Benefiting from the Human Genome | Anne Wojcicki || Radcliffe Institute

good afternoon everyone i’m tamiko brown nagin dean of the radcliffe institute for advanced study at harvard university it’s my pleasure to welcome you to our annual cam and judy davis dean’s lecture in the sciences before we begin today’s program i want to take a moment to acknowledge cam and judy davis whose support makes this lecture series possible along with members of the ratcliffe institute leadership society and all our annual donors your generosity keeps rockcliff programming free and open to the public and we thank you today we have the opportunity to engage with anne wojcicki who is co-founder and ceo of the path-breaking biotechnology company 23 and me i’m delighted to have anne with us today the potential of genomic science the science at the heart of 23andme success is immense and the field is rapidly evolving genomic science is helping us understand the causes of disease and it is opening exciting new avenues in clinical treatment of cancers and many rare conditions genomic science is also being used to identify precise drug targets and anticipate drug reactions based on patients genetic profiles and this is only the beginning far more research lies ahead biomedical big data also has transformative potential vast repositories of biological specimens and data known as biobanks have proliferated to include open access research projects such as the uk biobank as well as those managed by private companies like 23 and me 23 in may has sold over 12 million direct to consumer genetic testing kits and as of last year some eight million of those consumers had opted into the company’s research efforts in pursuing this research the company has also helped universities and pharmaceutical companies recruit study participants overcome geographic barriers to clinical trials and utilize 23andme’s genetic data bank but as we launch the potential of genomic science we must also consider the full spectrum of scientific ethical legal and social implications of this rapidly progressing field it’s clear that we’re still learning about the science itself and about the health conclusions one can responsibly draw from the genetic information that fact begs the question do consumers have the resources they need to understand the results of direct to consumer genetic reports and once they have their data can consumers access healthcare providers who are equipped to interpret that genetic data and who can advise on appropriate health interventions beyond individual consumers are the communication strategies used to share genetic data with the public responsible and culturally appropriate what input should communities have in determining how their data are presented we must also weigh scientific questions about the benefits and trade-offs of specific clinical applications practical questions about uniform standards for research and clinical care and ethical questions about consumer and patient privacy and informed consent fortunately our distinguished guest this afternoon brings extensive knowledge and experience to bear on these complex issues ann wojcicki graduated from yale university with a bs in biology and spent the first decade of her career on wall street working in healthcare investing in 2006 anne co-founded 23andme with the mission to help people access understand and benefit from the human genome not long after 23andme put genetic information directly into consumers hands with just a small vial of saliva the company can trace your genetic ancestry and identify risk for certain diseases evident in your dna since then the firm’s impact has only grown ann has been called the most daring ceo in america by fast company and she was recently named one of the 16 most influential and inspirational modern tech leaders by forbes after anne’s remarks she will be joined in conversation by my colleague jonathan zitring a noted expert on cyber and privacy law jonathan is the george bemis professor of international law at harvard law school a professor at

harvard kennedy school and a professor of computer science at harvard’s paulson school of engineering and applied sciences he’s also director of the harvard law school library co-founder and director of the berkman klein center for internet and society and the author of the future of the internet and how to stop it thank you ann and jonathan for joining us now for some logistics following anne and jonathan’s discussion will turn to audience questions you can use the q a feature on zoom to submit your questions at any point during the program we only ask that you keep your questions brief so we can address as many of them as possible with that let’s begin welcome anne the floor is yours thank you so much i am just really thrilled to be here so with that i will start going through um a brief presentation and then we’ll be able to jump into discussions with jay-z and and the audience so the company really started um out of this question of who’s in charge and one thing that i realized when i worked on wall street is um i’d have these conversations with you know pharma companies and health insurance executives and hospitals and people would all debate about you know you know this this patient’s data and the the subject and they were always talking about the patient but i i realized the patient was never there and it’s one thing that i realized as i thought about my own experience and as i saw how the healthcare world worked i realized that we’re not actually in charge that the whole system is set up in such a way that it’s almost as close to something i can see as like as communism that that the the entire ecosystem is in charge of you and that what i realized is i want to be in charge i want to be in charge of my own health so 23andme really came out of that passion and the thing that i always thought about is well why why did i feel so strongly that i needed to be in charge and why is it that the the world that i saw when i worked in investing i found to be so offensive and part of that comes from my mother my mother who’s you know she’s written books about the family my mom is