23andMe (and You, and Everyone Else) (Ep. 378)
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 C.E.O. of 23andMe.
Listen and subscribe to our podcast at Apple Podcasts, Stitcher, or elsewhere. Below is a transcript of the episode, edited for readability. For more information on the people and ideas in the episode, see the links at the bottom of this post.
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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.
Whit JOHNSON: This morning, new details of the rigorous investigation that detectives say brought down the Golden State Killer, more than 40 years after his alleged killing spree began.
Detectives had uploaded a DNA sample from the suspect to an open-source website called GEDmatch. The site provides, in its words, “DNA and genealogical analysis tools for amateur and professional researchers and genealogists.”
JOHNSON: We’ve just learned from multiple law enforcement sources that investigators used genealogy websites to help link DeAngelo to what was previously the unknown mystery DNA of the attacker.
GEDmatch lets anyone upload raw DNA data from home-genetics testing companies like 23andMe and Ancestry.com. It turned out that at least 24 relatives of the suspect were included in the GEDmatch database. The police, by cross-referencing the suspect’s DNA data against Census data and cemetery records, were able to confirm that they had the right guy.
JOHNSON: Police say the 72-year-old appeared surprised when they swarmed his home Tuesday evening.
Kenneth CRAIG: More than 100 pages of heavily redacted court documents read like a real-life CSI , revealing that a DNA sample recovered this April sealed the case against him.
How remarkable is that? That a bunch of civilians just looking to fill out their family trees had inadvertently crowd-sourced the capture of a murderer. But not everybody saw it as remarkable in just that way.
Anne WOJCICKI: I’m Anne Wojcicki, and I am the co-founder and C.E.O. of 23andMe.
23andMe has become world-famous for their mail-in DNA spit kit. You send them some saliva and, for $99, they’ll send you an ancestry profile and for another hundred dollars, a lot of health information — from your purported risk of various diseases to whether you should be able to detect the smell of asparagus in your urine. But since the beginning, Wojcicki says she was hyper-sensitive about how and where the personal data of 23andMe customers would be used.
WOJCICKI: In our consent form, we specifically thought about, how do we make sure that we’re not set up for crime, and for the FBI to come and use this.
DUBNER: One story we read about recently was how the Chinese government has been using DNA testing, much of it driven by technology and data from the U.S., to enforce what some human-rights advocates see as discrimination against racial groups like the Uighurs. Does 23andMe think about, or participate in, some international regulatory structure to ensure that this kind of data is not used for discrimination, oppression, et cetera?
WOJCICKI: Since the early days of the company, there is a group called the Ethical Legal Social Community that has actively followed 23andMe, and what we’re doing, and what our consequences are. So what’s interesting is people often compare us to the tech world and what’s happening now. There’s a big difference, because there’s never really been an ethical, legal, social group following Google and Facebook and others. But we’ve always been hounded by this group. And, and frankly, I’m grateful to them now, because I think that we premeditated a lot of what’s coming in things like the Golden State Killer.
If you think the arrest of the Golden State Killer represents a revolutionary use of personal DNA — just wait: because the revolution is only just beginning.
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Anne Wojcicki’s own family tree is pretty impressive. She’s the youngest of three daughters born to Stanley Wojcicki, an emeritus professor of physics at Stanford; and Esther Wojcicki, a journalist and beloved educator who’s won many awards. Esther recently published a book called How to Raise Successful People. One of their daughters, Janet, is a globe-trotting anthropologist and epidemiologist. Here’s Anne again:
WOJCICKI: She’s living in Japan now. She does studies in Rwanda, in rural Alaska.
DUBNER: And then there’s YouTube. Come on, don’t leave out YouTube sister.
WOJCICKI: Oh, she’s interesting too. I love her too.
Susan Wojcicki, the oldest sister, is the C.E.O. of YouTube, which is owned by Google. She was Google’s first marketing manager, its 16th employee overall. But her Google connection predates her employment: when the company was just getting started, Susan Wojcicki rented out part of her house to Google founders Larry Page and Sergey Brin. The Google-Wojcicki link expanded when sister Anne Wojcicki, shortly after founding 23andMe, married Sergey Brin. They had two kids, and divorced eight years later, in 2015. Anne Wojcicki, who’s now 45 years old, went to college at Yale, where she majored in biology and played varsity ice hockey. After graduating, she went to work in finance, primarily as a healthcare analyst for investment funds. Her focus was on biotech firms.
