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Why early participant engagement is now a top priority in genetic disease research

January 18, 2023

The DNA of these so-called ‘genetic superheroes’ may contain clues about how to treat severe disease. By studying their natural resilience and using it to design new therapies, it could help so many people.

However, the Resilience Project’s scientists had used genomic data originally collected for other studies and, due to limitations in the original studies’ informed consent policies and a lack of infrastructure to recontact participants, none of the 13 individuals could be contacted with follow-up questions or requests.

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