um a real uh she’s a real character and one thing my sister and i we had a good time we had pulled our medical records one day from kaiser and uh we saw this note in there and it said note this mother has had a hard time being rational as most of us in pediatrics know and for anybody who knows my mother this absolutely makes sense and so we asked you know we talked to my mom you know why why was my mom always fighting with her doctor she was always questioning and always wanted to be in charge and part of that comes from the story of my mother um this is my mom when she was little and her little brother david and she’s about five years older than david and what happened is that david ate a bottle of aspirin and he died and it wasn’t that he died simply he ate the bottle of aspirin and they took him to all kinds of different um doctors hospitals and each time they said he’s fine like take him home and my grandmother would get back in the car with my mom and say it doesn’t it’s not right it’s not right they go somewhere else and would say it’s not right and finally um they got a doctor to to take him and my grandmother called in the morning and said you know how is he doing and they said he’s dead he’s in the morgue and this experience was obviously so traumatic for the family but what my mom really took away from this is that if you don’t take care of yourself no one will and i have had this mindset beaten into me since i was little that i have to be the one who’s taking care of myself i need to learn to be independent i need to learn that to ask questions that i need to know that no one is going to care as much about my health as i do and that i really have to be in charge so a lot of what the company came from was this lifelong experience that my mother had taught me combined with the wall street world that i actually i want to be in charge of myself i want to be in charge of my health and that this system that we all live in does not support you actually being in charge of your own health care so why did i always focus on genetics and you know genetics genetics was something that i started to see in my investment career and i had always since a child always been fascinated by by dna and the reason why is i find that your dna is you know it’s what you’re born with

you can’t change it everyone has a certain kind of you know deca cards but that there’s this incredible world of of lifestyle and environment and if only i knew what i was at risk for that then i could potentially change my environment and what i said is like i absolutely want to change my environment i just need to know what my genetics are so i know how to think about how to live in the best way possible so 23andme started in 2006 with the idea that we help people access understand and benefit from the human genome and those three words are really um critical mission words for the company the access is something that again i saw on when i worked in in finance that most people don’t have access to care it’s um it’s expensive it’s um hard to often get and so it was really clear to me that 23andme was going to be direct to consumer from the start and it was going to be affordable and i saw in other parts of the world they actually have these direct to consumer models that work that can make sense and that there is absolutely a way for us to have a direct to consumer um you know opportunity to allow genetics out there understand was really um a reaction to what i saw in the medical world which was sort of the white coat supremacy that we um that only we can understand how to take care of you and that people cannot actually understand their own genetic information and that it was again sort of this um the hierarchy that you need to have a medical degree and you need a phd to really be able to to understand it and what i found through my experience of volunteering in hospitals and working at nih is that if people are given the right tools they can absolutely step up and understand and in some ways this is also relates to how my mom you know my mom thinks about how she raises her students and how she raised us as kids if you believe in people they will rise up they will absolutely have the opportunity of understanding this information so that is a key component of this company and the benefit is really about our research model that if we all come together that we’re we’re actually all aligned our incentives i with everyone on this call i’m aligned with you that we all want to be healthy and we want to prevent disease and we want to have the best for our family that all of us will benefit from the human genome if we come together so the the research component was really all intertwined with this idea that we will benefit from the human genome and 23andme is going to lead up how can we crowdsource research so that we the community all benefit also central to to 23andme the principles of how we operate i was very intentional that it’s going to be different than the way the rest of the health care system operates and that is going to be based on choice and it’s going to be based on transparency and when i think about choice i often find when i go to the doctor’s office when i go in when i had my children for instance and i have to sign the consent form i’m not given a lot of choice i often mark up the the consent form but i’m not given a lot of choice and that i’m not necessarily given the opportunity to pull my data if i want to also things like research i might want to participate in research but it’s hard to participate in research and what if i change my mind so 23andme was all built around this idea that you we give people those controls to potentially opt in to potentially if you want to change your name you can always opt out we also allowed people to download their data which again was referenced in the intro is controversial should people have access to all their raw data should they have access to their entire genome we also created tools for how do you actually see some of the sensitive information areas like alzheimer’s breast cancer risk so we created an additional level of opt-in so that you have the choice to say i want to learn about my ancestry i want to learn about you know some of my the wellness features but i don’t want to learn about alzheimer’s so we give people that choice about the amount of information they want to understand dna relatives as well we give people that choice do you want to actually opt into dna relatives or not and last we always allow people to delete their account if they want to transparency is also for me it was such a key component of what had to be part of 23andme because i feel like what’s pervasive in the healthcare system is a lack of a lack of transparency about what actually is happening with your data and and what are the incentives so for me it was really important that our consents are

