How Anne Wojcicki’s 23andMe Will Mine Its Giant DNA Database

https://www.forbes.com/sites/bizcarson/2019/06/06/23andme-dna-test-anne-wojcicki-prevention-plans-drug-development/

by woodgrainz • 7 years ago

141 137 7 years ago

ianai7• 7 years ago

When will people place a value on their personal data? A video uploaded with a copyrighted song in the background can be challenged by the IP owner and often is. But even with public outrage over things like PI breaches at Equifax, 23andme gets full ownership of peoples’ dna.

erikig2• 7 years ago

Let’s play devils advocate - “So what? What is the big deal if my DNA info is out in the public?”

nickles• 7 years ago

This talk from DEF CON goes into some of the potential risks of sharing DNA. In short, it conceivably opens a person to targeted attacks designed to recognize specific individuals, families, ethnicities, etc.

[0] https://youtube.com/watch?v=HKQDSgBHPfY

paulryanrogers2• 7 years ago

Are you comfortable paying more for health insurance because you lost the generic lottery? How about facing persecution because of your ancestry? Hiring discrimination?

(Of course the data doesn't have to be accurate or the analysis correct to suffer.)

DevX101• 7 years ago

You try to get health insurance and provider denies you because you have an allele that makes you susceptible to lung cancer.

Your DNA happens to be at the scene of a crime (you didn't commit). Police do a DNA dragnet. Now good luck getting off that case.

JoeAltmaier2• 7 years ago

You have a credit rating kept by institutions. That's a wellknown issue - false reports, identity theft etc.

Now imagine a health-reporting institution, used by employers etc. Similar issues will happen - mistakes, failures to update. You get a 'high health risk' rating and can never get insurance again? That's an issue.

stevenwoo2• 7 years ago

I do not know why the article did not mention it but I think people might feel the case of Henrietta Lacks where there are a lot of thorny questions would be relevant, even though people give their consent to 23andMe now.

Also false positives for DNA matches - overconfidence in results from DNA labs due to popular culture thinking DNA match = 100% guilty combined with numerous controversies over police forensics in recent years, Houston off the top of my head had to throw out every case that their police lab did testing for a range of years due to lab tech incompetence.

gingabriska• 7 years ago

My friend got it because she wanted to know what the company has to offer with their service and she is okay, with this service using her data I guess.

wolco2• 7 years ago

I got mine done recently and there are so many fun datamining activities.

Same with ubiome.

Do I care that a company can make a profit? No.. I prefer bsd/mit licease as well for this reason.

siculars• 7 years ago

Anyone surprised? For this and other reasons I've refused to use their service and other services like theirs.

Here's a service. Pay to get your panel/exome/whole genome sequenced, put your data on gcp/aws/azure, user open source to do variant analysis and pay a specialist for their computer aided analysis.

Guess what, you own your data end to end. I imagine the above could be had for less than $2k. Some startup will write the software stack to do this and simply sell licenses for software you run anywhere you want.

Lyle-Cantor• 7 years ago

No one should be surprised, their database is extremely valuable. They have a labeled database of millions of genomes. Once they sequence them all, then they just need to buy Luminosity (which is basically a site full of IQ tests) and find their common customers. If they have a millions common customers, then they can build a predictive model for IQ. Repeat with any other trait you want to predict. Hell, buy a video game company and embed behavioural tests within it.

Sell it for use in embryo selection, employee profiling, to governments.

zxcb1• 7 years ago

Huxley?

dahfizz• 7 years ago

I think that's an incredibly small niche. So few people care that much about privacy or have the technical awareness. This solution costs a lot more and requires more work from the user.

Symmetry• 7 years ago

Not surprised, contributing to our understanding of genetics was half the reason I signed up for 23andMe.

epistasis• 7 years ago

There's a lot of churn in that market of startups doing it and stopping doing it.

The scientific community has already created all the tough parts of the software stack, and everything has been commoditized already, there's just not much of a customer base.

