« Freakonomics Radio

378. 23andMe (and You, and Everyone Else)

2019-05-16 | 🔗

The revolution in home DNA testing is giving consumers important, possibly life-changing information. It’s also building a gigantic database that could lead to medical breakthroughs. But how will you deal with upsetting news? What if your privacy is compromised? And are you prepared to have your DNA monetized? We speak with Anne Wojcicki, founder and C.E.O. of 23andMe.

This is an unofficial transcript meant for reference. Accuracy is not guaranteed.
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If you like, to listen to freak animals, radio without ads the place to do that is still premium five dollars a month and you can get a free month trial by going to stick your premium dot com and use a promo code freak. You also get access to all our bonus. Episodes and you'll be supporting our show to that still premium dot com promo code. Greek banks into doesn't and eighteen police Sacramento California arrested a man who had been eluding them for decades. The goldens killer. As he'd been known, was responsible more than a dozen murders and fifty rapes. This more new details of the rigorous investigation that detective say brought down the golden state killer more than forty years after his alleged killings, re began, detectives had loaded, a dna samples from the suspect to an open
worse website called Jed match the site provides in its words in a Ingenio, logical analysis, tools for amateur and professional researchers and genealogist. We ve just learn from multiple law enforcement sources that investigators use genealogy websites to help link deejay low to what was previously the unknown mystery dna of the attackers Jed match lit anyone upload raw DNA data from home, genetics testing companies like twenty three in me and ancestry, dot com, it turned out that at least twenty four relatives of the suspect were included in the jet match database, the police by cross referencing, the suspects DNA Data against census, data and cemetery records were able to confirm that they had the right guy.
Please say the seventy two year old appeared surprised when they swarmed his home Tuesday evening more than one hundred pages of heavily rejected core documents read like a real life csi, revealing that a dna sample recover this April, sealed the case against him, how our workable is down, but a bunch of civilians just looking to fill out their family trees had certainly crowd sourced the capture of a murder, but not everybody saw as remarkable in just that way. I am but just gay- and I am the co founder in C of twenty three in me. Three in me has become world famous for their mail in DNA. Spit kit use them some saliva and for ninety nine dollars, they'll, send you an ancestry profile and for another hundred dollars a lot of health information from your purported risk of various diseases to weather, should be able to detect the smell of asparagus in your urine, but
the beginning. We just he says she was hypersensitive about how and where the personal data of twenty three may customers would be used in our consent front? We speak ethically thought about like how do we make sure that we're not set up for crime and uniform further We need a common used, as one story we read about recently was how the chinese government has been using dna testing, much of it, driven by technology, data from the? U S to enforce what some human rights advocates sees discrimination against racial groups like the wiggers does is, me three and me think about or participate in some kind of international regulatory structure. To ensure that kind of data is not used for them. Crimination, depression, etc. Since there, early days of the company. There's a group called the call legal social community that has actively follow twenty. bring me and what we're doing and what the consequences are. So, what's interesting as like people often compared to the test,
well, what's happening now, there's a big difference because there's really ban an ethical, legal, social group following Google and Facebook and others, but we ve always been hounded by this group and and frankly, I'm great. Well to them now, because I think that we prevent data by a lot of dino. But what what's coming in things like the golden state killer? If you think the arrest of the golden steak It represents a revolutionary use of personal dna. Just wait because the revolution is only just beginning today, can I radio what the revenue looks like from inside twenty three in me, I think have a long way to go here and from the user end. and in the middle of the night, sometimes ask myself. This question, who am I, who am I Now that I know the truth,
from stature and Gunnar productions. This is pre economics. Radio broadcasts explores the inside of everything. Here's your home. Stephen governor, and would you squeeze own family tree is pretty impressive. She's, the youngest of three daughters born to Stanley would just be an american professor of Physics at Stanford and Esther, which escape a journalist and beloved educator, whose one many awards Esther recently published a book called how to raise successful people, one of their daughters, JANET is a globe trotting anthropologist and epidemiologists Here's an again she's living in Japan. Now she's studies in rwanda- I you know in Rural Alaska and then there's you tube, come on. Don't worry about you tube sister she's, interesting
