizes the importance of data sovereignty. He also confronts past ethical breaches, such as those involving the Havasupai tribe, stressing the need for consent and respect in research. The conversation explores benefit-sharing models to ensure that contributions from minoritized communities lead to tangible advantages, reshaping the future of healthcare.
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Lack of Polynesian Representation
- Keolu Fox noticed a lack of Polynesian participants in a genomics study.
- This sparked his advocacy for greater inclusion of minoritized communities.
Indigenous Data Sovereignty
- Indigenous data sovereignty is crucial.
- Control, protection, and access to data should be prioritized to empower communities.
Havasupai Tribe Case
- Researchers studied diabetes in the Havasupai tribe but misused their DNA.
- This breach of trust led to a moratorium on genetic research by many tribes.