Inside 23andMe founder Anne Wojcicki's $99 DNA Revolution

http://www.fastcompany.com/3018598/for-99-this-ceo-can-tell-you-what-might-kill-you-inside-23andme-founder-anne-wojcickis-dna-r

by stfu • 13 years ago

56 48 13 years ago

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lnanek2• 13 years ago

Site is pretty grueling, though. I have dozens and dozens of DNA sharing requests, but it takes like 4 clicks for every single one to OK it. Sometimes they are people I knew anyway once I see their name, sometimes it ends up being an interesting conversation with just someone from the same area as my great grandparents, but every time it's an annoying click fest to find out.

Maciek416• 13 years ago

Agree. It's definitely a sub-par user experience. You often have to sift through dozens of connection invitations for people who clearly haven't found you on the cousin identification list -- instead they've simply searched by country name, or city name, and are randomly asking people if they might be related. Given that the system has a pretty reliable way of identifying 10th-or-closer cousins and immediate family relations, it seems pointless to have any other way to connect with people on the site. More frustrating still is that most of the time when you try to make contact with people who have been identified as very likely 3rd or 4th cousins, those invitations are met with silence.

tokenadult• 13 years ago

The article reports, "'The long game here is not to make money selling kits, although the kits are essential to get the base level data,' says Patrick Chung, a 23andMe board member and partner at the venture-capital firm NEA. 'Once you have the data, [the company] does actually become the Google of personalized health care.' Genetic data on a massive scale is likely to be an extremely valuable commodity to pharmaceutical companies, hospitals, and even governments. This is where the real growth potential is."

This statement is based on the assumption that once 23andMe has the 25 million people sign up that the founder desires, that their genotypes (at the resolution of testing that 23andMe can provide) will actually provide a lot of actionable information.

But there is a LOT of reason to doubt that hope. I was just at the weekly meeting of my alma mater's journal club on behavior genetics today, and the papers we discussed today are about rare variants in DNA and their possible relationship to human disease.

Casals, F., & Bertranpetit, J. (2012). Human Genetic Variation, Shared and Private. Science, 337(6090), 39-40. doi: 10.1126/science.1224528

Brookes, K. J. (2013). The VNTR in complex disorders: The forgotten polymorphisms? A functional way forward? Genomics, 101(5), 273-281. doi: 10.1016/j.ygeno.2013.03.003

Maurano, M. T., Humbert, R., Rynes, E., Thurman, R. E., Haugen, E., Wang, H., . . . Stamatoyannopoulos, J. A. (2012). Systematic Localization of Common Disease-Associated Variation in Regulatory DNA. Science, 337(6099), 1190-1195. doi: 10.1126/science.1222794

Schork, A. J., Thompson, W. K., Pham, P., Torkamani, A., Roddey, J. C., Sullivan, P. F., . . . Schizophrenia Psychiat Genomics, C. (2013). All SNPs Are Not Created Equal: Genome-Wide Association Studies Reveal a Consistent Pattern of Enrichment among Functionally Annotated SNPs. Plos Genetics, 9(4). doi: 10.1371/journal.pgen.1003449

It is dismaying likely that even millions of well-genotyped samples will provide very little illumination of the development of disease risk in human beings. For you to get actionable information from 23andMe, moreover, you have to count on 23andMe having detailed personal health information about yourself and the other 23andMe customers: "But first Wojcicki needs spit. Her goal is to sign up a million customers by the end of 2013. Eventually, she says, 'I want 25 million people. Once you get 25 million people, there's just a huge power of what types of discoveries you can make.'" Translated into English, that says that the company has very little information to offer yet, and wants you to pay for the privilege of providing highly personal information in the hope that the company can use your information to draw in other customers. I'm not optimistic that that will even help your fellow customers, as I learn more about current genomics research. This business plan certainly puts a premium on the company having ironclad guarantees of customer data privacy, and gathering lots of personal health information on the strength of those guarantees. It's an open question whether this is really a good trade-off for you or me or any other individual.