actually readable and that our customers understand them and we can see this oftentimes our customers will get to the consent and they pause and sometimes they wait and then they come back but we want our customers actually to really understand what they’re opting into and we should make it clear it’s always an opt-in people have to actually click do you want to consent for research do you want to click you know consent for you want to opt into individual level shared you want to have your samples bio banked so it’s a long process that we made it intentional we want our customers to know exactly the types of things that we were taking on we remind people when they are taking surveys that they’re opted into research so again for us that was something that was important is keep reminding people about the the decisions that they have made um we have things like a transparency report we are one of the leaders that that put that out there in in genetic testing companies we have a privacy center to help our customers understand everything that we are doing so that they know that they feel comfortable and that they’re aware um the 23andme blog is really an important way also for us to communicate with our customers when we have research findings when we’re doing something that we that’s new very different than a lot of other types of research this is super interactive we see our customers as as partners you know our research participants as partners not necessarily as human subjects where we are not have a wall between the information but we’re continuously wanting to update our customers about what is happening also we make sure our customers have access to the research when it does come out it may has been really important for me that this is actually in open access journals so that customers can always read about it so just as history the healthcare world does not always have this sense of choice and transparency and this is one of the papers that i always found fascinating um in 1961 jama did a study asking surveying physicians would you tell your patients if they had cancer and what they found was amazing that over 90 percent of physicians were saying they would not want to tell their patients that they had cancer so there’s been this mindset and again part of also again if you think back on the key principles of you know our mission of helping people that they can understand we’ve always believed that transparency and making sure our customers have that the the right to know this information is really important and that the customers can in fact understand it what’s interesting for us is 23 may start in 2006 but it’s now you know 2020 we still have a fair amount of resistance about whether or not consumers should be empowered with direct access and there’s a couple major groups someone like acog the american college of of sectors and gynecology actually for instance has strong statements saying that this should be discouraged and in fact when we’ve tried to engage in dialogue with the organization we’re not even allowed to attend to participate in the dialogue because it’s so clear that they want to discourage direct-to-consumer testing and they want this to be flowing through a medical professional so again part of what i look at that is so key that 23 me does is is the belief that not all health um actions not all procedures need to be mediated by a doctor or a health professional and that in fact that’s part of what we’ve gotten now with the fda is is the data to show that sometimes a consumer actually can actually they can access it themselves and they can understand it themselves but what we find is this incredible resistance that is still there so one thing that i also have found the lack of transparency in choice that is also pervasive in the insurance world and this is an example in breast cancer testing and one thing i find is that breast cancer testing by insurance companies is very prescriptive and restrictive of who actually is going to qualify for breast cancer testing and a lot of people go missed because of the insurance criteria and the question i always have for customers is do they realize that oftentimes the health care that they’re getting is dictated based on insurance guidelines and not necessarily about what is in their best interest and so one thing we actually did a paper looking at our customers who found that they had a one of the ashkenazi jewish bracca mutations so we test for three of those and what we found is that a number of our customers never would have qualified for insurance um reimbursement and so if they had not found their