WOJCICKI: Wall Street was my really in-depth look at the health care system and how it works. And I started to realize that if I was a healthy 100-year-old, if I was never diabetic, I never had heart disease, I never had, walking issues, I’m not generating money for the healthcare system. There’s not a money-making opportunity in saying, “I’m going to solve how to keep you healthy.”
Wojcicki realized that the U.S. healthcare system — and its investors — were really good at monetizing illness. What about wellness? Not so profitable.
WOJCICKI: The problem is that the payment system is set up that you pay for treatments of conditions, but you don’t pay for ongoing health. If I stay healthy, no one really cares except for me. The consumer voice was really not represented. And it’s a shame that there’s not really a business model in place to say, “I’m going to reward you for keeping you healthier.”
DUBNER: And then, I read that Larry Page, one of the co-founders of Google, told you that even though you were doing this, pretty interesting, good work on Wall Street, that you were really part of the problem and not the solution. How true is that story? Was that a really big push for you deciding, “Hey, I’m going to get out of this business of profiting from this misaligned healthcare system, and instead try to start a company that does something different?”
WOJCICKI: Well, by the end of my tenure on Wall Street, after 10 years, I was in this very cynical place of — my sister would give a talk, she does work on obesity, and she would give a talk about obesity and the coming crisis, and how it’s going to be detrimental to society. And I would give the corollary talk that’s like: “Obesity, the ultimate moneymaking opportunity.” And we’d say, “Oh, obesity in China.” “These people aren’t just going to get sick and die right away. It’s 20 years of heart disease, diabetes, this and that.” And people would look at me like I was evil, and I was like, “No, I’m just reflective of how the system thinks.”
I was becoming really cynical. Like, look, this system it is meant for making money off sick people. And it was at that point, I would brainstorm with people, like, what can we do? We need a revolution. So, I would complain a lot, and one day, Larry was tired of me complaining, and was just like — in his Larry way, was like, “You’re either part of the solution, or you’re part of the problem, and it sounds like you’re part of the problem right now.” And it wasn’t the only motivating factor, but it’s a good reminder.
In 2006, Wojcicki co-founded 23andMe with the biologist Linda Avey and the entrepreneur Paul Cusenza. It was one of the first direct-to-consumer personal genomics companies. Since then, a few dozen DNA-testing-kit services have come to market; the M.I.T. Technology Review predicts that by 2021, more than 100 million people will be part of commercial genetic databases. A lot of people are just in it for the family connections — that’s the main appeal of the biggest player, Ancestry.com. But 23andMe has, from the outset, also offered the option of a personalized health report. It’s a saliva test, remember, not a blood test. It doesn’t diagnose disease; instead, it purports to link your genetic makeup to potential risk for certain diseases and the likelihood of other traits.
With five million customers who’ve bought the health reports, 23andMe has the world’s largest database of genetic information for medical research. And that, as we’ll hear today, comes with a lot of complications. When 23andMe was starting out, their health reports were not approved by the F.D.A. Wojcicki didn’t think they needed the approval. But the F.D.A. disagreed.
WOJCICKI: In November of 2013, we got a warning letter from the F.D.A.
Federal law states that any kit intended to cure, mitigate, treat, prevent, or diagnose a disease is a “medical device” that needs to be declared safe by the F.D.A.
WOJCICKI: We did not believe at that time that we were a medical device. And to this day a lot of what we do is very different than traditional medical devices. So, it became abundantly clear with our warning letter, there’s no more debates, we are a medical device. And what we were asked to do was to stop returning health information. We could continue returning raw data, and we could continue returning ancestry information, but we had to stop interpreting the health information for our customers, and we had to go through an F.D.A. process.
DUBNER: And what was the response in your building, to that letter? That must have felt like a punch in the gut.