The customers that it's really really useful for are those with rare phenotypes that want to learn more, and they can't find a doctor with expertise, and there's no lab specialized in genetic testing for that.

However, those are also the cases where the off the shelf software/sequencing doesn't always give the right answer because it's not a simple small change, and then you need specialists both on the biology and bioinformatics side to really make it useful.

testvox• 7 years ago

Federal law requires that labs retain the results of genetic testing for a minimum of 10 years.

Reports of genetic testing must be retained for at least 10 years. Electronic records are acceptable. Specific regulations for specimen retention are not proposed, but each laboratory must have a written policy defining its own specimen retention policy.

http://clinchem.aaccjnls.org/content/45/5/739

astazangasta2• 7 years ago

This is for CLIA tests, i.e. clinical tests. 23andMe is explicitly NOT this as they can't make medical claims. Just getting a piece of DNA sequenced does not require this kind of retention; GP is right, this is a viable business plan.

Data retention is the next big wave and these companies would do well to clue in. There is zero chance they will find anything medically useful with their database and a ton of outstabding liability once people realize how it can be abused.

usgroup• 7 years ago

Well, once you launch your startup I look forward to being a customer :-)

draklor402• 7 years ago

Hasnt anybody ever watched Gattaca ?

buboard10• 7 years ago

I am for one glad my data is in there. Disease and aging should be our number 1 priority. If your governement and insurance systems are shitty and spy and exclude people, you should fix that instead of putting barriers to science opportunity.

untog• 7 years ago

Nice fantasy world to live in, where disease an aging are our number one priority and the insurance system is fixable.

Why not fix both of those things first before feeding our personal data into a fundamentally broken system?

throwaway2048• 7 years ago

How about we fix it before putting people at massive risk of harm, and risk poisoning the well on genetic research forever?

buboard10• 7 years ago

right, i dont see anyone arguing for that in here though

windexh8er3• 7 years ago

I partially agree with your angle, however I don't understand the jump from how understanding disease and giving my DNA to a for profit company that may not fully be researching, but showcasing disease, removes "barriers to science". Care to expand?

buboard10• 7 years ago

If not for 23andme, who would have created a comparably big database of SNPs? I dont understand what showcasing disease means.

I know we are all good people, but most of novel science happened with methods that we would find totally unacceptable today, from lobotomizing people, to deafferenting cats, to sending dogs to space. If 23andme didnt have established a large user base, it would be impossible to get a comparably big database given today's regulations (and climate).

jcl• 7 years ago

I guess it's analogous to the pros/cons of allowing software to send crash reports... Withholding your data protects your privacy and prevents abuse, but it also causes your problems to be underrepresented in a public data set, which makes it less likely they will be addressed.

cgriswald2• 7 years ago

I, for one, am glad my data is not in there.

Our government and insurance systems are shitty, and until they are fixed, disease and aging won't be our number 1 priority.

Even individually, our DNA is probably worth a bundle to many companies. To me, my DNA is as near priceless as something can get. I'm glad I didn't pay someone to take it.

The profitable, yet dystopian uses of this information are potentially limitless (see the most recent thread about how the Nazis used IBM technology), but the regulations are negligible to non-existent. I'm more than happy to not be one of the victims of these uses for whom laws and regulations are made after-the-fact, if they're made at all.

ianai7• 7 years ago

This definitely underscores the point that government is not too big. If government regulation we’re keeping the markets free and efficient then DNA and personal data would be considered a good or service owned by the individual.

Real_S4• 7 years ago

If this data was hacked, and your genetic information became public, would you feel the same way?

cameronh90• 7 years ago

Not GP, but personally I do not mind. I have voluntarily shared my DNA information with a number of people.

Health insurance is not important here (UK), and life insurance is much less of an important concern to me as I will not have children. But I can see why if that is not the case, you would be more concerned.

I do have some concerns about it being used by the police, though public availability is unlikely to make a difference there. I've never committed any crimes, but the police are known for using scientifically and statistically invalid methods to prosecute.

booleandilemma• 7 years ago

Honest question - why does it matter? Can they get access to my bank account with that info? My email? Can they impersonate me? How is it different than someone taking my picture?

