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Genetics company receives $1.4 million NIH grant
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The NIH has granted a total of $1,367,504 to 23andMe, a personal genetic testing company, for a 2-year project to enhance the company’s online database and research engine. The project will make access to aggregate, summary data available to outside researchers.
Catherine Afarian, spokesperson for 23andMe, told HemOnc Today the company wants “the best and brightest minds in the world to have access” to their data. By granting access to outside experts, research that may have taken years to complete can be conducted quickly in real-time.
“23andMe is building a platform to connect researchers and consumers that will enable discoveries to happen faster,” Anne Wojcicki, co-founder and CEO of 23andMe, said in a press release. “This grant from the NIH recognizes the ability of 23andMe to create a unique, web-based platform that engages consumers and enables researchers from around the world to make genetic discoveries.”
Lisa D. Brooks, PhD, director of the Genetic Variation Program in the National Human Genome Research Institute at the NIH, said in an interview with HemOnc Today that the competitive grant was awarded to 23andMe to expand the use of existing resources and allow researchers to begin making connections between genotypes and medical and other conditions. She said to do this type of research, a large dataset is needed, so making use of one that is already available seemed sensible.
When asked if the money would give more “bang for the buck,” she said, “For the buck they’ve already spent, this will expand the bang. It’s a very good dataset — we might as well make it broadly available.”
Afarian said the company has collected genomic information on over 700,000 customers, 80% of whom have consented to participate in de-identified research, and many of those customers have provided over 200 million survey responses related to health conditions and “a broad range of topics,” according to Afarian.
She said one challenge will be to keep user data anonymous to protect the privacy of its customers who have consented to research, but that 23andMe follows institutional review board protocols. While the data will be available for research, it will not be through open access. The grant was awarded to help develop the infrastructure to make access possible, and to help the company and its scientists evaluate the best methods for making the data accessible.
The grant was awarded less than a year after the company was forced to suspend its medical testing after the FDA requested formal approval of the service, citing concerns that the testing methods are unverified and that consumers might consider the results to be on par with medical advice. -- By Shirley Pulawski