WOJCICKI: It was more, like, wow, well, the onus is really on us. We own the responsibility to prove to the F.D.A. that this is actually a responsible company and product. So we went through methodically, trying to go and get approvals for our past reports. And, it was hard work, but, if the F.D.A. wants data, wow, we’re good at generating data, so we’ll prove it. And frankly, I am grateful to the F.D.A. that when I buy a product, I have a high confidence that it’s safe. So, as much as I was upset about this, I’m also respectful of the position that they’re in, that they have a job to monitor public safety.
In 2017, the F.D.A. gave 23andMe permission to send their customers genetic risk reports for 10 ailments or conditions, including breast and ovarian cancer, celiac disease, late-onset Alzheimer’s disease, and Parkinson’s disease. Here’s what the agency said at the time: “These are the first direct-to-consumer tests authorized by the F.D.A. which may help to make decisions about lifestyle choices or to inform discussions with a healthcare professional.”
WOJCICKI: We’re really trying to make a constructive difference in the healthcare space. And I’m using all that information I had to empower the customer — empower all of us to take charge and make a difference and actually be healthy.
DUBNER: Right. So, by pursuing a vision that is about a solution, and that doesn’t monetize illness, you started a company that’s now valued somewhere around between $2 and $3 billion, is that about roughly right?
WOJCICKI: It’s the least of my worries. Valuations are always important, but to me the ultimate financial success, when I can point to like, “Hey, 20 million people didn’t die in their 40s because of me,” then I’ll feel like, yeah, that’s worth bragging about.
DUBNER: I mean, the irony though is that you have successfully monetized the — I don’t know exactly what to call it — the curiosity about, or the pursuit of, wellness and, and/or connection?
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 lay people, the non-Ph.D.’s, the non-M.D.’s — 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. 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 I 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. So we potentially fill in clues that wouldn’t have otherwise come up.
DUBNER: And do you feel that physicians and medical providers are taking this information in the spirit that you intend it?
WOJCICKI: We have a long way to go here. We’ve put a fair amount of resources, in the last couple of years, in terms of outreach to key providers. The next phase of this company is specifically about helping people take action with this genetic information, and also helping the medical community value consumers coming with their genetic information. The thing I’m most proud of is that we have shown that you can get this information on your own, truly direct-to-consumer, without a physician, and without a genetic counselor. And that’s a monumental step for the customer, for the individual. And the reality is the average person has less than 10 minutes with their doctor. This is an opportunity for people to educate themselves in a way that best suits them.
DUBNER: If I’m a doctor, or the A.M.A., hearing you say that, I shudder a little bit though, because most doctors I know and most literature I’ve read on it says that one of the biggest problems that the medical profession has now is people coming in with information that’s often incomplete or wrong. So, persuade me that you defend that position because it’s the right position, and not just because you’ve chosen for your firm to go the route of direct-to-consumer, rather than with physician or genetic-counseling contact.
WOJCICKI: Well, I think that the consumer today often doesn’t have a relationship with a primary-care provider. So, I do think that there is a responsibility for the consumer to get educated, to have information, to keep track of it. So as you spoke, you made the assumption, like, well, some of the information is incomplete or wrong — we just went through the F.D.A. process. We prove the information we have is valuable, and it’s correct.
There are a couple important caveats to consider here. Many other personal-genomics companies do require some sort of physician approval or genetic counseling, to ensure that customers don’t misinterpret their risk information or perhaps make poor decisions based on it. Also: even though a 23andMe risk report is definitively not a diagnosis, you can imagine how learning about a risk can carry some costs in addition to the benefits.
DUBNER: It sounds as though you believe in the upside of knowing as much as you can as early as you can, but I’m guessing you can also empathize with those people who think that, “Wow, just having that word in my head, ‘Parkinson’s’ or ‘Alzheimer’s,’ might exact a cost that might not allow me to live my life to the fullest.
WOJCICKI: This is where I go to that, that whole choice again. Too much of healthcare is forced on us. I think that health care should empower people with more choice. And, it’s one of the core tenets that we have is, if you don’t want to know your Alzheimer’s results, you absolutely should not know them, and that’s your choice. That’s why we actually do have an additional layer of consent on top of Parkinson’s, Alzheimer’s, breast cancer. So, we want to make sure that our customers are never shocked and surprised.