Don’t I leave a trail of DNA everywhere I go anyway, from shedding dead skin cells?

buboard10• 7 years ago

My genetic and biometric information is already in some government's databases, sometimes with more actionable information than "elevated risk of restless legs syndrome". Associating a list of 500K SNPs with my name would bother me but not that much really. It would take a lot of work to make use of it anyway and i cant think of a reason this would harm me gravely(+). Anonymized information of my DNA would bother me even less, as i m not more exceptional genetically than most people. Tbh, this is not my information, i share DNA with most of the species on earth and i didn't really create that information (unlike, say my google searches), nor did my parents. Thats why i oppose to genetic patents too, and think that DNA should be public domain.

(+): Well if someone wants to engineer a deadly virus that targets specifically me, then what can i say , that's at least a memorable way to die. But they can do that from a piece of my hair too.

stankypickle3• 7 years ago

I fully agree, but I think that is easier said than done.

It is conceivable that this would require massive amounts of money to lobby politicians and inform the public of an issues that most people don't give a shit about (Hell, people are so scientifically averse that vaccination is still a significant issues in 2019).

What makes this even more challenging is that there are parties whose interest is to exploit that information for their personal gain rather than helping the individuals with that DNA (e.g. insurance companies, government agencies, etc.). Those parties likely have access to more money and are more capable of lobbying and propagandizing for their interests.

buboard10• 7 years ago

No great advancement comes without dangers. But at the moment we seem to be stifling the benefits while allowing government surveillance to go through "for the good of society".

devmunchies• 7 years ago

Disease and aging should be our number 1 priority

Humans are ballooning as a species and hurting the planet and causing other species to go extinct... and you want to eliminate disease and aging from said species?

buboard10• 7 years ago

Of course agent Smith. What better way to exterminate the wretched human species than to make it die of overpopulation?

Creationer• 7 years ago

Only specific sub groups are doing that:

https://www.populationpyramid.net/static/population-projecti...

Or to be specific, Africa and West Asia, due to a lack of access to contraception. That can be solved by redirecting 100% of aid towards education, contraception and abortion for women, and away from food aid.

breck4• 7 years ago

Second derivative of population is negative.

I understand the point of view that preserving species is a moral good, but it is just one of many possibilities and could very well be wrong.

draklor402• 7 years ago

Hasn't anyone ever watched Gattaca before shipping their DNA sample to a Silicon Valley company ?

hannasanarion2• 7 years ago

Gattaca is not a documentary

neolefty• 7 years ago

Neither is the 2059 Genetic Equality Program, described in this op-ed: https://www.nytimes.com/2019/05/27/opinion/ted-chiang-future...

lokl• 7 years ago

DNA sequences should be viewed differently than other personal data, since they are personal not only for you, but also for your children, grandchildren, siblings, parents, etc. When you make a decision to share this data, you are making a decision for them, too. The implications might not be the same for your great-great-grandchildren, but who can tell whether the impact will be better or worse? How will it be possible to use the information in the future, when technology, science, law, politics, and social customs might be quite different?

We often see complaints about big companies selling their users' personal data, but in this case the decision lies with each individual who shares his DNA sequence. Do you believe it is ethical to share your relatives' personal data without their consent?

HenryBemis• 7 years ago

On a similar process I find disturbing that when a friend decides to use WhatsApp and the decide to share their contacts with (f...ing) Facebook, they give them my name, surname, phone number, and who knows what else is in that contact card.

They don't ask me, I don't approve that, but still Facebook gets my data. Same applies for Viber, Signal, etc. of course.

dessant• 7 years ago

I agree with you, though Signal does not get access to your contact list, in case anyone is looking for a less user hostile messaging app.

https://support.signal.org/hc/en-us/articles/360007061452-Do...

octorian2• 7 years ago

Using WhatsApp just shares the raw phone number. None of those other details leave your phone.