I love her too. Susan would just keep the eldest sister he's the ceo of you too, which is owned by Google. She was Google's first marketing manager, sixteenth, employee, the overall Google connection predates employment when the company was just getting started, Susan just you rented out part of her house to Google Founders Larry Page and Sergei Bryn. The Google would just key link expanded when sister s just be shortly after founding twenty three me married Sergei Bryn. They had two kids and divorced eight years later in two thousand fifteen, an which is Forty five years old went to college at Yale where she majored in biology and played varsity ice hockey after graduating joint work in finance, primarily as healthcare analysed for investment funds, her focus was on biotech firms. Walter
Was my like really in depth. Look at the healthcare system in how it works, and I started to realize that if I was a healthy, honey you're old? If I was never diabetic, I never had heart disease. I never had you know walking issues. I not generating money for the healthcare system There's not a money making opportunity in saying I'm gonna solve how to keep you healthy, ski realised that the? U S, healthcare system and its investors were really good at monetizing illness. What about wellness not so profitable? The problem is that the payment system is set up, that you pay for treatments of conditions, but you don't pay for ongoing health. If I stay healthy, like no one The cares ex for me, the consumer voice was really not represented, and it's a shame that there is now
really a business model in place. Say. I'm gonna reward you for for keeping you healthier I read that Larry Page one of the co founders of Google told you that even Oh! You are doing this, you know pretty interesting good work on Wall Street that you are really part of the problem is not the solution. Without really How true is that, so that a really big push for you deciding a I'm gonna get out of this business of profit, from this kind of Miss aligned healthcare system in instead try to start accompany it does something different work by the end of Vito, my tenure and Walter after ten years I was sort of in this very cynical place of like you know, my sister would give a talk she does work on obesity and she would give a talk about obesity in the coming crisis and how it's gonna be in Dutch. Until to society- and I would give the corollary talk. That's like obesity, the ultimate money can opportunity. You not say oh obesity in China, you know like these new born just gonna. You know get sick
die right away. It's you know. Twenty years of heart, disease diabetes is in that and people would look at me. I was evil and no, I'm just reflective of how the system thinks, and so I was becoming really cynical. Like look this system, it is meant for making me the sick people and it was at that point. I would brainstorm with people like what can we do? We need a revolution, so I would compare in a lot- and I think one day- Larry was tired of me complaining and was just like, and is Railway was like you're either part of the solution. You part of the problem, and it sounds like you're part of the problem right now, and you know it wasn't the only motivating factor, but it's you know it's a good reminder in two thousand six would just key cofounded twenty three in me with the biologist Linda AV and the entrepreneur Paul Cosenza. It was when the first direct consumer personal genomics companies since then a few
dna testing kit services have come to market. The MIT technology review predicts that by twenty twenty one more than a hundred million people will be part of commercial genetic databases. Lotta people are just in it for the family connections, that's the main appeal of the biggest player in. Three dot com, but twenty three in me has from the outset also offered the option of personalized health report. Its saliva test. Remember not a blood test, it doesn't diagnose disease. Instead, it purports to link your genetic make up two potential. For certain diseases and the likelihood of other trades, with five million customers who ve bought the health report? twenty three in me- has the world's largest database of genetic information for medical research and that, as well here today comes with a lot of complications
Twenty three me was starting out. Their health reports were not approved by the FDA, we'll just getting think they needed the approval by the FDA agreed in November of two thousand thirteen. We got a warning letter from the FDA Federal law states that any kit intended to cure mitigate treat prevent diagnosis, disease is a medical device that needs to be declared safe by the FDA. We didn't believe at that time that we were a medical device and this day? You know a lot of what we do is very different than traditional medical devices, so it became abundantly clear. He know with our warning letter like there's no more debates, we are medical device. And what we were asked to do was to stop returning health information. We could continue returning raw data and we could. can you returning ancestry information, but we had to stop interpreting the health information for a.