Diamons• 13 years ago

I got the chance to meet Patrick Chung at Stanford once. If he says that's what 23andme can become, I honestly believe it. He showed incredible insight into startups and emerging markets when I met him.

computer• 13 years ago

The insight needed here (and alluded to by GP) is not into startups and emerging markets: it's about what you can actually do with DNA and the DNA analysis that's being done by 23andme.

In my opinion (as a statistician with minor bio experience) the future of predicting health things based on just DNA is uncertain, except for direct remedies for known current conditions like certain forms of cancer. (i.e. as a response to disease, in actual personalized medicine)

dekhn4• 13 years ago

Were you aware that 23&Me also had an exome sequencing pilot ? https://www.23andme.com/exome/

That addresses the "resolution of testing that 23andMe can provide".

The other point is that humans cluster into a small number of haplogroups, and with a small number of WGS or exomes, we can impute many things on the other lower-resolution data based on the fact people are very closely related.

I'm not defending the current approaches (GWAS, etc). They are known-broken. Nor am I defending exome sequencing - also known-broken.

Anyway, it's trivial now to do 1000+ genomes at 4X coverage, which gets you many of the rare variants.

Of course, at the end of the day, the current approaches are unlikely to unlock the full medical potential of the genome. Most people studying genomics and health have very limited mental models of how cells and tumors and organs work, and none of the existing methods really do anything beyond correlation analysis on noisy data.

toomuchtodo4• 13 years ago

I was a 23andme.com customer from the very beginning; didn't know they had an exome beta. Thanks for the info, signed up waiting to be in the next batch!

berdario• 13 years ago

This is very interesting... how is GWAS or exome sequencing broken?

Wikipedia says about exome sequencing that's a "cheaper but still effective alternative to whole genome sequencing."

I have some basic knowledge of biology, but I'm don't know anything about sequencing... do you have some details?

dekhn4• 13 years ago

Mr Chung is absolutely 100% completely correct that there is a long game 23&Me is playing. Their current business is really just wading in the shallows and being prepared for the big wave, while everybody else is still lying on the beach.

jonlucc2• 13 years ago

I was lucky enough to see a presentation at a pharmaceutical company. Essentially, it was a pitch for us asking them for information. The idea is that a bunch of their customers have answered a ton of questions, in addition to the gene-chip data they have. Then, they can also opt-in (it was a pretty high percentage that do) to answer additional questions as part of further study. This would be a very valuable recruiting tool for clinical trials, as it could greatly reduce the lead time on recruitment by just offering customers within a certain distance of participating centers who are known to have or be susceptible to a disease or condition. It's not that the gene data is considered perfect, but that they also have a huge database of additional questionnaire type data that can be leveraged.

homosaur• 13 years ago

I think this company is interesting but am disturbed by every time I read an article about them, they just laugh off privacy concerns.

It's not 2013 I'm worried about with someone accessing this data, it's 2023.

Says Andy Page: "I view this as a tidal wave of inevitable data and a trend in the marketplace. The technology is available; the price point is decreasing. There are so many organizations and engineers and companies that are focused on this."

Of course you see it as a trend, or at least your pocketbook depends on it being one. The fact that he isn't responding with all the robust steps they do to protect data leads me to believe there's not enough concern at this company for privacy to trust them. Maybe that's okay when it's yet another SV social bullcrap site, but for medicine? Nah.

Tichy• 13 years ago

It seems only a matter of time until the data base leaks, and I wonder how valuable that information might be.

Could it be used to find matches for organ donation, for example (with subsequent accidents happen to matching donors)? I know, very "movie scenario" threat, but it is just one creepy idea.

dil4heys3• 13 years ago

And you thought Zuckerberg was bad.

The cavalier attitude towards privacy that pervades the field of genomics is deeply troubling to me. From the article: "23andMe's privacy statement clearly states that it collects a person's genetic, registration, web browsing, and self-reported information. The company can share its data with third parties '[after] it has been stripped of Registration Information and combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence.'"

