23andMe (and You, and Everyone Else)
The revolution in home DNA testing is giving consumers important, possibly life-changing information. It’s also building a gigantic database that could lead to medical breakthroughs. But how will you deal with upsetting news? What if your privacy is compromised? And are you prepared to have your DNA monetized? We speak with Anne Wojcicki, founder and CEO of 23andMe.
In 2018, police in Sacramento, California, arrested a man who’d been eluding them for decades. The Golden State Killer, as he’d been known, was responsible for more than a dozen murders and 50 rapes. Detectives had uploaded a DNA sample from the suspect to an open source website called GEDmatch. The site lets anyone upload raw DNA data from home genetics-testing companies like 23andMe and Ancestry.com; at least 24 of the suspect’s relatives were included in the GEDmatch database. By cross-referencing the suspect’s DNA data against Census data and cemetery records, the police were able to confirm they had the right guy.
A bunch of civilians looking to fill out their family trees had inadvertently crowdsourced the capture of an elusive murderer.
On this week’s episode of Freakonomics Radio, we speak with Anne Wojcicki, the CEO of one of these DNA databases, 23andMe. In exchange for a saliva sample and $99, 23andMe provides a wealth of information about your ancestry; for $199, the company provides an additional report on your health characteristics and risks. Wojcicki, who co-founded the company in 2006, had previously worked as a health care analyst focused on biotech firms. She realized, she says, that the U.S. health care system — and its investors — were really good at monetizing illness, but there was no business model in place to reward consumers for being healthier.
Today, 23andMe is cleared by the FDA to provide risk reports on common health conditions, such as breast cancer and Type 2 diabetes. With 5 million customers who’ve bought the health reports, 23andMe has the world’s largest database of genetic information for medical research. Last year, the British pharmaceutical firm GlaxoSmithKline (GSK) made a $300 million investment in 23andMe in exchange for the rights to use its genetic data for drug discovery. In addition to GSK, 23andMe has partnered with or accepted investments from Pfizer, Genentech, and Procter & Gamble — as well as several non-industry partners, including universities and institutes.
In our interview, we asked Wojcicki about privacy in the age of the DNA revolution, the company’s forays into drug development, and the surprising secrets that DNA testing is unearthing for some families.
Stephen Dubner: By pursuing a vision that doesn’t “monetize illness,” you started a company that’s now valued at a few billion dollars. The irony is that you have successfully monetized the curiosity about or the pursuit of wellness.
Anne Wojcicki: I actually disagree. One thing that drives me crazy in health care is that there’s always this assumption that you and I — the individuals, the laypeople, the non-PhDs, the non-MDs — that we are incapable of taking care of ourselves. And I think people, when they’re sick, or they’re given the opportunity, they actually want to step up. They just need that advice; they need the information. You know, the majority of people who are thinking about getting pregnant don’t necessarily get carrier-status screening before the pregnancy. But if I walk into my doctor and say, “Hey, I’m thinking of having children, and I’m a carrier for cystic fibrosis, and my partner is a carrier for this mutation,” that’s a helpful dialogue.
And do you feel that physicians and medical providers are taking this information in the spirit that you intend it?
I think we have a long ways to go here. We’ve put a fair amount of resources in the past couple of years into outreach to key providers. The next phase of this company is specifically about helping people take action with this genetic information and helping the medical community value consumers coming with their genetic information.
A new method you’re using of detecting disease risk, called a polygenic risk score, works best for people of the same ethnic background as those who provided the data that goes into the risk algorithm. I know your database is pretty European-heavy, and some people think it’s way too white. As I’m sure you well know, there’s a really long and terrible history in this country of African Americans being exploited by the medical system. And the data show that African Americans today are still much less likely to participate in the health care system. Are we seeing that same reluctance here — that the idea of putting their DNA into a database like this is too frightening? And if that’s true, what are we missing out on by not having the sample be as representative as we might like?
I think that’s a great question. First, 20%, roughly, of our customers are non-European. So, while that’s a small percent, on our size and scale, it is the largest such community out there, so we’re actually really able to do a lot of research on different communities. That said, I’m absolutely empathetic to some of these communities that have been poorly treated. Secondly, we’re doing a lot to try and improve relationships there. And so we have a global genetic diversity project where we are recruiting individuals from specific countries like Tanzania, Cameroon, Chad, where we’re offering free testing for people. And part of the reason why we do that is the more people who come in from those communities, then we can develop the reports to be representative of all populations.