Mars, and we had to go through and after a process and what was the response Your building to that letter that must have felt like a punch in the gut. It was more like wow onus is really on us? They we own the responsibility to prove to the FDA that this is actually a responsible company and product, so we went through you know methodically trying to go and get approvals for our past reports, and it was hard work. But if the FDA wants data like while we're good at generating data and so will prove it Frankly, I am grateful to the FDA that when I buy a product, I have a high confidence that it safe. So as much as I was upset about this, I am also respectful of the position that there, in that they have a job to monitor public safety into them.
seventeen. The FDA gave twenty three me permission to send their customers genetic risk reports for ten ailments or conditions, including breast, and over. In Cancer Celia Disease, Lee Onset, Alzheimer's Disease and Parkinson's disease. Here's what the agency said at the time. These are the first direct consumer tests authorized by the FDA, which may help to make decisions about lifestyle choices or to inform discussions with healthcare professionals for really trying to make a constructive difference in the healthcare space. and I'm using all that information. I had to empower the customer power all of us to take charge and make a difference and actually like be healthy rate soon I pursuing a vision that is about solution and that doesn't monetize illness. You started company that's now
Oh valued, somewhere around between two and three billion dollars. Is that about roughly rate, you know it's kind of the least at my worries. evaluations are always important, but to me the ultimate financial success when I can point to like hey like twenty People didn't die in their forties because of me, then I feel like yeah that's worth bragging about. I mean the irony, those that you have successfully monetize v. I don't know exactly what to call the curiosity about or the pursuit wellness and were connection. I think I actually does. One thing that drive me crazy in healthcare is that there is always this assumption that you and I, the individuals, the lay people than Non Phds, the non mds that we are incapable of taking care of ourselves, and I think people when they are sick or their given the opportunity like they actually want to step up they just need that advice. They need the information
the majority of people who are thinking about getting pregnant, don't necessarily get carrier status screening before the pregnancy. But if I walk into my doctor- and I say: hey, I'm thinking of having children and I'm a carrier for cystic fibrosis and my partners, a carrier for this mutation- that's a helpful dialogue, so we potentially fill in clues that would have otherwise come up and you feel that physicians and medical providers or taking information in the spirit that you intend it. Why? I think we have a long way to go here. We ve put a fair amount of resources in the last couple years in terms of outreach to, key providers. The next phase of this company is specifically about helping people take She with this genetic information and also helping the medical care The value consumers coming with their genetic information, the thing I'm most proud of
that we have shown that you can get this information on your own, truly director consumer without physician and without agenda counselor, and I as a monumental step for the customer for the individual and the realities, Avc. person has no less than ten minutes with their doctor. This is an opportunity for people to educate themselves in a way that best suits them I'm a doctor or the AMA hearing. You say that I shudder a little bit, though, because most doctors. I know most literature. I've read on. It says that one of the biggest problem that the medical profession has now is people coming in within. For me, Smith, often incomplete or wrong, so persuade me there you defend that position because it's the right position and not just because you ve chosen for your firm to go. The route of direct consumer, rather than with
physician or genetic counselling contact. Will I think that the consumer today often doesn't have a relationship with a primary care provider, so I do think that there is a responsibility for the consumer to get educate. To have information to keep track of it. So, as you spoke, you made the assumption like will. Some of the information is incomplete or wrong make we just went through the FDA process, we prove the information we have is valuable and its correct. There are a couple important caveats to consider here any other personal genomics. Companies do require some sort of physician approval or genetic counselling to ensure that customers don't misinformed the risk information or perhaps make poor decisions based on also, even though a twenty three in me risk report is definitively not a diagnosis. You
imagine a learning A risk can carry some costs. In addition to the better, It sounds as though you believe in the upside of knowing as much as you can as early as you can, but I'm guessing can also empathize with those people who think that wow, you know just having that way. heard in my head, Parkinson's or Alzheimer's, my exact a cost. It might not alive. Me to live my life to the fullest. I think this is where I go to that that whole choice again too much of health care is forced on us. I think that health care should empower people with more choice. and it's like when the court tenants, though we have as I, if you want to know your Alzheimer's results, you absolute it should not know them, and that's your choice and soothed. That's why we actually Do you have an additional layer of consent on top of Parkinson's Alzheimer's breast cancer? we want to make sure that our customers are never shock.