Having read that, consider that "a team of geneticists reported Thursday in the journal Science that it was able to figure out the names of people who had donated their DNA to research -- even though test subjects' identities were stripped from their genomic data." (Source: http://articles.latimes.com/2013/jan/18/science/la-sci-sn-ge...)

Anne Wojcicki, co-founder of 23andme, is married to Google co-founder Sergey Brin. It doesn't seem entirely implausible that the two companies could have joint business ventures down the road. I wonder how valuable "anonymized" genomic sequences would be to advertisers.

AceJohnny2• 13 years ago

Anne Wojcicki, co-founder of 23andme, is married to Google co-founder Sergey Brin.

Not for long: http://allthingsd.com/20130828/google-co-founder-sergey-brin...

dweinus2• 13 years ago

From the LA Times article: "Using information posted to genealogy websites and other publicly available Internet resources, the Whitehead Institute researchers were able to ferret out the names of nearly 50 people"

They don't link the study, so it is hard to tell, but it appears that what actually happened is they used self-reported identifying information linked to DNA entries.

It's not apparent that they did any genetic analysis whatsoever.

That is still certainly a privacy attack vector, but one on par with getting your email hacked because you always use your birthday as you password.

rhizome3• 13 years ago

The third-party doctrine (in the US) means that their customers have no expectation of privacy anyway, so any promises they make can be thought of as little more than window dressing: customers will have no real avenues for redress when the data does in fact leak. I can't find any information about whether they are bound by HIPAA, so my guess there is "no," or else it would be trumpeted a bit more.

loceng• 13 years ago

What I want to know and be disclosed is a) if they have my DNA fingerprint and if b) they or a third-party is using the data to filter and direct certain information (or eliminate certain information from coming) at me - e.g. ads or otherwise. If you know I have a higher risk of X type of cancer, and you know I know - are you going to pull the fear card to sell me something? What about relating to diabetes or intelligence or ADD or depression or how I'm likely to vote or or or or or ... The amount of manipulation and control that can result from this - realized as power - is immense, the nuanced value of the information gives insight never before possible on a person. Could this lead to highly accurate priming patterns to lead a person to a certain decision - consciously impossible to realize? This could be used for very bad purposes, and usually it's people with profit or looking to gain more profit and control - who will put the most money towards such purposes, meaning the highest bidder for targeted ads - meaning for-profit businesses, Google et al, will be okay with it, and where government needs to regulate and actively monitor - though I'm not sure you can detect such patterns, meaning the only real option is ability to opt-out. Services like DuckDuckGo are feeling more important as time goes by - though how shielded are we if Google becomes the main internet provider - and where government / society can't even compete, or at a higher cost as Google or others will be have more value they can extract to compete.. ugh.

jasiek• 13 years ago

That, or the NSA, or any other govt agency comes in and says: "Hand over the data, or we'll fuck you up."

seiji2• 13 years ago

DNA privacy seems overrated to me. If you really want my DNA, it's easier to just follow me around for half an hour or stalk me at a restaurant, isn't it?

Only the president poops in bags.

angersock• 13 years ago

So, is there someplace I can get my own sequencing done, and the samples destroyed or rendered useless afterwards? It'd be nice to help prevent people from making more angersocks at sometime in the distant future.

andyl• 13 years ago

The website looks like amateur hour. The service relates somehow to health AND ancestry, AND to keep updated on DNA science.

Spaghetti on the wall, with poor execution. People invested $126 million in this? The emperor has no clothes.

seiji2• 13 years ago

Some may say it's easier to get investment when you start a startup and your husband is a billionaire founder of google.

joering22• 13 years ago

Be extremely sure you want this, because per their TOS the return is the price you paid minus around $25 for the spit kit. Even unopened kit won't be accepted/money refunded, I was told via their helpdesk.