Two years after 23andMe was cleared by the F.D.A. to deliver those 10 risk reports, it launched a new health report — for Type 2 diabetes, one of the most common diseases in the world. A recent C.D.C. study estimates that roughly 40 percent of the adult U.S. population is expected to develop diabetes during their lifetime; it’s the seventh-leading cause of death in the U.S. The 23andMe risk report for diabetes is particularly interesting, in that it was developed exclusively using 23andMe customer data — more than 2.5 million customers who consented to participate. It also used a new method of detecting disease risk.
WOJCICKI: One of the most interesting things that’s come up scientifically over the last decade is these, what’s called polygenic risk scores. So, not looking at just one gene and a disease, but looking at thousands or even millions of small effect sizes and adding all of those up to see: wow, this really adds up to a risk factor for people, and we feel like this is a lot of the direction where healthcare is going to go, is in these polygenic risk scores.
You might have expected that a new diabetes-risk test would generate a lot of enthusiasm. But much of the immediate response was critical. Polygenic risk scores work best for people of the same ethnic background as those who provided the data that goes into the risk algorithm. And 23andMe’s database is overwhelming composed of people of European descent. Diabetes is an especially significant threat for African-Americans. An article in Wired argued that the new 23andMe diabetes risk test “is tuned to be most useful for skinny white people.”
DUBNER: So, let me ask you this. I know your database is pretty European-heavy, and some people think it’s way too white. But, it’s also voluntary. So, I don’t know what diversity you’re trying to encourage, but let me just ask you about one particular element of that question. 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.
DUBNER: Some of the stories are just truly horrifying, and the data show that African-Americans today are still much less likely to participate in the health care system. Whether that’s a direct cause or not, who knows, but — and that’s got a serious downside. So are we seeing that same reluctance now, do you think, among the African-American population, maybe other populations, that there’s just a skepticism, the idea of putting their DNA into a database like this is too frightening? And, if that’s true, what are we, the universe, missing out on by not having the sample be as representative as we might like?
WOJCICKI: Yeah, that’s a great question. So, first, we have 20 percent roughly of our customers are non-European. So, while that’s a small percent, that said, on our size and scale, it is the largest such communities 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. We actually have a global genetic diversity project where we are recruiting individuals from specific countries like Tanzania, and Cameroon, Chad. So, we have a bunch of countries where we’re actually offering free testing for people to come in and part of the reason why we do that is the more people who come in from those communities, then we can actually develop the reports to be representative of all populations.
So building a risk test that’s useful for as many people as possible — that’s one challenge. But there’s another big challenge, perhaps far greater, when it comes to dispensing personalized health-risk reports. How do you translate the knowledge of risk into action? How do you ensure that someone who learns they’re at risk for some major disease actually does anything about it (other than worry, or get depressed).
WOJCICKI: We have a lot of information on the site in terms of, what are resources for you, so that people look at this, and they at least know where to go. We’re actively now looking at programs of ways to help people better understand food and behavior. And our first step with that was this partnership we have with Lark. It’s A.I. coaching, and it’s trying to help people change their behaviors. And that’s sort of the next generation of what’s coming.
DUBNER: So give me whatever evidence there may be that learning about an increased risk via 23andMe, or some other genetic test, actually leads to changes in individual behavior.
WOJCICKI: Well, we actually did a study with Robert Green at Harvard, and he looked at our saturated-fat report. And he was looking at what people want to do with this information. And he found that, I think it was even at six months, over 40 percent of our customers, whether they had an increased risk of being overweight from saturated fat or not, they were looking to make changes to their diet.
DUBNER: What does that mean “looking to make changes?”
WOJCICKI: And that was sustainable at six months.
DUBNER: Doing it, or looking to do it?
WOJCICKI: Well, what we find is, a lot of people don’t know what is saturated fat. Well, what do I do? People get a BRCA result, or they get carrier-status information. They write in to us, and they tell us what they are doing. Customers all over the world that I end up meeting and telling me about what they learn and how they’ve changed.
