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23AndMe changes policies again: no longer automatically tells you about long-lost relatives

Changes announced after DNA results inadvertently destroyed a customer's marriage

The 23AndMe genetic-testing company is changing its business model for the second time in less than a year.

Last November, the FDA temporarily ordered the company shut down on the grounds that the DNA testing kit was actually a “medical device,” since its early advertising campaigns offered customers the opportunity to learn not just about their ancestry, but also which diseases or medical conditions they might be genetically predisposed to suffering.

As our colleague Truman Lewis noted last November:

The FDA's stated concern with all of this is not that we'll all waste $99 and a lot of time poring over results that may or may not mean anything but rather that we will be driven to drastic measures because of the findings.

As an example, the agency said, "if the BRCA-related risk assessment for breast or ovarian cancer reports a false positive, it could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions."

So in order to continue doing business, 23AndMe had to stop offering genetic information about one's health, but could still operate if it marketed itself as a way to learn your ancestry. (The FDA still doesn't think you can be trusted to handle the knowledge that your ancestors were unusually prone to certain types of cancer, but you are allowed to know where in the world your ancestors lived.) 23AndMe would also tell you how many living genetic relatives you have — at least among the people who had 23AndMe test their DNA.

The gift of divorce

This might have remained the 23AndMe status quo indefinitely, except that on Sept. 9, an American biologist writing under the pseudonym “George Doe” published an article on Vox.com called, “With genetic testing, I gave my parents the gift of divorce.”

How did he do that? Entirely by accident:

Last year, I taught a course about the genome. For one of the lessons, I demonstrated the process of acquiring a tissue sample — in this case saliva — and sending it off to 23andMe to look at a million letters in my genome. 23andMe analyzes them, and spits out a report telling you things about yourself at the genetic level. Then you get the awesome bonus of learning about your ancestry: finding out which parts came from Europe, Africa, Asia. … Because I was so excited about it, I got two 23andMe kits for my mom and dad as gifts. It's a lot more fun when you can incorporate your family because you can trace not just the chromosomes but individual alleles on the chromosome so you don't just see them, but where they came from. … I found out I don't have any genetic predisposition to any kind of cancer, which was a great relief to me. But I also discovered through the 23andMe close relative finder program that I have a half brother, Thomas.

Uh-oh. Turned out that, before getting married, Doe's father had fathered another child which he never even knew about. Doe's story offers no details about his parents' marriage, let alone his parents' respective premarital histories, but he did say this:

At first, I was thinking this is the coolest genetics story, my own personal genetics story. I wasn't particularly upset about it initially, until the rest of the family found out. Their reaction was different. Years of repressed memories and emotions uncorked and resulted in tumultuous times that have torn my nuclear family apart. My parents divorced. No one is talking to my dad. We're not anywhere close to being healed yet and I don't know how long it will take to put the pieces back together.

After this discovery was made, I went back to 23andMe and talked to them. I said, "I'm not sure all your customers realize that when they participate in your family finder program, they're participating in what are essentially really advanced paternity tests." People find out that their parents aren't who they think they are. … The person I spoke to didn't really have a response. I don't want to say she was aloof. She just said "that's interesting."

Unknown ancestors

But Vox, in a Sept. 16 followup to Doe's story, reported that 23AndMe will be changing its policies once again: henceforth, customers will have to “opt in” to learn about unknown genetic relatives in 23AndMe's database. 23AndMe CEO Anne Wojcicki posted a public announcement on the 23AndMe community forum, which said in part:

We made a change from what we promised and I want to apologize. We promised that the roughly 350,000 customers that had not consented to see Close Relatives in our DNA Relatives feature would be automatically opted in at the end of a 30 day notification period. … I do not think it was ever the right call to promise that we would automatically opt-in those customers. Core to our philosophy is customer choice and empowerment through data. The Close Relatives features can potentially give a customer life changing information, like the existence of an unknown sibling or the knowledge that a relative is not biologically related to them. Customers need to make their own deliberate and informed decision if they want this information ….

So henceforth, 23AndMe won't let you know about long-lost relatives unless you actually consent to it (though it's uncertain how much that would've helped someone like Doe's father, who never suspected he had a child with one of his pre-marriage girlfriends, and therefore would not likely have thought “Hmm, yes, I'd better opt out of the relative match so my secret child stays secret”).

CEO Wojcicki's announcement included another promise which might sound astonishing, comping from a company whose business entails collecting and reading people's DNA: “23andMe is hiring a Chief Privacy Officer and that too will help us avoid these types of mistakes in the future.”

It's not astonishing that a DNA collection company would have an executive charged with overseeing people's privacy; what's astonishing is the realization that 23AndMe went so long without one.

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