The thing that got me to change my mind was some blogger article that was going through their TOS/PP and realized that once you do this test, you are legally obligated for revealing results to the insurance company you plan to be insured with. Not sure how much the truth it is, but this plus the owner sleeping in one bed with Google's Brin ("hey honey so how is it going with collecting peoples DNAs? - very good - okay keep up the good work, in couple years I will buy you out then we can match your DNA database with their credit card / name / dob and attach it to their Google profile so we serve them more matching ads", turned me away for good.

dil4heys3• 13 years ago

"...once you do this test, you are legally obligated for revealing results to the insurance company you plan to be insured with."

Got a citation for that?

If that's true, then getting a 23andme test could mean price gouging for anyone looking for life insurance, disability insurance or long-term-care insurance. The Genetic Information Nondiscrimination Act (GINA, https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...) prohibits employers and health insurance companies from genetic discrimination, but there's a big loophole for other types of insurers to. More information: http://www.npr.org/blogs/health/2013/01/17/169634045/some-ty....

joering22• 13 years ago

+1 for link but no I am sorry no citations I was looking for the same article but I cannot find it. Basically the reasoning behind it was that a DNA test can potentially reveal some information to you about your eventual future diseases. Now when you sign up for life insurance you are legally bind to tell the truth and tell everything you know about your health status. If in some limited scope of course you will get into lawsuit with health insurance company, its possible they subpoena 23andme and get the information you initially had access to. That was the point.

lawnchair_larry• 13 years ago

"The thing that got me to change my mind was some blogger article that was going through their TOS/PP and realized that once you do this test, you are legally obligated for revealing results to the insurance company you plan to be insured with."

This isn't true.

cowsandmilk• 13 years ago

Does not square completely with the Genetic Information Nondiscrimination Act[1]. Note the part of the wikipedia article that mentions types of insurance not covered by the act, where I guess this could apply.

[1] http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimi...

jrochkind1• 13 years ago

The thing about 23andMe, is that that kind of genetic testing really does not tell people what people think they are being told. The amount of actual actionable information you can get from a gene map like that is.... a LOT more limited than people such as 23AndMe customers think.

Here's just one article on that, just the first reasonable one I found googling: http://www.forbes.com/sites/stevenkotler/2012/12/13/what-is-...

So the real thing about 23AndMe, is how they took advantage of very popular misconceived exagerated expectations about a) the extent that genetics are destiny, and b) even to the extent that genes are destiny (less than you think), the extent that current science can actually succesfully figure that out -- to make a lot of money.

These are EXTREMELY popular misconceptions, they fit into the zeitgeist well. So 23AndMe can make a lot of money off them.

(And I'm not suggesting that the 23AndMe principals are intentionally taking people for a ride--I'm sure they believe it too.)

neilc• 13 years ago

The amount of actual actionable information you can get from a gene map like that is.... a LOT more limited than people such as 23AndMe customers think.

I wouldn't be so sure that 23andMe's business model depends on their customers being uninformed -- for $99, you don't need a vast amount of actionable investment to justify the purchase. Hell, getting your teeth cleaned without insurance can easily cost you more than $100. I wasn't expecting a ton of actionable insight from 23andme, but I don't regret spending the $99.

jonlucc2• 13 years ago

I agree with this. The profit for 23AndMe comes on the backend, not from the kits.

smrtinsert• 13 years ago

Time and time again they get so much press. There are way better services in almost every direction such as those offered by Counsyl (https://www.counsyl.com/). Forget 23andme, it just seems to be the tech celebrity/ivy league circuit at work.

pknight• 13 years ago

Given the amount of things we don't know about DNA, I would not put my trust in this kind of endeavour. Just look at the fast developing area of epigenetics, or the simple fact that many studies appear not to be replicable, or the fact that when money is involved groups tend to paint a certain picture that may not necessarily be accurate. The genome project was a hyped up affair and its results nowhere near as revolutionary as people made out to be in advance. Meanwhile, the downsides of large scale DNA testing are potentially chilling. Given how 'kindly' organisations treat sensitive information, there's no basis for this kind of trust.

pdfcollect• 13 years ago

Owned by Google = Privacy nightmare?

Inside 23andMe founder Anne Wojcicki's $99 DNA Revolution

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