broken mutations through 23andme they never they would have been missed in the system so they never would have qualified and that’s the question i have when i challenge the health care system is that when customers want to get this information um how is it that they can how is it that we can actually start to circumvent some of those guidelines to actually do more about what’s in the best interest for individuals and recognizing that the insurance guidelines have real limitations so one thing i wanted to pull up here which i also just found fascinating and this is by a professor at at harvard who i do not know um who who created this health data map and and and and shows the um the transparency of what actually happens with your data and again this is something that would be great actually to talk with jonathan about too is the the the facebook world and google there’s been a real push of transparency in where is your facebook information going who has it but what i find is some of the biggest offenders in healthcare is in healthcare where your information it becomes de-identified but then it circulates everywhere and i wonder do patients actually know where all their information is going and so what’s also been very clear for 23andme is that we wanted our customers to own their privacy and the choice of how this information is being used so again one of the things that was controversial about 23andme in the early days is we allow customers to share their data i have the ability to to share my reports with my parents with my siblings and we make it really easy we make it easy to get a download but it’s really hard for all of you to actually pull your medical record if you try pulling your medical record it’s really hard to get the full record yet your information is circulating entirely around again in this closed world that you do not have access to so even areas there’s companies called surescripts that has all of the prescription data in this country yet not a single customer can get access to that data so 23andme like i said came out of the desire to do things in a really different way that was entirely going to be consumer-centric so we have two products we have an ancestry product we have a health and ancestry product one is 99 the other is almost 200 and we are now we’re by far the most comprehensive direct to consumer health and ancestry product out there we create an experience this is um again a different type of approach where i said i want healthcare to be fun i want it to be it’s why our chromosomes look like um you know they look like mica night candies like we wanted it to be fun we wanted people to learn about their health side we want them to learn about their ancestry we want them to get insights so they feel engaged with themselves so i’m really proud we now have an incredibly diverse set of health reports wellness reports and the ancestry side and we’re not going to talk about ancestry but holy cow we’ve opened up this whole world of identity and understanding what is that definition of of of who you are and how you connect to the world and what does that mean to have jewish ancestry what does it mean to have african ancestry so it’s opened up a whole new world that is frankly just incredibly exciting so the ancestry service like i said i talked about what we do in terms of the ancestry composition we also have something the family tree and what we find is people absolutely love finding um individuals that they are connected with so this has been really the way that customers start to get comfortable and have started to learn about genetic information the health service that we have is really all about um learning about risks where we believe our customers have the ability to do something um you know either for themselves with this information or to share it with their physicians we had a warning letter in 2013 i am incredibly proud of the company and my team for getting the data that proves that consumers actually can access and understand this information without a physician or without a medical professional we now have reports again that i am incredibly proud of my team for proving this with data that breast cancer the brocco study that i talked about as well as now pharmacogenetics the understanding of how your genome interacts with medications that all of this can be direct to direct to consumer so we now have six fda authorizations like you mentioned in the talk we have over 12 million customers um i’m really proud we are by far the largest health platform that is out there with recontactable customers um and what is exciting for me people ask where are you going with this company like what do you want to do

my dream is that i can get my customers to be healthier that we really do create this inflection point where people want to be in charge going back to that first question of who’s in charge of your health this information inspires people and it gives them a path it’s no longer about you know just generic information about you know eat better exercise don’t smoke but now it’s in the context of you have a higher risk of type 2 diabetes and you see it in your family and this is in your dna and there’s things you can do wow that’s such an inspiring empowering message for people and what we find is that our customers want to take that information and do more with it so i just want to end with that’s a question about who’s actually in charge of your health and while there’s so much happening in the world with digital health and with the rise of the customer i want to encourage everyone to think about are you actually the person that is in charge of those decisions and your data and all this information and do you know what’s going on in the background and to encourage you all to ask more questions so that you really can be in charge and with that i can’t wait to engage with jonathan and thank you so much that is an origin story for 23andme totally worthy of stan lee it’s got uh everything and um uh so let’s just jump right in um lab coat supremacy and uh you you mentioned the oh yes yeah no go on go on yes you mentioned the uh the fda authorizations that have been coming if you were on the other side of things say at the fda what would you have them do now would it just be if there’s a company that wants to recognize and document an association between a particular genotype and a particular phenotype an expression of it should they have to go to the fda at all to be licensed to i guess produce a report that says congratulations you have a g and that means such and such well it’s a very interesting question and very timely um we have um what we have found since our fda warning letter is that almost no other companies have gone through the fda and in fact what they’ve done is they’ve kind of taken advantage of this loophole where they have they put togeth what we call a dock in the box where there’s a doctor that’s sort of behind the scenes that you never interact