Making DNA Work For You： Anne Wojcicki & Eric Lander (Moderated By Alice Park) ｜ Time 100 ｜ Time

Making DNA work for you. Please welcome 23andMe co-founder and CEO, Ann Wojcicki, president and founder, Broad Institute of Harvard and MIT, Eric Lander, and Times Alice Park. Tough act to follow, but we can do it. I have the impossible act to follow, so we don't have to worry. Well, thank you, Ann and Eric, for being here. I think, you know, in 2019 we can't talk about health without talking about genomics. So, Eric, I want to start with you. As a young researcher starting out, you were involved in one of the most incredible, I think, advances in our modern age, the Human Genome Project, mapping the Human Genome Project. Back then, did you have any idea where we would be today? Did you think we'd be further along, or, you know, are you, what did you think back then? Did you think we'd be, like, much further along in actually treating disease, or are you astounded when you look where we are now and what we're able to do with the genome? So, we are so much further along than I would ever imagine back in the late 1980s when that project was starting. I mean, President Clinton talked about that. He's very proud of the fact that, as he said, he spent three billion bucks on this thing, and the return has been extraordinary. If you just look at economics, you know, they measure it as something like a trillion dollar return on a three billion dollar government investment, but you just think about how little we knew them. So, the project technically started in the last year of George W. Bush, George Bush, Sr., and to indicate how little we knew them, the State of the Union address in which he said, we're going to do this project, his staff gave him the speech, and he announced that we're going to support a Human Genome Project, because nobody knew what a genome was, and the staff didn't put a pronunciation guide there. Little people with little pointy hats. Little Genome Project. But then President Clinton, throughout his entire term, was really the funder of this for the Congress, and, you know, what's come of it has just been amazing. You know, it got started by a whole lot of people, and it was done by a whole lot of people, but it got started because we wanted to be able to find the genes for human diseases. In the 1980s, what do you find? A couple, cystic fibrosis, one or two others. Well, since that project got done, we now know essentially all the genes for the rare genetic diseases. More than 5,000 have been discovered, and it's easy. It's like falling off a log to discover new ones. And then when you talk about the common diseases, what's the mechanisms for common genetic diseases? Alzheimer's, schizophrenia, heart disease, things like that. We knew nothing about the actual genetic causes. Now, there's more than 100,000 particular regions of the human genome associated with particular diseases, and it's changing our understanding about how diseases work. If I pick Alzheimer's, just how many people in this audience have somebody in their family or a friend or somebody they know who's been touched by Alzheimer's? So almost everybody here has somehow been touched by Alzheimer's. Up until recently, the only theory was it was a problem of the neurons in your brain. And all the clinical trials in the last 20 years have been working on therapies directed to those neurons. What's amazing is when you take an unbiased genetic approach and you look across the genome, 80% of the genes that we now know play a causal role in Alzheimer's don't affect neurons. They affect a certain kind of cell that cleans up debris in the brain. They're called microglia, for what's that word. Suddenly, researchers in the pharmaceutical industry and elsewhere are saying, oh, is that what the disease is about? We didn't know. Let's work on it. So it's that kind of arc of we knew almost nothing, to now we have this explosion of information that's guiding things. I would have never guessed, and maybe to the last point I'll make, is that $3 billion that President Clinton spoke about for one genome, that's now about $500. And at the Broad Institute, we do about one human genome every seven minutes instead of every 15 years at $3 billion. And I bet it's going to fall to $100 not so long from now. So I wouldn't in my wildest dreams have predicted where we'd get to. That doesn't mean we know everything we want to know. This is hard stuff. But I'm on the side of, yeah, I would have underestimated where we're going. And you probably could not have predicted what Anne's doing, with 23andMe, to have people able to spit in a little vial and get their genome sequence and get a report back saying you might get higher risk of X, Y, or Z. So we go from the basic science here, which really made possible tests like 23andMe. When you were envisioning the company, there was a lot of back and forth over, we're still learning about the genome. We haven't mapped it, but we're still learning about it, as Eric was saying. How concerned were you that, did you think perhaps that you were starting too soon, too early? Should you wait? Tell me a little bit about your thinking then about, were we ready at that time for a mass market, consumer oriented genetic test? And let me just add one thing before I let you jump in there. We have been running a poll on Twitter with our audience, and the question was, all morning, and the question was, have you ever had your DNA sequenced with an at-home kit? What do you think the percentages were, yes or no? Interesting, I would say it's about 30%? Yes. Wow, I'm so good. 30% yes. Yeah, good, good. My marketing team will be proud of me. It was actually 20, so you're very close. Okay, okay. 20% yes, 80% no. Oh, wow, yeah. Oh, good, there's a big market there for us. Good, good, gotta go. We gotta get that 80%. We're doing your marketing research. Thank you, thank you. 80% of people, we need to spit. But that just, it just goes to show you that even with the familiarity that we have now with genetics and genomics, what is your task in bringing this idea to the mass market, to the public? Well, the beauty of what we're doing, it's totally new. I mean, I think the origins of 23andMe really came when I was on Wall Street, and I saw, like I saw the beginning of when we started, you know, the projects on sequencing the human genome, and then when it happened, it was actually somebody at the Broad that I had