(Of course sharing /w the Facebook app is probably a completely different story.)

endorphone2• 7 years ago

You are leaving a DNA trail in your wake, and it's only private or personal insofar as no one looked at it. But it seems like it's something that we really have no hopes of keeping private over any reasonable timeline into the future.

hkai• 7 years ago

Interesting, did anyone ever try to massively analyze DNA by collecting, I don't know, hairs or used cutlery or other waste that contains DNA?

mtgx• 7 years ago

Aren't we moving the goalposts as technology advances?

For instance, your DNA used to be private in the past simply because no one could do anything with it even if they would get it. So you benefited from this privacy aspect by default. In the next 20 years your DNA will probably be in multiple databases somewhere even if you never offered it to companies.

Similarly, in the past you may have benefited from the privacy of your own home. You could say or do anything you wanted and that would be kept private (for the most part). Now, with all the "always-on" smartphones and smart home devices and surveillance cameras, everything you do or say in your home will be on someone else's server, which can be data mined, sold to third-parties, requested by various law enforcement agencies, and stolen by cybercriminals.

It seems to me that from your point of view and with enough technology advances we'll have 0% privacy in the future. Everything around us will listen to us and watch us, and then others, with who you may have never interacted, will also get to see and analyze all of that data.

So the technology could enable all of this -- but the question is should we let it? Privacy is a human right for a very good reason -- abuses against someone's private life can lead to all sorts of nefarious things against that person, whether it's something as "benign" as increasing your insurance rates to not offering your free/cheap healthcare because you "live too dangerously" or malicious actors and government agents using it to destroy your life for profit or personal vendettas.

stankypickle3• 7 years ago

If people have that attitude then it will most certainly be the case.

drdaeman• 7 years ago

It's similar to facial recognition.

It's not about the ability to look at something, face image or DNA. It's about ability to remember that information and use it.

Some argue that they want ownership of information that concern themselves, and right to deny others from handling that without explicit consent. Others argue that collection is alright but sharing (with or without exceptions) isn't. Others disagree completely and say that information belongs to whoever holds it, as it's immoral to deprive person of rights to have memories. It's also arguable that privacy laws may apply differently between persons and companies. Or between natural and artificial memory banks. Or that different rules should apply based on volume of data stored, like number of persons involved. I've read many different opinions on this matter. Lean towards some, but haven't firmly decided on any.

I don't think this will be fully resolved until someone would invent eidetic memory drugs or implants or something like that, and we'll have to erase the current boundary between humans and machines.

filoleg• 7 years ago

I agree with you. However, I felt important pointing out that we already have something like that happening, where users consent to share their personal data and in the process share data that isn’t really theirs as well. Just to clarify, i do not think that it is supposed to make sharing data of other people in this way any less bad.

Famous example (albeit of a smaller significance, since the data of users shared was public for all their friends) - the whole Facebook/Cambridge Analytica scandal. Users were giving up their data using their survey app, but they ended up sharing the profile info of their friends as well without their permission.

breck4• 7 years ago

You literally drop your DNA in public everywhere you go. It’d be like walking around dropping copies of your bank statements 24/7 and then saying that they are private. Nearly all of it is a straight clone off the main branch anyway. So I wouldn’t worry about it too much. Source—I do genomics work at a cancer lab.

gvhst• 7 years ago

Right, however in public its a bit more challenging to identify a DNA sample with the identity of its owner. One can get this via a targeted attack, yet this seems in the same spirit of going through someone's trash to find their bank statements.

highstep• 7 years ago

quick america! fix your health system before the insurance companies know all

dymk• 7 years ago

It's been illegal to discriminate health insurance based on DNA content since 2010

shakyshakyshaky• 7 years ago

And as we all know, insurance companies never do illegal things

drilldrive• 7 years ago

Anne Wojcicki, ex-wife of billionaire Sergey Brinand whose sister is CEO of Youtube is at the helm of the most invasive and extensive data set known to man. Don't fool yourselves: DNA databases form the bedrock of de-anonymization so crucial to the Surveillance State, containing the non-consentiory grounding of your existence and your lineage. And let us not forget the easiness of collection, for a sample of sputum suffices.

