Decoding the DNA Opportunity with Anne Wojcicki (23andMe) | Disrupt SF (Day 1)
10:36PM Sep 5, 2018
Our next guest, she needs no introduction whatsoever. Please welcome from 23andme and geeky and our moderator, Sarah Burke.
Hey, hi. Hi. So I, your company, 23. And me, if we make it a catchy name, uses spit two tests to test from anything from where our genetic ancestry came from, to health trades to whether or not we are going to be more prone to drinking coffee. But in the last few years, you've also gotten into a lot of research products, projects. And I want to know, what do our genetic data have to do with Pantene and activism?
Oh, do we? Is there something isn't there something with panting and yeah,
with PNG beauty.
You know, we have we've done a number of research partnerships like we look at,
you know, the, the beauty of what we have done, like, when I was on Wall Street, I always felt like, you know, people have, you know, a chrome study and they find all these people with Crohn's disease and they only study Chrome's and then they have a heart disease study. And the only study heart disease and I kept thinking like, people are not mono disease like they they have like the people with Chrome's. Also. Some of them like Pantene. Some of them have allergies, when they dye their hair. Some of them also have heart issues, like people have everything. And, you know, the beauty of what we've tried to create as this is this community of people, where people tell us all kinds of things about themselves. And then you have the ability to participate in all kinds of research. So you might like we have a family history of, you know, breast cancer, and my, my former husband, he has a family history of Parkinson's, we could be a control freak you if you said, Oh, you had, you know, Crohn's in your family, you can be you know, you have the Chrome's like, we can be controls for each other, and that we can answer questions about everything. So it's been really fun for us to do research in a number of the traditional disease areas, but also ask people about their daily life. Like, what is it that is interesting, like all of us use shampoo, you know, some more than others and, you know, makeup, etc, like, but wellness and lifestyle is a really interesting area for us to do research. And in some ways, those areas, you know, NIH does not frequently fund wellness studies and, and sort of that, that personal care kind of area. And so it's a way that we can leverage the database that we've in the community of people that we have into all kinds of very different research topics that are not generally funded. I think one of the really interesting research topics lately is into cannabis. Yeah. Oh, I agree with that. So cannabis,
you know, we've we've participated in some research projects on that, but I think it's a whole especially in this we're kind of in this hybrid state of legalization and a lot of people self medicate, so but because it's not federally legal, it's it you can't get federal dollars to study well, what really is the interaction between cannabis and antidepressants and, you know, in pregnancy, and people use it a lot to self medicate in, you know, again, and cancer and depression and obviously, clearly just for recreational. But there's not a lot of data about that. And so I think that's another area I again, because it's, I feel like 23 me represent research that's interesting to the people that we have an opportunity to actually do research projects on the gun on things like shampoo and cannabis. Yeah,
thank you. And, and I think along with not only research, but also using our DNA data for good you, you recently you saw the crisis at the border, there are still hundreds of families that are still separated and you you offered to do something about it, what was that we did,
we offered, we offered to give away kits to families that had been separated. And, you know, a core part of our business is reuniting families. So we have ways we said we are willing to create a custom product essentially for these families. So you're just matching within that group. And not necessarily as broadly, they wouldn't be part of the normal experience. It didn't move forward because of all kinds of there is political questions and privacy questions. And so it just my goal, like that was such a complicated situation. My goal was to try and help but I didn't want to add to the chaos of like our agenda. Yeah, so. So we we offer to help and I think 23andme we donate kits all the time, we think about, again, diversity, we think about ways that we can help families. So like we try to be a company very much with a corporate soul. And that was an area where we said, we're happy to help if it's helpful, but we also are not willing to push ourselves if it's not helpful. Sure. Yeah.
