Mind the Gap: Complications in returning data to study participants

People who participate in genetic research increasingly tell researchers that they want all of their genetic data back. But many of these participants do not have the data management infrastructure or analytical tools to interpret this information. And while third party companies eagerly offer to interpret results, they are unregulated and may offer incomplete or faulty information.
Three institute faculty members – Dana Crawford, PhD, Jessica Cooke Bailey, PhD, MS, and Farren Briggs, PhD, ScM – recently authored a review published in Human Genetics about the complexities of returning whole genome research data. They caution that researchers looking to increase diversity in their cohorts may find that it is frequently the people in target demographics they most want to include who lack the resources to interpret returned data.
Our colleagues caution their peers to mind this gap as they consider strategies to return whole genome data to research participants. Read the paper here.

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Paula Darte

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