23andMe’s Business Woes Raise Genetic Data Privacy Concerns: Ethicist

This transcript has been edited for clarity. 

Hi. I’m Art Caplan. I’m at the Division of Medical Ethics at the NYU Grossman School of Medicine. 

Amazingly, one of the giants of biotech — a superstar company, 23andMe — has gone from being a valuable asset in the billions and billions of dollars, all the way down to almost completely bankrupt. It looks like there’s going to be a fire sale of 23andMe assets. 

You may remember this company. They’re the ones who had endless advertising campaigns, particularly around Christmas and the holiday season, to find out about your ancestors. You get a DNA kit, send us your saliva, we’ll tell you a lot about your ancestry. 

It was touted as a great stocking stuffer, Christmas present, or Hanukkah gift. Oprah was raving about it on her show in terms of what she learned. Many people were all over social media. It drove a tremendous demand for this company’s services — and by the way, there are other companies out there that also jumped into the game.

23andMe, for reasons I don’t totally understand, has lost a large amount of business. It is not really getting customers sending information in. I’ll confess that I was an early critic of this company. I thought the idea that you could send saliva, and they could do DNA testing and then keep your sample, was ethically fraught.

It didn’t make sense to me that you could find out your ancestry from a genetic test because much of the information needed, including where your ancestors were living and what groups they were mingling with 200 years ago; we just don’t know. 

Genes do not sort out by cultural categories like Lithuanian or Panamanian. There’s no Costa Rican gene. Therefore, getting DNA information that’s being correlated with cultural, sociologic, sometimes biased, and discriminatory categories, I wasn’t convinced you were going to find out much that was real about your ancestry. 

I always thought the company was collecting the DNA because it wanted to sell it for research. The whole idea of ancestry testing and finding out about your past was almost a bait and switch: We’ll give you this cool information if you give us your DNA. 

Now, the company did say that they were going to protect your privacy if you sent in your DNA, they analyzed it, and kept the information and the sample, but I never trusted that either. That’s turning out to be a problem now. Why? 

If 23andMe really goes bankrupt and someone comes in and buys assets, then what’s going to happen is their promises of confidentiality go out the window. The buyer is not bound to follow what 23andMe said. They can share data, and given the fact that DNA analysis is even better than it was 10 years ago when all this collection started, they might be able to identify people.

What would I tell someone who used this service? Write to them now before they disappear and say, “Pull my data and remove my information. I withdraw my permission.” There may be time to do that, and I would do it. 

I would also be sensitive to the fact that, for other competitive companies, their privacy protections are no better than what 23andMe had. The science for what they’re doing about ancestry is no better than what 23andMe had. I’m not sure this is still the best holiday gift. 

I’m Art Caplan, at the Division of Medical Ethics at NYU Grossman School of Medicine. Thanks for watching.