In surprise, two years after twenty three in me, was cleared by the FDA to deliver those ten risk reports? It launched a new health report for type two diabetes when the most common diseases in the world. Recent CDC study estimate that roughly forty percent of the adult- U s- Population- is expected to develop diabetes during their lifetime. It's the seventh leading cause of death in the ass. The twenty three in me risk report for diabetes is particularly interesting in that it was developed exclusively using twenty three in me. Customer data more than tune half a million customers who consented to participate. It also, a new method of detecting disease risk, one of the most interesting things- that's come up scientifically over the last decade. Is these what's called Polly JANET risk, ores So not looking at just one gene Disease, but looking at thousands
or even millions of small effect sizes and adding all those up to see wow, this really adds up to a risk factor for people, and we feel like this the lot of the direction where health care is going to go is in these Polly JANET risk horse. You might have expected that a new diabetes risk test would generate a lot of enthuse, as I am, but much of the immediate response was critical. Polly genetic risk scores work best for people of the same ethnic background as those who provided the data. That goes into the risk Algorithm in twenty three means database is overwhelmingly composed of people of european descent. Diabetes is in sight, a significant threat for African Americans and art, in Wired argued that the new twenty three me diabetes risk test is tune to be most useful for skinny white people,
So let me ask you this: I knew your database is pretty european heavy and some people think its weight to wait, but you know it's also voluntary, so I dont know what kind of diversity are trying to encourage. But let me just ask about one point killer element of that question. As I sure you well know, there's a really long and terrible history in this country of African Americans being exploited by the medical system, the stories are just truly horrifying. And the data show that African Americans today are still much less likely to participate in the health care system, whether that's a direct cause or not. Who knows but- and that's got us please downside! So are we seeing that same reluctance? Now you think, among you, know the african american population, maybe other populations it there's just ask.
This is the idea of putting their dna into a database like this is too you NOME frightening, and if that's true what are we the universe missing out on by not having the sample is representative, as we might like yeah The great question so, first INA we have twenty percent, roughly of Customers are non european, so while that's a small percent that set on our size in scale, it is the largest such community, out there, so were actually really able to do a lot of research on different communities. That said, I am absolutely empathetic to some of these communities that have been poorly it. Secondly, we're doing a lot to try and improve relationships there, and so we act. have a global genetic diversity project where we are recruiting individuals from specific country.
Is like Tanzania and Cameroon Chad. So we have a bunch of countries where were actually offering INA free testing for people to come in and part of the reason why we do that as the more people who come from those communities, then we can actually develop the reports to be representative of all people. relations so building risk test it useful for as many people as possible. That's one challenge, but these and other big challenge, perhaps far greater when it MR dispensing personalized health risk reports. How do you transit The knowledge of risk into action how do you ensure that someone who learned their risk for some major disease actually does anything about it other than worry or get depressed?
We have a lot of information on the site in terms of like water resources, for you, so that people look at this and they at least know where to go were actively now looking at programmes of ways to help people better understand, food and behaviour, and our first step with that was as partnership. We have with lark its ai, I coaching and is trying to help people change their behaviors, and I That's suited the next generation of what's coming so give me whatever evidence or may be there learning about an increased risk via twenty three me or some other genetic tests actually leads to changes in individual behaviour. Will we actually did a study with Robert Green at Harvard and he looked at our saturated fat report and he was looking at what people want to do with this information and he found that. I think it was even at six months over forty percent of our customers, whether they had an increased risk of being overweight
from saturate fat or not, they were looking to make changes to their yet what does that mean looking to make change like and that with sustainable at six months, like doing it looking to to do it, what what we find is out like a lot of people, don't know like what is saturated fat will. What do I do? People gotta a resolved or they get carrier status information they write into us and they tell us what they are doing: customers all over the world that I in that meeting and telling. about what they learned and how they changed. The study that would just be cited, Robert Green of Harvard, was one of several co authors. It's not quite persuasive, as one might hope. It's called diet and exercise changes following to consumer personal genomics testing, and it involves an online survey of about a thousand users of twenty three me and another personal genetics company first walking
find something we ve said on the show many many times self reported data are not necessarily the most robust data and I'm putting that kindly. This survey asked people about their diet and exercise habits just before they receive their health risk reports and again, six months later, the studies There's right, although nearly a third of participants reported making die an exercise, changes that were directly motivated by their personal genomics testing results. There was no consistent evidence that specific genetic risk information received from personal genomics, testing were associated with the specific diet and exercise variables that we measured.