consulted with who told me, it was like, Ann, she's like, we're like kids in a candy store. The enthusiasm is so palpable. Like, there's new technology, you can do a whole genome analysis. He's like, it's amazing. Like, it's going to crack wide open. We're going to learn everything. And frankly, that's actually when we started the company, because to me, it was such an exciting technology that was coming out, but I didn't have the belief that it was actually going to be introduced to the consumer anytime soon. And for all kinds of reasons, and that was part of what I learned really from my Wall Street days, like, I didn't think it was actually going to come about in the time frame that I wanted. And also, I felt like there was all this research, like the Broad is a machine, like puts out all this research that frankly we pay for as taxpayers, but I want to learn about it. So, so I felt like, well, why don't I actually allow individuals to get access to their genome, and then see all these papers, all this, you know, taxpayer funded research that's coming out. And there's so many mutations that are really well established, like cystic fibrosis, or hematoma crosis, and BRCA for breast cancer. So I felt like there was this whole world of opportunity to expose people to and help them learn about genetics and science, not through a textbook, but through the lens of their own genome. So Eric was actually one of the first people we consulted with, like in those early days, I think I crashed one of your conferences. And I was like, Hi, yeah, I don't think we were invited. But we just showed up. And we're like, yeah, you know, we're thinking of launching this and introducing it to people. And it was definitely a controversial idea at that time about what is the right way to do it. And I think one didn't just jump in and go great idea. No, I think people, you know, the nice thing about science is people, you know, they like to think things through what are going to be the consequences of giving this information to people? Can they handle it? What's the right way? Do you need genetic counseling? Like, there's a lot of questions. And in some ways, technology doesn't have a lot of that you're seeing some of those issues now with some of the other big tech companies. But like in health care, there's a lot of that hypothesis driven, like, what what could this be? So one of the things I'm most proud of with 23andMe is we set out to do research from day one, to say, we're going to prove that this is actually can be a direct to consumer product, that people can handle results like their Alzheimer's results at home, that they can get a BRCA result actually at home. And so we set out to prove that there's, you know, a clinical validity to this, there's accuracy to this, it's analytical accuracy, and that the consumers can actually get it in a direct to consumer way. So now I feel like we've really proven that out. But in the beginning, we had that hypothesis that we could, and it's really materialized. A remarkable example of something I think that only goes on in the US. We have this thing I sometimes call the miracle machine. Yeah, you have federal government, you got philanthropy, and you have industry. And that creates this amazing virtuous cycle where we create public goods with the federal government and with philanthropy that gets shared all over the place. And then industry runs with that. And then it feeds back. I don't think a lot of other countries have all of those pieces working together like this. So even though in the genome project, we were focused entirely on giving away all the data and all that, we also knew that the ultimate product was going to be that diagnostic companies and pharmaceutical companies or consumer companies would use this. And now that was part of that. Right. Let's talk about that data. Because when the Human Genome Project first was announced, one of the novelties of it was that the data would be available to research. Yes, freely available. And this was an anomaly back then. How has that and it's really opened the door now, I think, to us thinking about collaboration, thinking about data sharing, how has that really accelerated our knowledge of the genome and what we're able to now translate, you know, from what we learn into something useful like a treatment? Well, the tradition in science has been, you collected your data and you analyzed your data and you held on to your data. The genome project, the going in assumption was everything was going to be released every night, freely with updates. Even to folks who were competing with the genome project. And there were some. That has so radically changed at least this world of genetics and genomics. Not every part of science does it right now. But our field, we count on the fact that data sets that are being generated here, there and everywhere can be combined. And now we're seeing in the last several years it going beyond basic research to kind of clinical applications. There's a project that we and others have been involved in starting called Count Me In, where cancer patients anywhere in the United States can sign up online. They don't have to be at a major medical center and say, I want to share my data. I'm going to spit in the tube and send it and we'll sequence their genome. They give the Count Me In team the right to go get a slice of a tumor and look at the medical records. And what's happening is amazing. I'll give you just one tiny example. There's a very rare cancer called angiosarcoma. About 300 people a year get it and it's not a very good prognosis. Well, by collecting patients, going online and seeing anybody with it, 400 people with angiosarcoma have already signed up, maybe a third or half of all people in the United States. And some amazing discoveries happened. It turned out it was somebody, I'm not going to reveal anything so I'll just make up the state, somebody in Alabama and somebody in Arizona and it turned out both of them had received off-label immunotherapy for a head and neck version of angiosarcoma and they both had miraculous responses. Nobody would have ever put together this factoid here and that factoid there, but sequencing their genomes, looking at the properties, looking at their cancer, looking at the drug response and bringing everybody together, the community realized, oh my God, that kind of cancer is probably very responsive to immunotherapy. And within a couple