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Genomes2People to Survey Customers of DTC Firms to Assess Understanding of Risk Reports


Originally published June 3.

By Turna Ray

BOSTON — A new project will soon set out to gauge how customers' expectations before they receive their genomic scan results from direct-to-consumer testing firms square with their understanding of the genomic risk data provided in the reports.

At the Consumer Genomics Conference here this week, Robert Green, professor of neurology, genetics, and epidemiology at Boston University, said the National Institutes of Health is currently reviewing this project, called Genomes2People, for funding.

If funded, Genomes2People stands to be the first effort to survey people's attitudes before and after receiving their DNA results from DTC genomics firms, Green said.

As genomic information becomes increasingly integrated into people's healthcare, “we need to know which types of genomic information is helpful, harmful, and neutral, and that's what we're trying to find out” with this survey, Green told Pharmacogenomics Reporter.

According to Green, 23andMe and Navigenics have agreed to participate in the Genomes2People project. Both firms will allow researchers to interview their customers before and after they receive their DNA information reports to provide an independent analysis of how people process genomic information about their health risks and responses to drugs.

As part of a separate grant proposal, Green and his team of researchers plan to also ask similar questions of people who receive their whole-genome sequencing data. As part of this effort, his research team has curated a compendium of variants and is working to create tiers of information that patients should receive based on their clinical data and family history.

Green is involved in various studies investigating how genomic information is received by people. He is the principal investigator of the REVEAL Study (Risk Evaluation and Education for Alzheimer’s disease), which is a multi-center effort funded by the National Human Genome Research Institute and the National Institute on Aging to develop genetic risk assessment strategies for individuals at risk for Alzheimer's disease.

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