with that you never see who’s writing the prescription for this service so you have the ability to get access to this information and it’s actually opened the door for a lot of um shadier types of reports and so i would i would say like is there a true association with vitamins and your genetics or you know people always want to know oh i should eat this kind of meal um so what part of what we try to do with our customers is teach them that just because something has been published once doesn’t mean that it’s true and i should give one example there’s a there’s a mutation called mthfr which our customers always ask about because it’s associated with a vitamin a folate vitamin and they would love to see us put out a report but we can’t we can’t get the data like there’s no data to support any of the claims so so we have not put it out but yet there’s demand for it so i think it’s really important actually the fda path requires that your data is really um meets an analytical criteria and that there is a scientific bar that you can’t just say like oh i found this association in 12 people in iceland and therefore i’m going to put it out to the masses so this sounds like you’re supportive of the fda playing a role they kind of do it once and then once it’s done for a given association they’re out of the way and you don’t need the doc in the box no i think that you need what we have done like every time we have a new set of reports for instance like our pharmacogenetic reports we had to go back to the fda and prove out that the analytical validity like proving out that we can accurately test what we’re testing but we also had to prove out user comprehension that to me is a really important point that no other companies have that you need to prove out that people actually are understanding it but if we’re making the right choices and it sounds like you’re like come on in everybody come join us in having to run everything by the fda like that’s the world you’d want i actually think that the fda has brought real value and i think that there’s you know i don’t always agree with everything and there’s there’s times where i can feel like it’s it’s um not moving as quickly as i’d love to see it but frankly right now i would actually love to see the fda be more aggressive because i worry about

some of the quality of reports that are out there outside of us so i think that with in the direct to consumer world it’s really important that there is actually real quality that people can trust and i think we live in a time where people don’t know what is fake news and what’s real and in terms of science i mean holy cow we’re seeing this right now with um with covid people don’t know what to trust so for me our brand like what’s what’s key is that i have respect by my customers and i have respect by the scientific community and part of that comes from the fact that we’ve proven this with the fda and and and again both sides now trust us now you started the company in an era in which gene patents were floating around and thought to be potentially legally valid uh that door has been mostly closed by the supreme court in the interim but potentially kicked open again by legislation that would restore the idea of gene patents to the patent statute and i’m curious if you have a thought on whether it’s okay to patent a gene we you know in some ways it’s it’s been um we were such strong proponents of not patenting genes um and so we were quite enthused when we saw that happen and and frankly you can see the harm of areas like the the breast cancer test when there was you know you couldn’t get access to it unless you went through the company that owned that patent so i think that we have we’re we’re supporters obviously we have a therapeutics business so we’re supporters of um method you know using like patenting the actual molecule and so that there you can develop a drug uh but but the genes it just seems totally um counter-intuitive for for a company especially like 23andme um to even think of patenting a gene well at the moment you can say and the supreme court agrees with you it’s good to know now i suppose the affordable care act gets struck down and there’s not an immediate amazing replacement ready to roll in two weeks um and we’re in a world whether in the united states or maybe in other jurisdictions where pre-existing conditions could mean that you wouldn’t get insurance or you pay a lot more for it what would you say to somebody nervous about discovering something that they could act upon maybe to try to mitigate or head out through um from 23andme but that also i guess would mean they’re filling out that insurance form and it says tell me what pre-existing conditions you have would that be a concern uh for a little knowledge being a dangerous thing for the consumer well then i would put it back to you so there’s the genetic information non-discrimination act known as gina which explicitly prevents insurance health insurance companies and employers from using genetic information to discriminate so what i would then argue you’re going to have you’re knowing your genetic information can be a risk factor but it’s not a pre-existing condition and that gina is is going to protect people from any kind of discrimination for their health insurance would you concur i’m not here to offer legal judgments but i would believe you are the professor jay-z as an academic i would absolutely think that uh it would be terrible to put people in a box where they might want to know something but once they know it it somehow taints them for what benefits they could expect to get in the insurance market it says at some point the insurance market is predicated on ignorance in order to spread risk because none of us knows if we’ll get sick and at the point that you really do know it it’s just social insurance rather than risk insurance i would say it’s part of where the system is really challenged because in your ideal world i want the people who are paying for my health care to know that i potentially have a risk factor for you know macular degeneration and going blind and a risk factor for diabetes or atrial fibrillation because i want my my provider to be thinking about what is the right kind of preventative care as well as what is the right kind of screening and i would say that’s one of the key issues in healthcare is that preventative care like most decisions are really based on whether or not there’s a three-year roi which means i’m only going to pay for you to get access to this kind of preventative means if i’m going to see some kind of benefit in the next three years but that’s actually awful because there’s a lot of these you know something like diabetes it’s it’s it’s a