of months, a clinical trial was already being designed and is getting underway. And you could imagine that would remain locked up in file cabinets forever and it's not. And I think that's the point of data sharing. I'd say that's actually the point of a lot of data. I just want to bring up that you're also involved in data sharing in a different way, in an industry way where you're creating partnerships with... I'd say it's more than just data sharing. I think the thing that 23andMe did that truly I think we were the first at doing is making it patient or consumer-centric. So it was this idea that traditionally you go into a clinical trial and you don't get anything back. You don't get your genome back, you don't get the results back. You're actually seen as a human subject. Who wants to be a human subject? So we actually changed that where we said we're going to give you back your genetic information. You can download it anytime you want. You can share it with whoever you want. And the idea really was that we wanted to create a community within 23andMe, but we really wanted to empower you to say if you want to do a study that's part of Pfizer, you can share your genome. You can share it with UCSF. You can share it with the Broad. I want to empower you. And part of it came from, ironically, a sarcoma community that we had where they came to the 23andMe office and they were like, look, Anne, we're going to be dead in the next 12 months. We want you to share our data with as many people as possible. We want to share it with as many people. I don't want to give you my sample and know it's sitting in a freezer. And I think one thing that people don't realize, a lot of samples, when they're collected, just sit in storage. And cancer patients, especially when they know they have a fatal illness, they want to see progress. And so for us, part of it was driving that transparency is that you actually have an objective. You deserve to be the center of your own information and knowing where is it going. And it's part of the reason why we always return papers back to our customers. We try to make sure everything's always in an open access journal because we really feel like the only way we're really going to make meaningful progress in research actually is not if it's one single institution doing it, but if we actually crowdsource that together. And that's why I said we need hundreds of millions of people and no one institution is ever going to have that kind of scale. But in order to really find these types of associations, you need the entire world to come together and all those people to come together from all over. And you need a way that, again, they're leveraging the web to do that. So it's really about, again, it's important to share the data. We actually participate in a number of different collaborations with it. We never give out individual level data, but we do collaborate in a lot of analyses with the aggregate data. And it's really important to us that our customers feel empowered on an individual level and that we as a company are always collaborating to try to move the needle with all of the research. It's patients as partners, not subjects. And I think the patient as partner is going to be essential to make progress in all ends of medicine. And basic research for what you're doing in industry, I think we all see that. And it's fabulous to see you're pioneering that. And it's just great to see the examples of what happens. And I just want to ask you very quickly on the flip side of what you just said. If we look at some of the statistics here, people are still a little reluctant to participate in at-home genome testing. What do you tell them when they raise questions about privacy and they see things on the news like the Golden State Killer has been found because his family relatives who had uploaded, in some cases, 23 new results onto a public database. What do you tell people who are still very concerned about what is being done with their genetic information? So I think there's a couple of things. So one, again, when I was investing on Wall Street, one of the things I used to love getting was like every week you get these Amazon reports of the number of people who are willing to put their credit cards online. And it was kind of seen as amazing, like more people are shopping. Can you believe it? People are actually putting their credit cards online. And the reality is with the new technology, it just takes time for people to be comfortable with it. And I think in genetics, it takes time for people to understand what am I going to get, exactly how is it managed, how is it being used. So I'm actually quite appreciative, like I'm happy with the 20 to 30 percent of people who are saying they have done it. There's a huge market of where it's going to go. And I think that for people, they need to feel comfortable with like what is this information, like what does it mean actually about me? And you're right, the privacy side. So 23andMe does everything we can to protect an individual's privacy. But going to the point that I brought before, we believe you own your genome and you should do with it what you want. And so people do download their genomes and say, I want to upload it into a public database so that they can find additional relatives. And those are the databases that have been used for things like the Golden State Killer. So the reality is that as a society, we actually all have DNA in common. And that's one of the more challenging aspects of privacy is that like, for instance, if I have my genome and I make it public, it has implications for both my sisters and my children. So people need to be aware of that. And we try to make sure that when we are consenting our customers, that people actually know about this. So there's always going to be those public databases. 23andMe, though, again, has a very clear privacy practice that it's your information. You have the opportunity to consent if you want to share it. You also have the opportunity to never share it. And so it's really the power. We're trying to give the power back to the individual to control what do they want to do with their genetic information. Well, we're clearly at the beginning of the genetic story and what we'll be able to do. So I want to thank both Anne and Eric. And we'll follow this story for where we go, both on the consumer end and from the basic research end. Thank you very much. Thank you.