And and from what I understand the nonprofit's didn't take you up on it because of the privacy concerns. Yeah,
and that was workable, I think it was one of those things again, we we were willing, we said we could set up a separate community for them, but it wasn't something that they wanted to pursue. So which is fine. Is it
something that you can pursue internally? Is there something that you can add time and resources to and
we can't find I can't the main question is you have to get access to the people and so like Without them I can't do much right you don't have a list of who's who I don't have a list of who's who and I apparently the government doesn't have a list of
i do i think that we would actually need their saliva like we can't there's there's a limit to what we can do without the actual physical person there
that makes sense and I want to talk about drugs with you not just cannabis but also you recently pulled him 300 million from blacklist McClain and what I want to know is what are you hoping to come from that partnership
I I love I love this the GSA partnership. So since so from my wall street days, like one of the things that I found remarkable is how horribly inefficient drug development is. So I used to joke because I lived in Poland briefly. I was like, it reminded me of communist times. Like it was the only industry I knew that actively bragged about how they got worse every year, like so when I started investing in 1996, it was $700 million to make a drug. And when I left it was $3 billion to make a drug. Like who does that outside of communism. So I was like, a passion for me is like, you know, what is a way that you could actually make drug development more efficient. And ultimately, you know, people have all kinds of mixed feelings about drug development companies. And, but ultimately, like, if you're somebody who has hepatitis C, you are very grateful to Gilliam for making that drug come to market that cures hepatitis C. So ultimately, like, I want us to be in the business of actually having a meaningful impact on our customers lives. And if some of our customers want to prevent disease, we're going to help them prevent disease. But for those customers who actually have a disease, we want to be See, can we be part of the solution of carrying that disease? And so that's the reason to say we're bringing in together all of these people. And if we start with human genetics, is it possible that we are going to have a higher success rate than the rest of the industry. So when you look at the $3 billion it takes to develop a drug, a lot of the reason it's so expensive is because almost everything fails. And so we're looking to see if we start with human genetics Do we have a higher likelihood of success and I think there's potentially no better feeling for our customers of saying you guys have been part of a cure for a successful treatment for depression or Chrome's or Parkinson's disease. So we're really trying to see, you know, again, have this huge community have people who are consented and engaged in that research and develop, you know, those therapies what happened, the reason why we signed up with G, sk, is that I joke, like, each one of our molecules is like a child. So, you know, we have over 10 children in development. And it becomes at some point a lot like it is, it is a lot to scale that and GS K, what they do, they have a phenomenal team, they understand genetics, and they know how to scale it's like thousands of people in the building who really like they spend their entire lives dedicated to trying to develop drugs and make an improvement in people's lives. So it's a great partnership, because we have this engine that can develop ideas and we need a partner who can help us really scale and I have incredible faith in the CEO ama the head of research how Baron like it's a phenomenal team of people. And again, I think for me, because we're such a mission driven company finding a company as well that has a soul and is willing like, were you No, it's not everyone wants to partner with us, like we have a radical mission of like, we will always do what's in the best interest of our customer. And so GS k is the type of company that is really willing to think about how do we actually treat people differently in the clinical trial? How do we make sure that people feel engaged like what is the right way that we can do this that really gives back to our customers at
the same time and you have what potential 3 million people to add to their data set but at the same time, there have to be some privacy concerns right so how do you handle people have opted into 23 and me and they've opted in 23andme research but how do you handle privacy and data going to Glaxo Smith client
So two things First the data doesn't glow go to Glaxo's McLean like it stays it's your data is consented to stay within 23 me. So we're working with them on analysis. But the data is staying within 23 me. Secondly, one of the first things we did when we sign when we have this announcement, we emailed our customers to say, if you do not want to participate, and you want to change your consent status, here is how you do it. So 23andme for me is like all about our customers having agency if you want to, like participate in research, that's awesome. participate in research. If you do not want to participate in research, that's also awesome. Like you don't have to, and if you want to share your data with your friends and family and others share it if you don't want to don't. So we've tried to make it like, again, the way so many other aspects of your life work like like you're an adult, if you want to share, share, if you want to participate, participate, we try to make it really clear for people what's happening. And if you do not want to participate in research, you can just opt out. So they