it’s chronic so i want to i want to almost test people when they’re young so that they can have a lifetime of having a kind of behavior rather than changing your behavior at the last minute so that’s where i think that there’s a real issue and that so much of health care is based on your sort of three-year roi and in my dream you actually would have a healthcare insurance company that was using your genetic information to give you the best possible care and i guess it’s thought of specialized medicine of that sort is kind of the next big frontier uh for uh for medicine and for good care um yeah and it’s off it’s it’s open just sorry to cut you off but we know each other too well um now i what’s exciting with the world of digital care is that you can actually now have some of these some of these specialized services you could actually have a much easier kind of digital consult about how to use this and the world is blown open of you know what are the behavior therapies i want to use on my phone uh i was struck by your mention of facebook and uh others who the data just spreads everywhere and you mentioned latonya sweeney’s study of healthcare data going everywhere there’s also the narrower model some might call it threat model of law enforcement or intelligence access to third party records how do you think through now having had kind of years to think it through an experience with it what happens when that magic subpoena arrives at the doorstep and says you know we’d like to have you tell us if anything matching the following dna sequences in your database and if so tell us all about who that is or even uh peer-to-peer people using uh 23andme to find um sperm donors or misattributed paternity or something like that um how do you think all that stuff through we we’ve been very clear about law enforcement from day one and in the early days it was actually very helpful we had one of our science advisors who who thought he kind of came up as an idea he’s like oh you know really ex like we could have this exciting business of um you know america’s most wanted could be amazing and we kind of sat back we’re like that’s a different company that’s not us and i think we’ve everything that we’ve set up as we’ve done our our um our privacy practice and our consents has been about this is for an individual to use and the privacy is yours and we are not going to share information with law enforcement so we have a transparency report i would encourage people to look at it we have never given information to law enforcement and fundamentally it’s so key um for the success of our business that it’s hard to imagine we would not fight pretty tooth and nail um if there was a subpoena that came our way but we have never had anything that has um that has even come close gosh so it’s been don’t ask don’t count say again so far it’s been don’t ask don’t tell well there’s other companies also where you know there’s there’s another company that’s out there that’s been very clear that they actually want to kind of take on the the crime path so in some ways if if people want to explore that option it’s not us and it has nothing to do with the health and it’s not it’s not the world and 23andme has been very clear that our definition of privacy and actually frankly it was a lot of colleagues of yours who helped us define privacy in those early days where it was you know it was brad templeton who at eff who had sat me down who had said the definition of privacy does not mean i don’t want to have my data go anywhere it’s that i want to have choice and i want transparency like the two key themes of 23andme and so for us it has always been that we’re going to give you that choice we’ll allow you to share it when you want but we’re not going to give your information out otherwise the question you have about sperm donors and family members is it totally different and the reality there is that you absolutely can find people um that you did not expect to so one of the one of the the consents that is really important that we have is people who have to opt in to dna relatives so it’s not something that we again our consent form is is is comp is long and um there’s many different areas for people to opt into and we remind people about it but dna relatives is explicitly something else that you have to opt into to say do you want to find additional relatives and people do and often times you know our family the wagiskis were one never expected that i was going to find family members and lo and behold one day my mom called and she was like i think i found um you know i think my brother had a baby

and and so it turns out i have a first cousin that we found on 23andme and it is i have to just tell people it is remarkably common and um and i think it’s overwhelmingly you obviously have stories of people where it’s it’s um there’s stress but overwhelmingly people um have connected to new family and forged uh a sense of identity and belonging that they did not have before so at this point and as you um might guess i’m drawing from some of the many questions piling up in the q a thing to put these i appreciate those who are putting in questions at this point you’ve got like a really big database of people’s dna and uh snips of same and of their answers to survey questions that prior to 23 and me and its sibling companies i imagine to just run a study trying to figure out if there’s a correlation between a particular genetic sequence and a particular outcome would be a really big deal and now i mean as a 23andme subscriber i’ll sometimes get an email that’s like you know