In other words, maybe people who sign up for a genetic risk report are the kind of people who are already motivated to make a change and getting the risk report may be a consequence of that change not cause. We found another study suggesting this explanation. a b, the true one so I am looking at twenty. Sixteen British Medical Journal report about whether genetic testing lead people to alter their life's thousand behaviors and in it finds. Basically, it doesn't says quote: expectations have been hiding giving people Mason about their genetic risk will empower them to change their behaviour, to eat more healthily or to stop smoking. Friction But we have found no evidence that this is the case. So we know behavior change is really hard and just curious. I guess about holistically overall confidence that the formation will actually be a net gain. I throw the Larry page,
back at you I, if you're really that day. On humanity, that you don't think people can change their behaviors and there's no way of getting them to change their behaviors. It's a really sad outlook and I believe that there is a way to do that and we just haven't figured out the right way and I look at a loss. Out of these cognitive behaviour tools that are online that are working like honestly. You look at the diabetes, prevention programme that Sir in the early two thousands and that that was better than most drug therapies out there. So there are ways to get points. or to change their behaviour. I'm really optimistic about the better. two of the internet. I think it's a sad state that The majority of the medical world has essentially resign themselves that people who are not willing to change, and I'm a believer in humanity that people given the right tools. I think people will step up
I am so optimistic about your optimism and amber generally very much an optimist as well, but the only thing I would say on this point in particular in terms of especially personal health, is that, We do have a lot of data in the modern era when the risk factors to personal health have been really pronounced in part by the abundance and cheapness of low grade food, and the ability to be really sedentary and what we see is that, even though we have known for quite a long time now, what a good diet looks like what good sleep looks like the dangers of smoking. The benefits of exercise set her tender. The vast majority of people are now able to commit themselves to that routine even though the knowledge is there and it speaks. I think, too, you know a lot of things that are complicated back The means things that are pleasurable really hard to constrain, and I just wonder
maybe you know the issues it? The people like you who are incredibly accomplish and intelligent, but also disciplined Maybe I assume that the rest of us are disciplined as you are and whether that's sorted disconnect I base more of this experience and even a lot of my customers, like customers or over the world that I in that meeting or people who you know our doing my hair for a talkin and telling me but what they learned and how they ve changed. I think the one thing to recognise like- is absolutely hard. It's much easier to say: here's a pill, your high risk protected. These are your pre diabetic. Here's met foreman like take a pill and be done its harder to change behaviour and, and that's a hundred percent, but it doesn't mean it's impossible. and there's something about your dna of getting something that black and white that like while we should potentially really take this seriously.
Coming up after a quick break, the clock is always ticking for somebody with a fatal illness that can be maddening just gave you my data, do something financed radio sponsored by Petsmart Petsmart makes it safe and easy for you to care for your pet at Petsmart. The health and safety of employees, pet parents and pets are its most important, which is why they require face coverings. Social distancing and stop plexiglas shields and enhanced cleaning to follow CDC recommendations for contact list. Thing just order online at Petsmart, not com or on the Petsmart, app Joy, easy curbside, pick up for same day, delivery powered by door dash free through January thirty. First, two thousand twenty one check out: Petsmart dot com for more details.
In Just is ceo and CO founder of the Personal Genetics testing company, twenty three in me, it provides for a fee of ninety nine dollars, a wealth of information about your ancestry and one hundred ninety nine dollars an additional report on your health characteristics enriched The company has about ten million total customers slightly more than half of whom, by the full ancestry plus health report, but those are one time fees is that enough justified the company's valuation of several billion dollars. Here's another! way to look at it. Me three in me, charges people a couple hundred dollars to supply individual genetic information which, when aggregated with millions of other people, creed, the database. That may have massive implications for the future of health care and for the financial future of twenty three in May last year,
the british pharmaceutical firm Glaxosmithkline made it through hundred million dollar investment in twenty three me in exchange for the rights to use genetic data for drug discovery. In addition, Two JFK twenty three in me partnered with or taken investments from Pfizer Genetic Procter and gamble. well as several non industry partners, including universities and institutes? So let's start with just what you're trying to accomplish in these cases and how your data gets put to use, or maybe say how our data collectively gets put to use yet wondering I always found interesting when I was on Wall Street is that people would consent to be part of research. And then they find out that nothing had happened to their sample What do you mean? Nothing had happened to their sent like they were disappointed that nothing happened, so cancer patients, for instance, consent to a study at Harvard friend, Sensor Stanford.