The study that Wojcicki cited — Robert Green of Harvard was one of several co-authors — it’s not quite as persuasive as one might hope. It’s called “Diet and Exercise Changes Following Direct-to-Consumer Personal Genomic Testing,” and it involved an online survey of about 1,000 users of 23andMe and another personal genetics company. First of all, keep in mind something we’ve said on this show many, many times: self-reported data are not necessarily the most robust data. And I’m putting that kindly.
This survey asked people about their diet and exercise habits just before they received their health-risk reports and again six months later. The study’s authors write: “although nearly a third of participants reported making diet and exercise changes that were directly motivated by their personal genomic testing results, there was no consistent evidence that specific genetic risk information received from personal genomic testing … were associated with the specific diet and exercise variables that we measured.” In other words: maybe people who sign up for a genetic-risk report are the kind of people who are already motivated to make a change. And getting the risk report may be a consequence of that change, not a cause. We found another study suggesting this explanation may be the truer one.
DUBNER: So, 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, quote “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, we know behavior change is really hard, and I’m just curious I guess about, holistically, overall confidence that the information will actually be a net gain.
WOJCICKI: I’d throw the Larry Page quote back at you. 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 your behaviors, it’s a really sad outlook. And I believe that there is a way to do that, and we just haven’t figured out the right way. And I look at a lot of these cognitive-behavior tools that are online, that are working — honestly, you look at 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. I’m really optimistic about the potential of the Internet. It’s a sad state that the majority of the medical world has essentially resigned themselves that people are not willing to change. And I’m a believer in humanity, that people given the right tools, people will step up.
DUBNER: I am so optimistic about your optimism. And I’m generally very much an optimist as well. But the only thing I would say on this point in particular, in terms of especially personal health, is that we do have a lot of data in the modern era when the risk factors to personal health have been really pronounced, in part by the abundance and cheapness of low-grade food, and the ability to be really sedentary. And what we see is that even though we have known for quite a long time now what a good diet looks like, what good sleep looks like, the dangers of smoking, the benefits of exercise, etcetera, etcetera, etcetera — the vast majority of people are not able to commit themselves to that routine, even though the knowledge is there. And it speaks to a lot of things that are complicated about humans, which is, things that are pleasurable are really hard to constrain. And I just wonder if maybe the issue is that the people like you, who are incredibly accomplished and intelligent, but also disciplined, maybe assume that the rest of us are as disciplined as you are, and whether that’s a sort of disconnect?
WOJCICKI: I base more of this experience — and even a lot of my customers, customers all over the world that I end up meeting, or people who are doing my hair for a talk and telling me about what they learned and how they’ve changed. The one thing to recognize, it’s absolutely hard. It’s much easier to say, “Here’s a pill, you’re high-risk for Type 2 diabetes or you’re pre-diabetic — here’s Metformin. Take a pill and be done.” It’s harder to change behavior, and that’s 100 percent. But it doesn’t mean it’s impossible. And there’s something about your DNA — of getting something that’s in black and white that’s like, “Wow, we should potentially really take this seriously.”
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Anne Wojcicki is C.E.O. and a co-founder of the personal-genetics-testing company 23andMe. It provides, for a fee of $99, a wealth of information about your ancestry, and for $199, an additional report on your health characteristics and risks. The company has about 10 million total customers, slightly more than half of whom buy the full ancestry-plus-health report. But those are one-time fees; is that enough to justify the company’s valuation of several billion dollars?
Here’s another way to look at it: 23andMe charges people a couple hundred dollars to supply individual genetic information which, when aggregated with millions of other people, creates a database that may have massive implications for the future of healthcare — and for the financial future of 23andMe. Last year, the British pharmaceutical firm GlaxoSmithKline made a $300 million investment in 23andMe in exchange for the rights to use their genetic data for drug discovery. In addition to GSK, 23andMe has partnered with or taken investments from Pfizer, Genentech, and Procter & Gamble — as well as several non-industry partners, including universities and institutes.
DUBNER: So, let’s start with just what you’re trying to accomplish in these cases and how your data gets put to use, or maybe I should say, how our data collectively gets put to use.