they're already automatically opted in, they have to go and opt out. Well,
if you for instance, are a customer and you have opted into research, we send you a message and we are doing this research program. And we asked you do you want to I mean, we're not asking whether or not you want to say yes, again, but you have that opportunity at that moment, then, or you have the opportunity anytime to say you do not want to participate again. Okay. So if you have opted in, then it goes and I understand it's anonymized data that goes to block. It's always anonymized. It's not there's no data going to Glaxo. So to me, that's like one of the most important things like the data is not going over there. It's staying within it stays within 23 me. And what we do is imagine like we're looking at all this analysis on, let's say, Chrome's and we look at, you know, 20,000 people and we say, Okay, look, there's this mutation here. And there's a mutation here and those look like potential drug targets, you know, no one wants the individual level data, it's not interesting, like, what you want is the conclusion from the aggregate information to say, and what Glaxo is great at is that follow up like the follow up of like, how is it like, again, for our what I refer to as our children or our drugs in development, or in research is that all of those require a lot of wet lab work and, and that's where GS K can scale like, they have all kinds of ways to be able to scale that development process. So you are doing the research internally and then telling them based on our research, this is what we see we collaborate we work with them on that will go through and will say, Hey, here's what we're finding on the aggregate data, got it and say, and then we again, we look at it, we've always said that there's a funnel, you know, there's like, all kinds of interesting ideas that come at the top we kind of sift through the funnel and then we go through with them with visit that comes out and that's how you present something you prevent something like, Cambridge Analytica or third party has it and then someone else
yeah, it's always been pretty clear about I mean, I think one of the big issues that's common in and I'm not an expert in Cambridge Analytica, but like, we've always been really clear it should be your choice about how your information is used, like, I had this incident that really bothered me where I had this procedure at Stanford. And then suddenly, I got an email from Kaiser that said, we will not pay for your procedure. And I
was really offended. I was like, I never asked you to pay like, how do you do, you know, like, it really bothers me like these things, like, why, like, you have no idea where your health information is, like, at a minimum, like, what, 23 minutes trying to do, at least say, like you're in charge your empower, like, if you like all of us, like when we have a friend and family who is sick, it's a painful experience, because like, we really don't treat many diseases as well. So we're trying to move the needle. And that way, if you want to participate, it's totally great. If you don't want to participate, you obviously don't have to. So we will always keep iterating in terms of what are ways that we can improve privacy, we get feedback from people. But we really since day one, we have thought an excessive amount about like, what are ways that we can make sure that you're empowered, that we're transparent, and that we're doing what we can on your privacy. You also told the Wall Street Journal, the existing health care system is focused on treatment, not prevention, because prevention doesn't make money. Sure. So you're working with these drug companies, which by and large, make drugs for treatment, I want to know, What is 23andme doing for prevention, we do. So I would say the majority are like our product today is really focused on prevention. So you sign up for 23 me, and we tell you, what are some of your risk factors. So for instance, you're high risk for macular degeneration, and you're 20 years old. And macular degeneration is the leading cause of going blind. So there's things there's potentially vitamins, there's wearing sunglasses, there's a lot of steps you can potentially take, if at 50, when you turn 50, you should go and get an eye exam to see whether or not you actually have the beginnings of Makkah generation there are in this case, drugs to treat it if you do have it. But preventing, losing your eyesight is like one of the most important things you can do to maintain your like independence as an adult. And so I think about for us, like all kinds of diseases with Parkinson's, Alzheimer's, you know, the, the whole carrier status area, like we talked, you had a baby, most people don't get carrier status testing until they're actually already pregnant. So things like cystic fibrosis, like we allow people this part of what we try to say is, it's so much better to find out you're a carrier for cystic fibrosis before you're pregnant. Because once you're pregnant, it's it's it's