does lemon juice dribble out of the left side of your mouth sometimes and i’m like you know as a matter of fact it does it’s like thanks you’re helping science and then you can find the gene for that quote unquote and i i’m just wondering what you see both is the future of that if we fast forward 10 or 20 years and the extent to which that accumulated data is sort of a public good or is that sort of among the crown jewels of 23 and me you went to the trouble of getting ready to spit that’s 23s and me’s we both very good questions i um you know what was interesting for me again when i worked when i worked in finance in watching companies set up a research study and then take it down and then set it up and take it down and again i grew up on stanford campus so i i’m close friends with many academics and the process of recruiting people for your study and then you write the grant and a grant alone is going to take you years to get and then it just it was it’s just it’s agonizing it’s so painfully slow so in a world where um you know we’re used to typing in something online and getting an immediate search result and you know think like most people on this call probably can’t even remember like if you in the old days if you wanted to find a hotel in egypt you had to go to the travel agent and look at a book and find it call it was awful um and that’s kind of what healthcare is like now like i mean it’s it’s so injured when i would bike to work in the morning and i would see on the again and i would bike past google and on the way on the on the light post there would be little signs with like rip off my you know do you want to participate in a clinical trial rip off here so it’s clearly not an efficient system and so the idea with 23andme was really i could get millions and millions of people who are consented who have their genetic information who just take lots of studies and um and then we can ask questions on an ongoing basis but there’s no startup cost and no breakdown cost and so an example of how we were able to do this incredibly well was with covid19 where i have 12 million customers 80 of them are consented for research i on april 6 i put out a survey about covid19 and i got over a million people to take the survey and over 25 000 people who said that they um had covered thousands more that were hospitalized very quickly then we could analyze the data and we could put it in a pre-print so so very quickly i contributed to the body of knowledge in the world about how we can actually have an impact here so i think that’s an example of how we can do it that really impacted everyone but in some ways i can do that in all kinds of different areas whether it’s migraines if it’s crohn’s disease alzheimer’s like all kinds of areas i just need to find the time to engage people so we absolutely do feel like one of the the key elements of 23andme is the research side it’s like our ability to make incredibly meaningful discoveries so it’s not it’s absolutely not um 23andme that um obviously it’s a 23andme community but we partner all the time with academics to make research discoveries and in the early days the the the onus was on us to publish and prove out that the platform worked and now that it’s proven that the platform works so mostly what we do is we we choose partners and we constantly publish but we let other academics publish so we have over 150 papers now we’re constantly fielding requests of people who want to get access to the

information again in a way that is again it’s aggregated it’s it’s respecting people’s privacy uh here’s a great question uh is there anything that you could imagine someone learning through this kind of process of research with the database that would prove out that would be an accurate association of some particular genotype with some particular phenotype that you would think it’s a question that ought not to be asked is there anything we shouldn’t learn that might be learnable collectively yeah i think um you know in general um you would have to first ask the questions that are controversial um michael spector wrote a great article in the new yorker years and years ago about beijing genome institute and they were doing lots of um studies on intelligence and that for us is very clear like it’s not an area where we’re asking questions we’re not doing research there so we do have a very active um you know uh you know ethical legal social you know it’s actually like this to me is an area it’s a difference between the tech world like there is an ethical legal social world that we’re super engaged with and um joanna mountain who was one of our first employees she leads up we have um irb approval for our studies institutional review board so it’s something that i i think a lot about like we’re we’re really actively engaged in what is that ethics and again i would push just a little especially because of you with your background um you know i did a podcast for one of the big tech companies at one point and i mentioned the ethical legal social and they actually edited the part of the podcast because they’re like oh no ms wojcicki was wrong there’s no such thing as the ethical legal social world it’s called i forgot they put some other word and i was like no let me tell you i have spent a lot of time with ethical legal social like here’s the nih link here’s the world but it’s it’s really important like how this data is going to be used and what is that benefit and this is an example where it’s really important to solicit input from our customers from the academic world from peers and understand like how are we going to move this forward in the best best way and absolutely feel strongly like other companies need to have a an ethical legal social review of their own uh going back to those origins anything you do differently um had a do-over that is so you know i just i was just having lunch with my kids before this and i was telling them all kinds of stories about the company they were asking almost the same question um you know i think that um you know i i don’t i think in some ways i almost would have just run faster when you’re um when you’re a startup and in