WOJCICKI: Yeah. One thing I always found interesting, when I was on Wall Street is that people would consent to be part of research, and then they’d find out that nothing had happened to their sample.
DUBNER: What do you mean nothing had happened to their sample, they were disappointed nothing happened??
WOJCICKI: So, cancer patients, for instance, consent to a study at Harvard for instance, or Stanford. And then they find out that their sample is just sitting in a refrigerator. And for somebody with a fatal illness, that can be maddening. “I just gave you my data. Do something.”
In the early days of 23andMe, Wojcicki says they recruited a community of sarcoma patients to share their genetic data, with the hopes of advancing research.
WOJCICKI: Sarcoma is one of those diseases that’s very diverse, it’s poorly understood, it’s hard for any one center to have enough patients to do big research projects. We had all these people come in, and we talked about different ways we’re going to do research, and consent, and we’re getting their feedback. I remember the woman looking at me, and she was like, “Anne, I’m going to die in the next twelve months. Stop asking me, do something meaningful that’s either going have an impact on me, or is going to have an impact on my children.” And I think about that all the time.
When I look at academia, there’s a lot of fiefdoms. It’s hard for one center on the East Coast to share samples with another center on the West Coast. And it became almost insulting to me. I want to do more. 23andMe is a platform, essentially for people to say, “I want my data to be used broadly in research.” And frankly, pharma companies are the companies that are discovering treatments for diseases. 23andMe has over 150 publications that we’ve done, and we’ve done hundreds of studies. Almost every disease has representation. So, we have over 19,000 people with Parkinson’s. We have over a million people who are genetically high-risk for Alzheimer’s. Eight hundred thousand people with heart disease. Over 10,000 people with colorectal cancer. Seven-hundred-fifty thousand people people with depression. So, massive numbers. We’re trying to allow individuals to have an impact on the research world and discoveries and improve the state of health care for all.
DUBNER: Are these the largest such numbers in the world?
WOJCICKI: Oh, by far. There should be more media outcry that I’m not doing enough, frankly.
A cynic might have a different complaint. A cynic might say that Anne Wojcicki tells an origin story about 23andMe that’s based on her disgust with how Wall Street monetized illness; but that the firm she built uses consumer data to partner with pharmaceutical companies in order to monetize illness.
DUBNER When we asked listeners of our show what they most wanted to hear about when it comes to home-DNA testing, a majority dealt with privacy. The privacy concern was one that we hear a lot, and another is — is frankly, it’s profit. So, the idea is like, “Wait a minute, I’m paying 23andMe for a kit and the test, and the results — 100 bucks for just ancestry, or 200 for health and ancestry — So, I’m paying for the service, but then I read that 23andMe uses my genetic data to make commercial deals with pharmaceutical companies, or so on. 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.”
WOJCICKI: Right, so, 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. 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. So the theoretical funding of like, “Oh, all this money coming in,” is not there. That said, we’re really committed — and this is something that 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? And that’s ten years out.
So at this stage, the most important thing I can do is give people a sense of pride of what they have done. And say, here’s the papers that you’ve been 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 that our customers feel like they’ve benefited.
DUBNER: Do you know what the first one or two therapeutics will be?
WOJCICKI: I mean, the one thing I learned from biotech is that at this stage, you never know. We have 13, 14 compounds in research stage and in development. I’m hopeful that we will be in humans in the coming years. And it’s diverse from cancer to asthma, heart disease. And we have this big partnership with GSK, and what was great there is that we needed a partner who could help us scale. If I know that I have a genetic discovery, and I’m sitting on it, my customers should be angry at me. I should do whatever I can to try to develop those sooner. That was the beauty — GSK really helps us scale.
DUBNER: How does 23andMe protect a customer’s privacy generally?
WOJCICKI: I mean, privacy is, it is key to the company. So in terms of internet security, we do everything we can, recognizing that there’s always limits. We try to be very real with people. When you’re online there’s always a risk. But we do everything we can to make sure, from engineering and infrastructure and data security. We’re doing everything we can there.
DUBNER: Has 23andMe ever been substantially hacked?
