Four weeks ago, I listened to a genetics lecturer tell a medical school class that 23andMe, a much-heralded biotech startup established to provide people with an interpretation of their own genetic information, had been largely shut down. “Which is good,” she added with satisfaction, “because people shouldn’t be able to get their genetic information without counselling and support.” But now 23andMe is back – mostly.
23andMe collects raw data through a saliva test kit. The FDA, citing concern about the potential consequences of erroneous test results, ruled two years ago that they couldn’t market that kit as a way to obtain information on genes or traits. Since then, you’ve still been able to access your raw test results as strings of SNPs, but you've had to do any interpreting yourself: the site has mainly offered information about ancestry. Still, 23andMe seems to be doing just fine: a month ago, in October, it raised $US 115 m in Series E financing, and, starting this month, it's making health information available to US customers again.
I'm not denying that the lecturer who advocated counselling before disclosure had a point. I'm a customer of 23andMe, and I remember clicking to see which variant of the APOE gene I had. The E4 allele is associated with a much higher risk of Alzheimer’s, and, though the disease doesn't run in my family, I was mildly curious. I clicked. Are you sure? the website asked me. And my mild curiosity spiked briefly into terror. But I chose to click again. Whatever you would have decided, wouldn't you at least have wanted the choice?
My parents wrote my genetic code, and I'm glad 23andMe is returning so I can read it. I don't think using 23 and me to read what's written by your genes is really any different from using a mirror to see your face. Both experiences can freak you out. Both experiences can send you to the doctor. But, fundamentally, both experiences are about seeing who you are. There was something perverse about taking that away.