unixhero• 7 years ago

You can always fake your name when you submit the DNA. Then this doesn't really matter.

vajaya2• 7 years ago

or can you? you have your credit card information surrendered.

buboard10• 7 years ago

they have to mail it to you

vajaya2• 7 years ago

I regret taking their test with 200 bucks now. It used to be novel and years back, the concept of a totalitarian society with surveillance, database, social credit was still very remote

jdavis7032• 7 years ago

In the UK credit scores have been tied to social behaviors like voting. Similarly London has been famed for their CCTV system that allegedly keeps crime low. And let’s not forget the CompStat database system that is credited with turning NYC from one of the most dangerous western cities to one of the safest. My point is, that at least within the time range of cheap genetic tests, these “totalitarian” systems have already been in place.

qbaqbaqba• 7 years ago

voting

How?

lymeeducator• 7 years ago

The main priority of these medical and genetic companies is to make money. Safety, ethics and privacy are secondary until they effect the profit. It seems increasingly apparent that public funding and open source efforts are required to advance the science, healing and education of our planet.

DNA SNPs are one thing, but genetic expression (phenotype) is immensely complex due to the number of variables. For example, mammalian immune systems are highly redundant across the body and continually signal with cytokines and chemokines to manipulate the immune response that is internally/externally environment dependent. Our bodies continually work to remove/detox OR sequester pathogens, toxins, metals, etc. This usually results in isolated and/or systemic inflammation across the body. Many of the pathogens manifest with overlapping symptoms making it hard to isolate without better diagnostic tools. For example, my two strains of Bartonella cause inflammation in many similar areas that Lyme bacteria do and Babesia has another similar set. It is hard to isolate those symptoms from the mold toxins and metal (aluminum, arsenic, lead) buildup that I also have. Functional doctors believe the HLA SNPs play a role in accumulation rather than removal. Enter saunas/sweat tents/etc that many cultures used for centuries (lymphatic detox).

Enter public funding to invent better and cheaper measuring equipment where each of us owns the data. Privacy protection is also important. We live on a planet with immense biodiversity, albeit shrinking daily due to human activities, where we coexist with bacteria, pathogens, molecules, industrial toxins, etc -- It's time we start to learn more about everything ... gathering data in a coherent schema and applying ML can certainly help.

That is why there are a number of studies that list various pathogens in brain deposits for Alzheimers, MS, Giant Cell, etc -- Feel free to google and research many of the terms above and reach your own conclusions :-)

jnordwick• 7 years ago

This is so rude and self-aggrandizing: "Anne Wojcicki is 45 minutes late, something so encoded in her habits as 23andMe’s CEO that employees have stopped complaining about it. They know it’s hardwired. They know it’s hardwired. On a Thursday morning in April, her team is waiting patiently as she swirls into the company’s headquarters"

From the opening sentence, I already don't like her.

dang• 7 years ago

Ok, but please don't post unsubstantive comments here.

iandanforth• 7 years ago

I'm not a huge fan of GSK making money off this data, but I am a huge fan of having the data be available. Did you know you can download all your 23andMe data and make it publicly available through openhumans.org? Here's mine:

https://www.openhumans.org/member/iandanforth/

I want this data out there to help any and all researchers. The more free, public data exists the easier it is for researchers without GSK levels of cash to make discoveries and contribute back to the community. Just like OSS, someone has to be willing to give away something that has historically been sold. I'm willing to do that and I hope you will as well.

wpasc• 7 years ago

Thank you for being so open. I feel similarly about my own genes but I do not have them sequenced yet. A lot of people are talking about the security concerns and whose making money.

Valid concerns, but I think medicine does need vast amounts of genetic data available to actually make some progress. Medical progress is not advancing fast enough by some very real metrics (5 year cancer survival rate over 40 years is not at ALL impressive when you factor in diagnoses being made earlier).