WOJCICKI: No. I’m really proud of the team. 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? So, 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 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, what privacy means is choice — is that, I want the choice of saying I’ve opted in, and I want the choice of opting out.
DUBNER: Now, let’s say I want to opt into all those things, but I’m also concerned that my data — non-aggregated, non-anonymized data — may somehow end up in the hands of, one day, a healthcare company, or insurer or an employer, present or future, or a future partner or spouse.
WOJCICKI: So 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.
When someone decides to take a home-DNA test, whether for the health-risk profile or just for ancestry purposes, there’s one huge variable that is perhaps impossible to prepare for: how the information contained therein will affect you, and the people you know, and perhaps people you don’t know.
JOHNSON: Police say the 72-year-old appeared surprised when they swarmed his home Tuesday evening.
A very public outcome, like the capture of the Golden State Killer, may be rare, at least for now. Much more common are the revelations that can reverberate within a given family. In 2010, when Anne Wojcicki was still married to Sergey Brin, one of the founders of Google, Brin took a 23andMe test and learned he had a genetic mutation associated with higher rates of Parkinson’s disease.
WOJCICKI: It’s an interesting story, because it was recommended to us that there was no reason to test, because it was so unlikely that he would ever have it. Right there, it’s an example where the medical community was like, “Don’t bother getting the information, there’s no reason to get it, and what would you do if you did have it?” So the convenience of having a genetic-testing company is, “Well, don’t mind me, we’ll put that mutation on our chip.” We were able to test for it. And I remember the moment sitting in the kitchen and being like, “Hold on a second. I think your mom, she has two copies of this, and you have one copy,” and, like, the surprise of, “Holy cow, you guys have this.” And the advantage, of finding out young is that it gives a lot of time to think about what are the actions you’re doing, and how do you want to try and prevent, and how do you want to live your life?
DUBNER: Did everyone in your family do a 23andMe DNA test?
WOJCICKI: Yeah. For a while, I felt bad, we’d have relatives visiting, and we’d present them with a spit kit. We’re like, “No, no, no, it’s not an entry criteria to dinner. We’re just really interested in building the family tree in this way.” It’s super-interesting.
DUBNER: Now, I understand you learned at least one surprising thing in the familial DNA testing.
WOJCICKI: 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.” I joke because she has a brother. Who never had children.
WOJCICKI: But lo and behold—
DUBNER: That you knew of—
WOJCICKI: It turns out that he did have a child, and was given up for adoption, and this person was raised as an only child, and then suddenly logs in to 23andMe, and lo and behold: there’s a lot of us on 23andMe. It’s been really lovely, there’s a lot of things I can see, similarities with my uncle, similarities with the family.
DUBNER: So, you’ve developed a relationship, it sounds like. Yeah?
WOJCICKI: Oh yeah. For sure. Oh no, 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 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. I love it, I looked actually online the other day, and I saw, “Wow, I have a couple other relatively close cousins I need to connect with.”
DUBNER: I’m sure you’ve heard a lot of happy stories. I’m guessing you’ve heard weird stories, too. And it seems that there is like a new literary genre being born right now — which is the memoir where someone discovers that their relatives aren’t who they thought they were. And you are part of the mechanism that made that possible. And like you said, for you, it’s got great connotations and great actualities, but there are all these family secrets that are being exploded by science. And I’m just curious A) how you feel about that and B) I’m also curious whether that was an unintended consequence of what you’ve done, or whether you anticipated that would be happening.
WOJCICKI: So, I recognize, you have a range of stories. Often people are pretty excited about being united, and sometimes it’s not easy on day one, but that — it’s a journey. And what’s so interesting about the time period we’re in right now is that all kinds of things that were not disclosed are suddenly being unearthed. The most important thing we can do is make sure that our customers are aware of the potential.
DUBNER: Is this however the end of, let’s say anonymous adoption, as we know it? And anonymous egg and sperm donation?
WOJCICKI: Egg and sperm donors have to be aware that this is a technology that allows people to find each other.
DUBNER: But a lot of people who’ve donated over the past let’s say even 50 years who are now being discovered. I mean, you can imagine what a jarring moment that may be.
