A year and a half ago, I wrote about having our DNA analyzed by 23 and Me. It was a fascinating experience and we made some surprising discoveries. Among them, that I have a little Italian and Ashkenazi Jew DNA. I’m 2% Neanderthal, which is average. And Derek is a descendant of Alexander Hamilton.
Oprah was a fan of the site. It’s super simple. You send some spit and find out loads of things about yourself. More than 14 million people have done it. But the company has undergone some big changes and I don’t want that positive blog post to be my last word on it.
They had a major data breach where millions of customer passwords were stolen. They paid $30 million in compensation to make that story go away. (It didn’t go away.) The company’s stock lost 99% of its value. Then the entire board of directors resigned at once.
The Big Question
What happens to all of the DNA if 23 and Me shuts down or is sold? That’s what no one will say for sure. The CEO has said they’re working with major pharmaceutical companies to find medical breakthroughs. Apparently, 80% of users gave their consent for this kind of research on their genetic material. But what if it’s sold to an insurance company? Are people aware that their most private, personal information could potentially be used against them?
If you so choose, when you submit your spit you can allow the company to continuously analyze it when new testing becomes available. Occasionally, I’ve received an email letting me know that they’ve looked into something new. Once, it was how I metabolize caffeine. (Slowly, but my life experience already showed me that.) Another time, it was whether I was predisposed to dementia. (It says I’m not.) This is how they keep you coming back to the site because, let’s face it, there are no repeat purchases. DNA doesn’t change. The business model is one-and-done.
Family Ties
The most disappointing part has been the family matches. The site brings me people who are related by a little or a lot. I did exchange notes with the granddaughter of one of my Mom’s first cousins. I’d met the older woman only once but Mom talked about her here and there. We got a little caught up and that was it. Otherwise, a couple of relatives I reached out to have never responded. It’s clear that people set up a profile and then lose interest. Once they receive their report, what else is there to do? Even if you’re building your family tree there’s no guarantee that your relations will use this site.
23 and Me’s CEO promises that if you delete your data, your DNA also gets destroyed. That’s the route I’m going to take. I’m not worried about an insurance company denying me coverage because of something they find out. Nor do I think there’s anything creepy afoot. But it’s the principle of the thing. It just doesn’t seem secure anymore, if it ever was, and why take a chance? I’m not smart enough to know what could happen if my genetic fingerprint falls into unethical hands. So, I’ve deleted the “me” in 23 and Me and if you were to ask, I’d suggest you do the same.
Deleting your profile is strongly advised. Some Life Insurance companies when you apply for coverage do ask if you’ve ever had or participated in genetic testing and will ask permission for the results and if you say no? Insurers in recent years have been basing your premiums on your credit history, so adding genetic testing isn’t a far stretch.