more challenging, there's more, there's more ethical questions to think about. So we really think about what are ways we can get you this information sooner we did do last year we launched the or the actually this year, I think I came with this year's are blurring, we launched the largest weight loss study. So 70,000 people looking at a six arms study, looking at different ways are their genetics and weight loss. So I would say in some ways, we're 12 year old company, we're not profitable. The majority of our work like my I'm constantly reminded like, like we are, we have to have the balance of like we are, we do want, we want to develop cures and treatments, we also really want to do what's right for the consumer. And we think a lot about prevention. And I think that that's where you will see us focusing more and more a number of the reports rolling out we're specifically thinking about ways that we can help consumers prevent disease, is that
weight loss is that where you tell us if we have the fancy or not now
we have that different we don't. So what we do is we have a weight report whether or not you're genetically likely to way more way less and and so no, we target enter trait that is just as one of our it's one of our what's one of our wellness reports, okay, out there. So we do think a lot like wellness and prevention and just going on because this is such a hot topic for me, you know, Alzheimer's is a real issue. And I can look at my data set and say, we have 20% of our customers who are genetically higher risk for Alzheimer's and all simers prevention study. Like when I asked academics and pharma companies about it, they're like, you know, you can never do a prevention study. It's like, it's so expensive, it's impossible to control for, but I think these are ways like 23andme is uniquely set up to really do that kind of longitudinal prevention study. So we are talking about specifically in Parkinson's, because I also have people who are genetically high risk for Parkinson's, can we actually do an interventional study, you know, that's going to be, you know, your study thinking about are their behaviors that pet specifically help prevent or mitigate the outcome of the disease. So I think in all times, there's all kinds of things that we can do. And this is a big priority for me. And I think it's, again, one of the things that we're really uniquely set up to do and if we don't do it, I don't see anyone else doing it. You're talking
about a lot of these diseases that happened when we're older, and those tend to be ignored diseases. By and large, I think I read something about Alzheimer's, they're not even
trying to work on drugs right now for Alzheimer's disease, are you what are you doing within 23 and me to look at it? I mean, besides Alzheimer's is really hard. So there's a number of companies like we have participated in helping recruit for clinical studies, there have been some research projects that we've done that are really interesting. So for instance, the genetic variant that's high risk for Alzheimer's is called a Bowie. So we did a project looking at people who were over 80 years old, have one or two copies of that genetic variant. And they, they have no cognitive issues. So they like mentally, we do phone screens, we do online tests. So those people we call as escapers, they have a genetic variant for it. They're 18 years old, but they're totally fine. So those people are really interesting to study, because they potentially hold a genetic clue about why they do not have the disease. And so that's specifically some of the things that we can do. We're not pursuing neuro neuro like neuroscience and neuro disease right now. But that's specifically projects that we will do with, you know, academics and with pharma partners, because we would like to help advance that area, but we're not the ones leading it right now. So prevention, it would be really interesting to look at, you know, prevention. But again, that is a really long term study, that
you have such a huge data set from consumers who have been very active at building it up and helping me with research. And I'm wondering, because CRISPR is such a hot topic right now, now, are you doing anything within CRISPR? Do you plan to do anything there,
we're not doing anything in CRISPR right now, I think it's, you know, CRISPR is a really interesting tool,
but figuring out exactly how it can be used, and how it can be delivered to all the cells in your body. And it's, you know, my drug development team is, you know, is very practical and realistic. Like, there's a number of projects that they're really excited about that have come from the 23andme community. And so we're focusing on that. And I think CRISPR is a really interesting tool, but I don't think we're not pursuing it right now.
Okay, I want to talk about the something else that happened in the news earlier this year, the Golden State killer. Yeah, and I know you guys didn't, it wasn't your data set that they use to catch the serial killer. But there's a very big possibility that law enforcement and I've heard has come to you before in the past and said, We need your DNA research. How do you handle that one, law enforcement says we need to catch a serial killer, we need to catch person, we need your date DNA, we say no.
So it's one of these we have a transparency report on the site. It was it's really like the Golden State killer is such an interesting story.