WOJCICKI: Yeah. And I, I empathize with those people. I can imagine the shock for some of them. The world is changing pretty rapidly. And I’m happy that one of the unintended consequences of 23andMe is connecting people. And my hope here is that people start to look — as it goes from the weird to the wonderful, people absorb, and they can say, this is actually pretty common.
DUBNER: I was just thinking how boring the world would have been if you had come along a few thousand years ago. Because so many stories throughout history, from the Bible and royal families, so many of them are about fertility secrets. Think of all the plays that couldn’t have been written. So, I’m glad you waited until the 21st century to do it.
WOJCICKI: Well, now there’ll be a new generation of fertility-related stories.
WOJCICKI: There’s something about your genetics which is potentially more powerful than looking in the mirror. There’s a reveal that happens.
DUBNER: What do you think that is? It’s so curious to me, because I’ve read, do you know the book by Dani Shapiro, Inheritance it’s called?
WOJCICKI: I haven’t read it.
DUBNER: She came from an Orthodox Jewish family, and she was always the blonde outlier, but she was very, very, very, very proud of her family’s Orthodox history and ancestry. For her, it was jarring, because she had no idea that her father was not her biological father.
Dani SHAPIRO: Let me tell you what it’s like to find out you were wrong — just plain wrong — about who you are and where you come from.
DUBNER: And literally she wrote almost something like you just said, like “stronger than looking in the mirror.”
SHAPIRO: To look in the mirror one day and see a stranger staring back at you. That’s what happened to me. A family secret was kept from me for my entire life. And in the middle of the night, I sometimes ask myself this question. Who am I? Who am I, now that I know the truth?
DUBNER: I’m curious why you think that is, because I didn’t frame it that way in my mind. I think that who raises you and the environment that you’re in, that is so much more powerful or meaningful than the biological determination. And yet, it seems, a lot of people say what you’re saying, and I’m just curious if you have any I guess philosophical-ish thoughts about why that pull is so strong and deep?
WOJCICKI: 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? Why do I have these preferences? Why do I look a certain way?
DUBNER: And why does my pee smell like asparagus?
WOJCICKI: It’s everyone’s top question.
DUBNER: Are you kidding?
WOJCICKI: No. I’m kidding. Yeah. I was gonna say — people are looking for a question of like, “Why am I the way I am?” And that’s actually a beautiful question. There’s spectacular human diversity on this planet. And we’re all a little bit different. And you see mutations in certain areas have given rise to certain characteristics. And and there’s all kinds of reasons why those mutations have happened. Each mutation actually has a story, and those mutations connect you to other people and to the past.
One of the favorite things my children and their cousins love doing, is looking at what DNA do they have in common with each other? And and it’s fun to look at, okay the eye genes — who has them in common? Who got them from the other grandparents? There’s a different way of feeling like I’m, I’m connected to you, I have this bond. And I think that, like I said, people are looking for meaningful connections.
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Freakonomics Radio is produced by Stitcher and Dubner Productions. This episode was produced by Rebecca Lee Douglas. Our staff also includes Alison Craiglow, Greg Rippin, Harry Huggins, Zack Lapinski, Matt Hickey, and Corinne Wallace. Our theme song is “Mr. Fortune,” by the Hitchhikers; all the other music was composed by Luis Guerra.You can subscribe to Freakonomics Radio on Apple Podcasts, Stitcher, or wherever you get your podcasts.
Here’s where you can learn more about the people and ideas in this episode:
- Anne Wojcicki, founder and C.E.O. of 23andMe.
- “Diet and exercise changes following direct-to-consumer personal genomic testing,” by Daiva Elena Nielsen, Deanna Alexis Carere, Catharine Wang, J. Scott Roberts, and Robert C. Green (BMC Medical Genomics, 2016).
- “The impact of communicating genetic risks of disease on risk-reducing health behaviour: systematic review with meta-analysis,” Gareth J Hollands, David P. French, Simon J. Griffin, A. Toby Prevost, Stephen Sutton, Sarah King, Theresa M. Marteau (The British Medical Journal, 2016).