February 23, 2024

Genetic testing backfires

You cannot possibly improve on this headline: “With genetic testing, I gave my parents the gift of divorce”.

You cannot possibly improve on this headline: “With genetic testing, I gave my parents the gift of divorce”. But it is strictly accurate, unlike most sensational headlines. The online magazine Vox earlier this month featured a first-person essay by George Doe, a pseudonym for an American biologist who used the results of tests from the company 23andMe as part of an undergraduate genetics curriculum.

One day he gave the test to his mother and father as a gift. The results turned out to be devastating for his family. They linked George to a hitherto unknown half-brother, sired by his father. When the family found out, there was an eruption of repressed emotions. His parents divorced and no one is talking to his father. “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,” he says.

Although the company markets its test as a way to “Build your family tree and enhance your experience with relatives”, the ramifications can be immense. George Doe laments that the 23andMe test is really a very advanced paternity test.

“I’m really devastated at the outcome. I wrestle with these emotions. I love my family. This is nothing I ever would have wished. My dream would be to introduce Thomas to dad, to incorporate a new family tradition, to merge families. We all get to broaden our horizons and live happily ever after. At least right now, that’s not what happened. I still hold out hope that in time we can resolve things. But I also worry that as these transitions happen there may have been some permanent emotional damage that may not be able to be undone.

“23andMe’s way of protecting people is by giving users the chance to click that box to opt into the relative finder program. I think they’re trying to protect people from themselves. They believe in the power of information and of learning about yourself. Some people can’t handle the information. Some people don’t even know they can’t handle it.

“When you check that [close relatives] box it should have a bunch of stars and bells and whistles around it. Because there are plenty of people who click boxes. Nobody reads their iTunes agreement. That’s how I feel about the family finder thing: you just check all the boxes, just keep doing it, and never put a whole lot of thought into the possibilities.

“I would want a warning saying, ‘Check this box and FYI: people discover their parents aren’t their parents, they have siblings they didn’t know about. If you check this box, these are the things you’ll find.’ And I’m the one with my PhD. I understand how this works. But I didn’t think through all of the practical implications, in part because I thought, ‘This wouldn’t happen to me.’”

Vox’s report hit 23andMe hard. The company reversed its move to make identification of close relatives an opt-out decision. From now on customers will have to make a clear decision to see whether they have relatives. 23andMe has also hired a Chief Privacy Officer to deal with such issues. 

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