And in some ways, like, I'm really proud of my team, because we spent so long thinking about our consent form, and the way we were setting up in those early days. And that's really again, we've, we've thought through a lot of this. So this is specifically one of the things that we thought through. So 23andme does two things. One, we require a lot of saliva from our customers, specifically for privacy reasons, like we don't necessarily need that much saliva. But you can't accidentally drool that much saliva, you can't accidentally like fall asleep somewhere, and swab it and stick it in and like it and send it and have it work. So we intentionally thought through to make sure that like when you spit, it's your spit. The second thing is that we don't allow people to upload data from a different source and see the the face of DNA families like the DNA relative Finder. So we don't allow people to do that. So for instance, in the Golden State killer example, where they found a sample and they upload into the data set, and they are able to see are there any family matches, we don't allow that for our customers. So we've we've set up the the we've set up how we structured the product, and how we set up even the initial spitting in a lot of ways to make sure that it's like, really you that is spot intentionally, and that there's not going to be outside data sources that are put in there to see whether or not they are matching Does that ever weigh on you that you have the potential to help catch someone really bad, I think that it is, it's not our business, like, we're really focused on the empowerment of the consumer, and wealth, you know, your health area, your ancestry identity, all of those things Jed match, and there's other groups out there now that say, they want to do that specifically, as a business, that is not something that we are going to be personal, in
fact, you cut off API access recently,
API actually is, is a totally separate issue. And that one is it was a little. So again, we were coming out with a blog post that will put out about it. So we put up the API with really, with this hope that like, oh, there's going to be all these companies that come and like the world of genetics, everything is going to be personalized. And kind of what we realized after years, is that there's not a lot of people who understand genetics. And a lot of the big companies like people don't yet understand exactly how we are going to personalize and the quality there's a number of the partners we had that are really interesting, but they don't meet our scientific bar. And like in what wine you should drink wine, there's, there's a lot of wellness nutrition that is just like, I'm really I'm uncomfortable with it. And a lot of the reason why we were okay with it is after the FDA, we couldn't return interpretations to people. So we felt like it was a better compromised to say, we're going to let you have access to all this other information, even though we know that there's some errors in it. But you're kind of it's, you know, there's a level of independence that you have, you can go and actually get this different interpretations. But after Brock came out, in some ways, the scale tipped because we're giving you a lot of the really valuable information. And then a lot of the information that people are getting from other the some of these other sources was causing a lot of concern, like medical concern. And then I think that the, you know, when things I've often said is that healthcare was the original fake news. And there's a lot of ease like it's, it's easy to prey on people about a diet or a wellness and, and there was some of the information and some of the, you know, companies that had just a real lack of science that I was uncomfortable with. So it's not that we shut it off, it's that we're actually I'd say, we're kind of doing a clean sweep. And we still do a lot of partnerships with academics, we do a lot of partnerships around research. So those all use the API and we will keep doing partnerships with companies that meet our scientific criteria. But I think that customers, I feel really strongly about this, like, it's really hard for people to necessarily know exactly what is real and what is fake. And we have a responsibility to make sure that we're providing access to like, really good information. But when we know that something is intentionally sort of, in the world of like, fake news, like we need to make sure that we are actually providing like reality for people.
Right. Yeah, one last question. You you continue to evolve as a company you've from, from its beginnings and the split test and telling us about, you know, various traits we have to now Dr. Research, where do you see 23 and me in the next 510 years? What, what's next?
I think I love my company. I love it so much.
I think that like I think about again, for us, like one of the you talked about prevention and I really think like, one of the most interesting things we can do is help people live healthier and really understand prevention like tart, like what if I go to my doctor, we're all we're gonna hear the exact same things like exercise more, you know, lose weight, don't smoke, and I think there's a huge opportunity of personalization, like whether or not like we're both in our 40s like, who should get a mammogram Should I get a mammogram? Should you get a member like it's not the same for everyone, like not all 40 year olds are the same, not everyone has the same risk factor. So I think the next decade for me is about really crafting a world where we're truly looking at all the information about you and how can we actually help you live a more personalized life related to your health so I think it's again I that's why I said like, I love the prevention space there's such a there's so much potential and and again, no one is the issue you know, no one really makes money on preventing diabetes but I think it's without a doubt that is what our our customers want. So we will provide it
Alright, thank you so much. Thank you.