Ownership of this data is important, but if genetic data was more freely shared I think medical progress would benefit.

maxheadroom3• 7 years ago

...but I think medicine does need vast amounts of genetic data available to actually make some progress.

How does more genetic data equate to better progress with medicine? Are we testing medicine against specific genome sequences, now? If so, how are we doing that without the source host[s] to test against?

Medical progress is not advancing fast enough by some very real metrics...

Again, I'm not seeing how these two equate, whatsoever.

For what you're talking about the genomes would have to be reproduced, such as the markers that are the precursors for breastcancer. Then, the tissues, themselves, would have to be reproduced and then you'd have an effective field with which to test new medicines against (unless you just use the people with the markers to test).

How you're getting from a mapped sequence to better medicine is... ...we're simply not there, yet, technologically, I believe. Unless you know something I don't? (Which could very well be the case, admittedly, but I doubt we're at the stage of computer models for genome engineering, tissue growth, cellular division, etc. all in one.)

appleiigs• 7 years ago

researchers can get genetic samples/data without it being personally identifiable. No need to dox yourself.

breck4• 7 years ago

Very cool! Early adopters like you who blaze the trail in the face of uncertainty are crucial to making breakthroughs in healthcare.

c3534l• 7 years ago

Why isn't this protected medical information?

puskavi• 7 years ago

Good luck getting an insurance when they got your DNA

eristalt• 7 years ago

I recently interviewed with a 23andMe employee and specifically asked about the company's concerns regarding the public's perception of data privacy. The 23andMe employee was absolutely adamant that 23andMe would never sell customer data or allow anyone else access to it for commercial reasons. They said it went totally against company principles and that the company cares deeply about it.

And now this. I wonder if that employee was just not very attentive to what was actually going on, or perhaps the company leadership deceived the rest of the company? Or maybe this is just yet another example of a once-noble company inevitably succumbing to the allure of "growth at all costs".

ryanmarsh• 7 years ago

Some time ago a friend who works at a biotech startup in the DNA sequencing space told me there’s no way 23andMe’s price covers the sequencing cost and that they must be subsidizing the kits so they can sell the mined data later.

rando444• 7 years ago

Wojcicki was also building out an in-house drug-research group and tapping into a new revenue source: recruiting thousands of patients from 23andMe’s database for pharmaceutical firms’ clinical trials.

This is the most responsible way to use the data.

The way this model works is that a pharmaceutical companies have a question that requires a genetic database to answer. They then pay 23andMe for the results of these tests.

23andMe does not have to give up any customer data to any third party and can at the same time build a solid business model around using their data for positive medical advancements.

sonnyblarney• 7 years ago

- Business model? "... generating an estimated $475 million in revenue for the company, which has yet to turn a profit."

- Medical legitimacy? “Effectively what you have is a technology that is neither that helpful [nor] that harmful (...) Dr. Jonathan Berg, a clinical geneticist at the University of North Carolina at Chapel Hill."

- PR Signaling? “It was so unacceptable to her as a compassionate human,” says Ashley Dombkowski, (...) “She is undeterred by massive, worthwhile problems.”

- Personal Branding? Cue the Jobs-esque clad-in-black shots.

- 'Certainty' in the face of material uncertainty? "By October 2013, 23andMe was in talks with Target and Wojcicki was pushing hard to enter stores before the holidays (...) Emily Drabant Conley, recalls Wojcicki’s certainty when an exec thought it was impossible to meet the time line: “Anne was like, ‘This is a company that was founded on impossible.’” But in the end, impossible won. It would take three more years for 23andMe to get onto Target’s shelves. "

... so where have seen seen this before?

I'm glad that Forbes is taking a slightly more skeptical tone this time, at least calling out some of the issues and not taking PR at face value.

I actually hope they are successful, though I'll never participate due to obvious privacy concerns.

How Anne Wojcicki’s 23andMe Will Mine Its Giant DNA Database

Related Stories