And then they find out that their samples, just sitting in a and for somebody with a fatal illness that can be maddening like I just gave you my data. Do something in the early days of twenty three in me would just be says. They recruited a community of sarcoma patients to share their genetic data with the hopes of advancing research. Sarcoma is one of those diseases that the very diverse its poorly understood. You know it's hard for any one centre: who have enough patience to do big research projects. We had all these people come in and we talked about different ways where energy research and you know, concern and we're getting their feedback. I remember, though, I'm looking at me should I can I'm gonna die in the next twelve months. Like stop asking me, do something meaningful. That's either gonna have
impact on me we're going to have an impact on my children, and I think about that all the time when I look at academia there's a lot of fiefdoms. You know, like it's hard for one centre on the EAST coast, to share samples with another centre on the West Coast and it became almost insulting to me like I want to do more, and so twenty three me as a platform essentially for people to say I want my data to be used broadly in research and frankly, farmer companies or the companies that are discovering treatments for diseases. Twain through me over a hundred fifty publications that we have done and we ve done hundreds of studies, almost every disease has representation. So we have over nineteen thousand people with Parkinson's. We have over a million people who are genetically high rest for all seiners. Eight hundred thousand people with heart disease over ten thousand people of color rectal cancer, seven hundred fifty thousand
but with depression. So massive numbers were trying to allow individuals to have an impact on the research world in discoveries and improve. You know this state of health care for all, are these the largest such numbers in the world? By far there should, a more media outcry that I'm not doing enough frankly, cynic might have a different complain. Cynic might say that an would just keep, tells and origins story about twenty. Three me that's based on her discussed how Wall Street monetize illness, but that the firm she bill uses consumer data to partner with pharmaceutical companies in order to monetize illness when we asked listeners of our show what they most wanted to hear about when it comes to home dna testing, a majority dealt with privacy, the private
concern was one that we hear law and an and another is is frankly its profit. So the ideas like wait, a minute, I'm paying twenty three me for a kick in the test in the results, a hundred bucks for just ancestry, your or two hundred for healthy ancestry, so I'm paying for the service. then I read that twenty three in me uses my genetic data to make commercial deals with pharmaceutical companies or saw it, and then I start to think. Well, ok, up today, and I understand that I really like the idea of advancing science, but shouldn't
you be paying me for that, instead of me, paying you cause. My data is worth a lot more to you, then. Maybe it is to me right so that the most important thing I found from customers is that they want to see the results there, not interested in, like a fifty dollar check. I think. Secondly, like we're not a profitable company, we are doing all kinds of research deals. have our own drug discovery team. We are also investing a lot in researching prevention, so the theoretical funding of, like, oh all, this money coming and is not there that sad were really emitted, and I think this is something that we think about quite a bit in the long term when we do have a successful therapeutic on the market,
or I do have a successful way of preventing a condition. But how do I give back to my customers and that's ten years out so at this stage? The most important thing I can do is give people a sense of pride of what they have done and say here's the papers that you ve been part of here's the contribution that you ve had, and I think that, as we develop their pewter ex, when that theoretical you know cashflow can com will have to think about what sat right way there. The customers feel like they ve benefit, and you know what the first one or two therapeutics will be having the one thing I learned from biotech is that you at this stage you never know we have thirteen fourteen compounds in research stage and in development
I am hopeful that we will be in humans and in the coming years and its diverse from Munich cancer to asthma, heart disease- and you know we have this big partnership with JFK and what was great there is that we needed a pie. The nurse who could help us scale. If I know that I have a genetic discovery and I'm sitting on it, like my cut Where's should be angry at me. I should do whatever I can to try to develop those sooner, and so that was the beauty. Jfk really helps us scale. How does twenty three me? pact. A customer's privacy. Generally, I mean to privacy, is a its is key to the company certain terms of like internet security. We do everything we in recognising that there's always limits. We try to be very real people. When your online there's always a risk, but we do everything we can to show from engineering infrastructure and data security were doing every we can there has twenty three in me.
