The initiative aims to collect electronic health records and DNA samples from at least one million Americans. Any person 18 or older is eligible to participate. Researchers hope the donated data will help them better understand diseases and develop more personalized treatments.
This new effort is well-intentioned. But it could put donors' privacy at risk.
Whether donating samples to the federal government or sending in a cheek swab to a private testing outfit like 23andMe, there's no risk-free way to share personal genetic data. Before parting with their DNA, citizens should understand their privacy rights and know how that data will be used.
The NIH's recent announcement comes amid a boom in consumer genetic testing. Along with 23andMe, companies like AncestryDNA and Orig3n let customers discover their ancestral origins and learn which diseases run in their family. One firm, Vinome, even recommends wines based on DNA test results.