I am looking at a 2016 British Medical Journal report about whether genetic testing leads people to alter their lifestyles or behaviors. And it finds, basically, it doesn’t. It says, “Expectations have been high that giving people information about their genetic risk will empower them to change their behavior, to eat more healthily, or to stop smoking, for example, but we have found no evidence that this is the case.” So, I’m curious about your overall confidence that the information you provide will actually be a net gain.
If you’re really that down on humanity that you don’t think people can change their behaviors and there’s no way of getting them to change their behaviors, it’s a really sad outlook. I believe that there is a way to do that, and we just haven’t figured out the right way. I look at a lot of these cognitive behavior tools that are online, that are working — like the Diabetes Prevention Program that started in the early 2000s, and that was better than most drug therapies out there. So, there are ways to get people to change their behavior.
When we asked listeners of our show what they most wanted to hear about when it comes to home DNA testing, the majority of responses dealt with privacy. Another concern — frankly, it’s profit. So, the idea is, “Wait a minute, I’m paying 23andMe for a kit and the test and the results. But then I read that 23andMe uses my genetic data to make commercial deals with pharmaceutical companies. And then I start to think, well, okay, I opted in — I understand that, and I really like the idea of advancing science—but shouldn’t you be paying me for that instead of me paying you, because my data’s worth a lot more to you than maybe it is to me.”
The most important thing I have found from customers is that they want to see the results. They’re not interested in a $50 check. I think, secondly, we’re not a profitable company. We are doing all kinds of research deals. We have our own drug discovery team. We are also investing a lot in researching prevention. That said, we’re really committed — and I think this is something we think about quite a bit in the long term — when we do have a successful therapeutic on the market, or I do have a successful way of preventing a condition, how do I give back to my customers?
That’s 10 years out. So, at this stage, the most important thing I can do is give people a sense of pride in what they have done and say, “Here are the papers that you’ve been a part of. Here’s the contribution that you’ve had.” And I think that as we develop therapeutics, when that theoretical cash flow can come, we’ll have to think about what’s the right way for our customers to feel like they’ve benefited.
Has 23andMe ever been substantially hacked?
No. I’m really proud of the team. You know, we had a lot of our core engineers in the early days came from banking. And I love saying, “Look, your DNA is beautiful, but would I rather see your DNA or your bank account?” There’s a lot to learn from the banking industry.
The thing that we’ve really tried to pioneer is sharing options. So, for instance, right now, in HIPAA, it’s really super restrictive, and I would say it’s harmful. A lot of the ways HIPAA functions, it prevents any kind of beneficial sharing. And what 23andMe has tried to pioneer is saying, “I’m giving you options.” The thing people don’t understand about privacy is that what privacy means is choice — I want the choice of saying I’ve opted in, and I want the choice of opting out.
Now, let’s say I want to opt into all those things, but I’m also concerned that my data — nonaggregated, nonanonymized data — may somehow end up in the hands of a health care company or an insurer or employer, present or future, or a future partner or spouse.
We explicitly say we never share your individual-level data without your explicit consent. So unless you have explicitly told us we can share your individual-level data, we are never going to.
Now, I understand you learned at least one surprising thing in the familial DNA testing for your own family.
Yeah, my mom called me one day, and she’s like, “There’s this guy on 23andMe, and it looks like we’re pretty closely related to him.” She has a brother who, you know, never had children. It turns out that he did have a child, and he was given up for adoption, and this person was raised as an only child and then suddenly logs into 23andMe. And lo and behold: There’s a lot of us on 23andMe. And so, you know, it’s been really lovely. There’s a lot of things I can see — similarities with my uncle, similarities with the family.
So you’ve developed a relationship, it sounds like.
For sure, we see him quite a bit. To me, one of the most exciting things that 23andMe is doing is redefining family, identifying people who were part of the family that for one reason or another have, you know, been disconnected. As a child of Jewish descent, lots of family left Russia in the Holocaust, and it’s amazing to be able to reconnect people. There’s something about your genetics that is potentially more powerful than looking in the mirror.
I’m curious why you think that is, because I think who raises you and the environment you’re in, that is so much more powerful or meaningful than the biological determination. I’m curious if you have any philosophicalish thoughts about why that pull is so strong and deep?
Well, I think a couple of things. There’s something about your roots. You’re connected to these people. There’s a story. And for some people, that story is important, and for some people, it’s just not. And I think that we are in a moment in society where a lot of people don’t feel grounded, and there’s something about looking at your DNA and finding a trace in the past and where it’s been. And those roots and the connections and understanding why — why are you the way you are today?
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