ever been substantially hacked. Now, I'm really proud of the team. We had a lot of our core engineers in the early days came from banking, and you know I love saying I love your dna is beautiful, but what I rather see your dna or your bank account. So there is a lot to learn from the banking industry. Thing that we have really tried to pioneer, is sharing options so, for instance, right now in hip. Ah, you know it's really super restrictive and, I would say its harmful a lot of the ways hippo functions. It prevents any kind beneficial sharing and what twenty three me has tried to pioneer is saying: I'm giving you options the thinking dont understand about. Privacy is what privacy means is choice is that I want the choice of saying I have often in, and I want, the choice of opting
now. Let's say I want to opt into all those things, but I am also concerned that my data non aggregated, Non Anonymize data may somehow end up in the and of one day, a healthcare company or ensure or an employer, present or future or a future partner or spouse. So we explicitly say we never share your individual level data without your explicit consent. So unless you have explicitly all of us. We can share your individual level data. We are never going to when someone decides to take home dna test, whether for the health risk profile or just for ancestry purposes, there's one huge variable that is perhaps impossible to prepare for how the information contained therein will affect you and the people you know, and perhaps people guitar
no, what say the seventy two year old appeared surprised when they swarmed his home Tuesday evening. A very public outcome, like the capture of the golden state killer, may be rare, at least for now. it's more common are the revelations that can reverberate within a given family in two thousand and ten. When but just ski, was still married to Sergei Bryn. One of the founders of Google Bryn took a twenty three in me. Tat. And learned he had a genetic mutations associate with higher rates of Parkinson's disease. It's an interesting story because it was recommended to us that there is no reason to test, because it was so unlikely that he would ever have it and so right there it's a kind of any ample word: the medical community was like don't bother getting the information, there's no reason, in what would you do if you did have it? So you know the convenience of having agent attesting company is like us like
Do my me will put that mutation on our chip, and so we were able to for it, and I remember the moment sitting in the kitchen and be like hold on a second like. I think your mom, like she's too copies of this and you have one copy and, like the surprise of like holy cow, like you guys have this and the advantage of finding out young is that it gives a lot of time to think about what are the actions you're doing and how do you want to try and prevent and how you want to live. Your life did Everyone in your family do at twenty three mean dna test yeah while he fell back with relatives visiting and we'd present them with a spit, get we're like now knows it's, not a entry cry period to dinner? You know we just we're just really interested in building the family tree in this way. It super interest. Now I understand you learned at least one surprising thing in the familiar dna testing yeah. My mom called me one day and she's, like you know,
there's this guy. On twenty three mean it looks like we're pretty closely related to them, and I I I jokers she's a brother who you know who never had children, but, but lo and behold, uniforms out that you know do you do have a child and was given up for adoption this person was raised as an only child and then suddenly logs in TWAIN through me, and LO and behold, there's a lot of us on twenty three me, and so you know it's. It's been really lovely a lot of things. I can see in a similarities with my uncle similarities with the family and developed. The relationship is sounds like Africa or we see him quite a bit to me, one of the most exciting things that twenty three is doing, is redefining family. Identifying people who were part of the family that, for one reason or another have you know been disconnected as a child of jewish sent you know: lots of fame
I laughed Russia in the Holocaust and it's amazing to be able to reconnect people. I love it's enough. I looked actual mine the other day and I saw a while ago look of a couple other relatively close cousin. I need to connect with m sure you ve heard a lotta happy stories, I'm guessing you ve heard weird stuff these two and it. It seems that there is lake a new literary genre being born right now, which is but the memoir were summoned discovers at their relatives, aren't who they thought they were, and you are part of the mechanism that made that possible and, like you said for you, it's got great connotations and great actual, But it's also they're all these family secrets that are being kind of exploded by science and I'm just curious a how you feel about that You have also curious whether that was an unintended consequence of what you
done or whether you kind of anticipated. That would be happening. So I recognize you have a range of stories. Often people are pretty excited about being united and sometimes it's not easy on day one, but that it's a journey and I think it's so interesting about the time period were right now. Is that all kinds of things that were not clothes are suddenly being Pino unearthed, and so I think the most important thing we can do is make sure that our customers are aware of the potential. Is this how were the end of let's say anonymous: adoption as we know it and anonymous egg and sperm donation. I think that you know egg and sperm donors have to be aware that this is a text energy that allows people to find each other, but a lot of people who ve donated over the past would say beaten.
