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Chunk #47 — (3) Negotiating Genomics in the Public Square16 — (b) Negotiating the Driving Hypotheses of Translational Genomic Research

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What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
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Genomic research has encountered and intensified social and political uncertainties for some minority groups that are underrepresented in biomedical research. Addressing this challenge was repeatedly marked as urgent by presenters because of the scientific, conceptual, and political uncertainties that can get eclipsed in the process of moving too quickly from one sphere to the next. One ELSI Congress panel detailed the creation of an international Indigenous Genomics Alliance (IGA), which facilitates connections between indigenous groups worldwide and the development of research frameworks that respect indigenous values and self-determination [G-4]. Organizations like the IGA serve an important function in the wake of past misunderstandings and exploitations of indigenous groups by genomics researchers, and echo a wider call for community partnerships in genomics research that can facilitate mutually beneficial research relationships.