Inside 23andMe founder Anne Wojcicki's $99 DNA Revolution | Hacker News Reader

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

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56 pointsstfu48 comments

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.

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.

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.

> 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...

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.

That's not correct. The Personal Genome Project (PGP) is a Harvard-run study that aims to get 100k people to publicly post their full genome, along with their health and trait information.

The study took some of these public DNA samples, and searched genealogy databases to find likely relatives. The self-reported surnames were thus those of distant relatives, not of the PGP-participants themselves. The researches then combined those likely surnames with information such as zip codes on the PGP public profiles to correctly identify several participants (given that a zip code, gender, and surname is often enough information to uniquely identify a person).

It should be noted that the PGP has a rigorous education and consent process of the risks of publicly posting DNA. So while the study may have surprised some of the participants, it's not something any of them were expecting could never happen.

You can read more info on the study here: http://www.wired.com/wiredscience/2013/01/your-genome-could-...

Thank you, I stand corrected! Thanks to the other commenter with the study link too.

"They don't link the study, so it is hard to tell."

The study: "Identifying personal genomes by surname inference." Gymrek et al. Science. 2013 Jan 18. (http://www.jhu.edu/pfleming/bioinform/files/gymrek_science_2...)

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.

The "third-party doctrine" is the shorthand name for a rule that only holds for Fourth Amendment protection (whether you take it as a placeholder for "reasonable expectation of privacy" or other interpretations). Disclosing your data to other companies wouldn't be protected by the Fourth even without it. Suing for breaking ToS is always an option, if the company isn't already bankrupt by that point. Definitely something important to consider.

It looks like you're correct that 23andMe is not covered by HIPAA:

http://www.genomicslawreport.com/index.php/2009/10/27/federa...

Suing for breaking ToS is always an option, if the company isn't already bankrupt by that point. Definitely something important to consider.

I have to think you're just being contrarian, because as far as I can tell this idea is a joke at best. In other words, "good luck with that," and not important at all.

I'm not being butthurt, I could not find a single case of anything close to this "important consideration" succeeding. The only possible angle I can come up with is a DMCA action, but as far as the CFAA, contract law, or anything that has any precedent behind it, I'd guess the victim is shit out of luck, and for DMCA to succeed you'd have to forge some heavy tools to establish some IP control over the data that was leaked/shared. IANAL.

tl;dr: once you give data to a business, they can do whatever they want with it.

Er, what? Maybe I wasn't very clear; I think I was mostly agreeing with you. "Definitely something important to consider" was in reference to customers having little leverage in that relationship, something important to consider before using them for genetic testing.

Suing over breaking ToS is an option (and it is done; just because they say they aim to "minimize the possibility of exposing individual-level information", which seems to offer wiggle room, doesn't mean that there aren't many interpretations of that phrase that are unconscionable and you could then sue over), however, that's not a whole lot of leverage, and there's the very real possibility that the reason your data is out is because they've gone bankrupt or are very nearly bankrupt and are either trying to recoup investor money or are in a last ditch effort to stay profitable. At that point there's not much your suit is going to do or recover, if they even disclose what they've done in the first place.

Suing over breaking ToS is an option (and it is done

When has someone sued over ToS for a data leak?

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.

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

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.

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.)

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.

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

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.

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.

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.

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.

"...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....

+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.

> "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.

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...

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.

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.

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.

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.

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)

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.

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!

Illumina does WGS for $5000. It's more than just that, there is a whole conference you attend to learn more about the process and what it means. I think you also get an iPad. :-)

http://www.illumina.com/company/events/understand-your-genom...

It's new business development- Illumina's interested in jumpstarting the clinical WGS/consumer genetics industry, so they hold things like this, expecting other companies will pick up the model and focus on it).

Because Illumina makes money on the consumables, having such an industry will be very profitable for them.

Thank you for this info!

Why exactly?

Did you watch Gattaca and think to yourself: "That is the type of world I want to live in!"

It just seems like there is some small chance that sequencing everyone will make the world better, and a much larger chance that it will make it worse.

Do you believe that your data is secure with them?

I believe that my DNA "data" is intrinsically insecure; pop cans, hairs I leave just from being in a spot, etc.

If someone wants me genome, it is fairly trivially for them to obtain it; I believe the benefits of sequencing outweigh the risks.

That is like saying your bank info is insecure because you shred it and throw it away.

It is one thing for someone to steal your hair and run a somewhat expensive genome sequencing on it. It is another to have it already sequenced and stored in an internet accessible database in a easy to read file format next to all of the other relevant data I would want. Of course this is stored next to thousands or millions of other already sequenced genomes that are also in the correct format and accessible without me even leaving this chair.

My email address or credit card info generally doesn't get stolen from my shredded trash. It gets stolen from a 3rd party database chock full of tons of other emails making it a goldmine for people who want email addresses/credit card numbers.

Like I said, I'm not worried about it. My DNA is already publicly available as part of the Personal Genome Project: https://www.personalgenomes.org/

I wouldn't hold your breath... that beta ran a few samples in (I think) 2011-2012, but I haven't heard of anyone getting an exome processed after the initial batch. You're probably better off sending a sample to one of the commercial sequencing companies.

I'm sure someone on here has more info about it than I do though...

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?

GWAS is... well, GWAS is just a technique to find statistical correlations between genotypes and phenotypes. It's a very limited (powerful in one way, but limited in many others) way to approach the problem of "to what extent do mutations in DNA cause phenotype changes". It requires fairly large sample sizes to do reliably for diseases which don't have a really strong (mendelian or otherwise) signal, it's fairly poor at working with pairs or larger # of interactions between genes, can't do much with genes and the environment, and is a really simiplified model of how organismal biology works, anyway.

there are a few issues with exome: 1) exome prep is a big issue in itself 2) exome leaves out large regions which are likely to be important in understanding many aspects of human biology

At this point, I'm speculating:

even whole genome sequence at relatively high coverage per individual * large # of individuals is likely to not explain all the aspects of organismal biology. There appears to be a fair amount of state that is transferred from a parent cell to a child cell during mitosis that is not expressed in our current DNA assemblies. The whole chromosomes themselves are complex, enormous structures that undergo massive rearrangements during the various phases of the cell cycle... yet are still capable of maintaining tons of epigenetic state. Very little or none of this is really being analyzed in a systematic or rigorous way, which is frustrating to see because, as somebody with a training in human molecular biology, all of this has been KNOWN FOR DECADES! I mean seriously, Chapter One of Molecular Cell Biology, please!

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.

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.

Owned by Google = Privacy nightmare?

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.

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

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