those early days you can get just so much done before you know we there’s we’re now like we have a brand and we’re we’re known and there’s something that’s amazing when you’re not known like going under pro under the um you know going low profile has has real benefits and i think about like there’s one very tangible thing for instance um 23andme can detect white blood cells in um from our customers in their saliva and we could actually detect a mutation called jack two and jack two is associated with milo proliferative neoplasm which is a form of cancer and um we were just about to put out that report when we got our fda warning letter and i had held back because i wanted um i wanted i didn’t like the design enough that’s my only real regret i wish i’d put that report out uh-huh and it’s out now no oh interesting yeah and i think we got it out before the boom lowered and then it would have been a done deal and now you’ve gotta do all of the fascinating yeah and it’s um and i think about because i can i know you know i know a number of people where you know it would be really meaningful to to actually get that kind of information so um you know i think it’s like i said the there’s a beauty in being a startup that you can um break things yeah yeah and i like i said we always broke things with the context of um the ethical legal social review with us and even i’m asked every year by the stanford community

um did 23 of me get their warning letter because of silicon valley arrogance or was it just incompetence and the first year everyone rose their hand and they’re like yeah no it was silicon valley arrogance and i was like no no no people like it was it was really incompetence like we just like we were speaking the wrong language like it was definitely not a lack of of effort of of trying um so for us we’ve always wanted to move fast but with the the the perspective that like this is customers information like it’s real like real stories oddly enough in that case the jack to report is a customized report that’s the product that would require the review if there’s just a paper out there that makes the association and it says that what part of the genome what particular sequence is uh indicative of the um change of the mutation i guess there’s nothing to stop me from going into my 23andme data and just asking it what’s at that location well it’s a little bit more complicated because it’s not part of um again this is a this is a mutation that you develop over time okay so it’s it’s a whole different world so what what was one of the things that was interesting um that we started to see is that you can actually start to detect chromosomal abnormalities and these abnormalities are almost linear with age like as you get older you get more of these chromosomal abnormalities and so being able to identify them and then validate them to an fda standard so you know there’s doesn’t the reality for me with 23andme there’s a lot more that can happen and um you know covid19 is an example where it’s obvious it’s a tragedy but it is absolutely forced forward a lot of the policy decisions that we needed to have a different kind of world and there’s a real opportunity for the 23b platform to offer a lot more and you know part of it is um you know the digital health space but absolutely part of it is you know additional technologies like would you ever start to do any of these other types of um you know dna analyses well that actually teeds up the last uh question from our um quite substantial crowd uh there’s at least one paper out in which the 23andme covid19 team participated and knowing only enough to be dangerous i read the abstract um and i’m just trying to parse this sentence while non-european ancestry was found to be a significant risk factor for hospitalization after adjusting for sociodemographics and pre-existing health conditions comma we did not find evidence that these two primary genetic associations explain differences between populations in terms of risk for severe outcomes i feel like the second clause took away all those interesting things the first clause now if i understand it right and again this is where i’m sort of in your boat like i could i could pull up my scientists um we definitely we found these associations um but essentially that if you we still see that um there are differences in hospitalization with uh i believe it’s the african-american population and the latin american population and so even if we adjust for all other factors in looking at those two there’s still something else that’s there and i think for me part of it is that that line specifically indicates that we should keep looking because these two the mutations that we found in the o blood type does not necessarily account for um the reasons in these different populations why they’re still disproportionately affected so we should keep looking which is why we actually we’ve been actively reaching out to other academic groups about finding more hospitalized patients well as you say uh the work has really only just begun with humans and beyond i’m waiting for 39 and canine so that uh soon dude there’s actually like i said we we actually had our 30 you remember this from the early days we had our 39 and k9 products for dogs but um there’s actually a great company that we have always talked about working with called embark that um that we are not we’re not working with now but they i have a lot of respect for their science so they do your dog so you could absolutely um get get your get your little canines great title too yeah thank you so much a pleasure chatting uh truly just scratching the surface but finding so much uh even there and uh tamiko back to you for your concluding remarks and uh thanks as well what a pleasure so much fun thank you so much ann and thank you again jonathan and of course thanks to everyone watching for being here this afternoon and for your questions our next science program the future of covet 19 epidemiology

is coming up on tuesday december 8th and i hope you will join us you can find more information about that and other upcoming programs at radcliffe.harvard.edu have a nice evening