MPH’s Clayton discusses home genetic test errors and the ethics behind it
23andMe, the only direct-to-consumer genetic test authorized by the FDA to offer reports on genetic risk, claims to have more than 2 million customers. Only a fraction of these customers upload their genetic report to Promethease, whose founders said in a past interview that the site generated up to 500 reports a day. And there is no data on how many customers take action based on what they find. Promethease is a third-party DNA analysis company that links a person’s DNA report to published research on their particular genes, summarizing the potential medical implications.
Greg Lennon, a spokesman for Promethease, called the company a “literature retrieval service” and emphasized that it doesn’t generate or edit any data that consumers upload from 23andMe.
This kind of “caveat emptor” language is par for the course for companies that want to minimize their liability. But companies don’t sufficiently warn consumers ― patients, really ― about the expensive and emotional “wild goose chase” that these test results can trigger, says Dr. Ellen Wright Clayton, a genomics and ethics researcher at Vanderbilt University.