Fifty years who are now being discovered. I mean you can imagine what a jarring moment that may be yeah and an eye I empathize with those people I can imagine the shock for some of them. The world is changing pretty rapidly, and I am happy that one of the Un Kennedy consequences of twenty three me is connecting people, and you know. My hope here is that people could start to look as it kind of goes from the weird to the wonderful people absorb and they can say like this- is actually pretty common. just thinking how boring the world would have been if you had come along a few thousand years ago, has so many stories throughout history from the bible and royal families, so many of them are about fertility secrets. Think of all the players it couldn't have been
So I'm glad you waited until the first session will not now they'll be a new generation of fertility related stories. There's something about your genetics, which is pension more powerful than looking in the mirror. There's a reveal that happen. What do you think that is it so curious to because I've read, you know the book by Danny Shapiro inheritance. It's called I have. I have read it. It came from an orphan, jewish family. She was always the blonde outlier, which was very, very, very, very proud of her family is worth history and ancestry, and So for her it was jarring, because he had no idea that her father was not her biological father. Let me tell you what it's like to find. How you were wrong, just plain wrong about who you are and where you come from, and literally
She wrote almost something like you, too said the stronger than looking in the mere to look in the mirror one day and see a stranger staring backing. You that's what happened to me. A family secret was kept from me. Before my entire life and the middle of the night, sometimes ask myself this question: Who am I, who am I I know the truth: I'm curious why you think that is because I did frame it. That way. In my mind, I think that you know who raises you in the environment urine. You know that is so much more powerful or meaningful. Then the biological determination and
Yet it seems a lot of people say what you're saying I'm just curious. If you have any, I guess philosophical is thoughts about why that pole is so strong and deep. Why think a couple things there's something about your roots: eat your connected to these people, there's a story and for some people that story is important for some people it's just not, and I think that we are in a moment in society where a lot of people don't feel, grounded and there's something about king at your dna and finding a trace in the past and where it's been and those routes, the connections and understanding. Why? Why are you the way you today. Why do I have these preferences? Why do I look a certain way? Why does my speed smell like asparagus hits? Everyone's top question is: are you Now I just like people, I think, are looking for a question of like why
Am I the way I am and thats actually a beautiful question their spectacular human diversity on this planet and were all a little bit different? and you can see, mutations in certain areas have given rise to certain characteristics and and there's all kinds of reasons why those mutations of happened. Each mutation actually has a story, and this mutations connect you to other people into the past. One of the favorite things my children and their cousins of doing is looking at what DNA do they have in common with each other and it's fun to look like ok, the eye genes like who has them in common who gone from other grandparents there's a different way of feeling. Like I'm connected you, I have this bond and I think that I said people are looking for meaningful connections, can we next time and economic freedom.
have you ever noticed at every project from a dissertation kitchen renovation to a huge infrastructure project always takes way. Longer than planned and costs way more there. is a phrase for that. So the Planning fallacy is a tendency to underestimate, the time it will take to complete a project planning. Fallacy optimism by blown deadlines and how to beat them all its next time and for economic, radio freedoms, radio is produced by Sticker and W productions. This episode was produced by Rebecca, led Douglas. Our staff also includes Allison Craig Little met, Hickey Harry Huggins, Zack Le Greg Ribbon and Wallace? We had help this week from Nellie Osborne,
Our theme song is Mr Fortune, but the hitchhiker's, all the other music was composed by Luis Guerra. You can sub. I have to freedom, radio on Apple podcast. Ever you get your podcast. Our entire archive is available on the stitched up or at freakin I'm dot com. We also published transcripts and show notes and much more. If you like to hear our entire archive ad free, plus lots of bonus episodes. Goods did your premium dot com for we also publish every week on medium, a short text version of our new episode, to medium dot com site for economics, radio, we can also be on Twitter and Facebook and linked in or be email at radio at for economics, outcome show So please, I'm many NPR station so check your local station for details. As always. Thank you for listening stitches.
Transcript generated on 2021-01-19.