23andMe's Fall

This is a damning indictment of Wojcicki's management of the company. Failed execution on the drug development strategy over 10+ years, lying about growth, pushing out the cofounder, never making a profit, hack that went undiscovered for months ... about the only area she's had success is raising money and that's in large part thanks to being a member of the Silicon Valley elite.

If she can't convince her family, friends, and connections to pony up more cash, the company will likely be sold as the DNA and profile information has real value. I worry that it will go to PE (like Ancestry.com) or a global data broker that will strip-mine the assets in every evil way you can imagine (and maybe even some we can't).

If they go bankrupt they should destroy all the data but of course they will rather sell it to recover at least a bit of money.

If they file for bankruptcy, they cannot legally destroy the data. The data is a salable asset, the law requires them to preserve it so that it can be sold and the money returned to creditors. And many of the promises they have given about it's use can and will be broken by the trustees dissolving the company.

The thing you need to consider when you give data to a company is not "will these people misuse this", but "once these guys go bankrupt and sell the data to the highest bidder, can it be misused?". See, for example, how if your company holds a large mailing list, it will typically be sold to a spam operation for a few bucks.

The minimum standard for giving serious personal information, like your DNA, to a company needs to be that the company receives a limited-time license to handle the data for the purposes they need to provide the service, and absolutely nothing more.

My mom, dad and sister have all done 23andMe, so it doesn't matter if I have or not. They have an entirely complete genome for me.

I agree with your limited license idea. It's just not ok that something like that can be dischargeable in bankruptcy. We don't have the ability to refuse consent in the first place, if our family provide it.

That's a lot of information, but it is in no sense a complete genome. It does mean that someone who had that information could prove that your DNA belonged to a child of your mom and dad with high accuracy, or that you were a sibling of your sister. It also reveals that you don't have certain mutations, or that you do have a few.

But where your parents have different SNPs, there's no way to derive which of them you inherited. What you said is a bit like saying that, because you know all of the cards in a deck of playing cards, you know what hand someone is holding, except in a counterfactual world where there are 10,000 possible cards and you know that a deck only has 52 of them.

When people describe DNA as PII, I don't think they imagine being involuntarily cloned (yet..), I think they're imagining heritable conditions becoming public information through data leaks.

People have a right to privacy from imprecise yet correct information about themselves. Someone wouldn't want to explain an abusive parent to a prospective employer, but they could see a strong tendency to, schizophrenia, with DNA data leaks.

Be that as it may, you said they have an entirely complete genome for you, which they do not.

How can they link your family's DNA to you if they don't have a profile or account for you? How do they know you exist? And if they know you exist, how do they know you are related to that particular family without some DNA information about you to link to them?

OSInt will happily fill in the rest. Even if you don’t have a social media footprint, your family does and they shoved their contact list, with you in it, to Facebook 10 years ago.

This makes me wonder if there could be strong enough laws around protecting genetic info (for example penalties that pierce the corporate veil) that those with fiduciary responsibility to the company could argue that destroying the data is really in the shareholders' best interest.

I'm completely uninformed in this area. Is there precedent for anything like this in the modern day?

Upgrade this to any medically adjacent data. ALL of the DNA data should be covered under HIPPA or something similar.

Genetic information is PHI and is already covered under HIPAA. The problem is that, like most companies, 23andMe isn't a HIPAA covered entity. Because they're not a healthcare provider or health insurer, it doesn't apply to them.

Genetic information is also controlled by other laws such as GINA. So it is already some of the most controlled health data there is. But that's not a very high bar in the US.

It'd be fun to watch what would happen if data shared with services giving health advice fell under HIPAA.

It's not even really that unreasonable, if they want to advertise that they can provide health information, they don't get to pretend that they don't.

The data is a salable asset, the law requires them to preserve it so that it can be sold and the money returned to creditors.

This would depend on the terms you agreed to at the time you signed the account and submitted your data. I'm aware a lot of companies like to bury marketing disclosures under a busload of T&Cs. But if you didn't agree having your marketable data allowed to be sold the sale the to creditors can't backdoor it in. They can only reach out to you to opt into new terms, which you should refuse.

Remember that it's good opsec to rotate your genome every six months.

That's hilarious. I'm imagining CRISPR as a tool to scramble your DNA every so often.

That sounds like a terrifying cyberpunk novel that I would definitely read. Although I hope the future is not that bleak.

Reminder of the film Gattaca which explored some of the risks of leaking your DNA in a future dystopia.

Such a good movie. (If a bit slow paced.)

Excellent movie. Did not see it when it was released orignally, but discovered it by chance going through the tv channels. A real gem.

Also you have to have a genome with at least one uppercase, one lowercase, one number and one special character that isn’t \/‘` or ”

Someone should do a genome manager startup

I would expect that you have a right to get your data deleted.

I do too. That's why I've refused to use the kits I've been gifted... I assumed the fallback here was to build up a cache of data to sell.

I'd be nice if they could be prevented from doing that, possibly by the court system.

Selling it is not a problem for the same reason they can't make a profit from it. It's not worth much.

(They do have valuable data, but it's the survey answers and friend and family connections. Nobody really cares you have a G at SNP 12213244243.)

Well, nobody is really interested in the test to find out they have G at SNP 12213244243 either. They do it specifically to get the ancestry, health, and potential physical bias type information you mention - that's the only real data anyone is talking about when referencing the test. Plenty of companies would love to have that kind of data to target users with.

The real killer would probably be around how useless healthcare regulation could make having most of that data. I'm not sure how far that really extends or what you manage to sign away by sending in your sample though.

That's kind of what I mean by it not being worth much though. Sure, leaks are embarrassing - the most common issue here is finding out that your dad isn't your real dad.

But it's not useful for evil purposes because it's not /accurate/. It doesn't reveal all that much real additional information about your ancestry and health!

Since it's decided before you're born:

1. its effects are mostly already expressed and people can know them either by looking at you or (like life insurance) by making you get a medical exam before buying their services.

2. it can get out of date for cultural reasons. Your biological ancestry isn't always how you behave, like if you're adopted. Whereas last name + zip code is a pretty good predictor already.

But 23AndMe does have a lot of that information about their customers. The reason they have it is because they asked for it in surveys.

Strongly disagree. Through 23andme, I was able to confirm that I have the mutation for the MTHFR gene, which explained why my vitamin B12 always ran low. Once I started supplementing with the methylated form of B12 and folic acid, I noticed a huge improvement in how I felt vs when I used cyanocobalamin for B12. Not to mention some very interesting side effects, like improved tolerance for caffeine.

I had this same issue. I bought Pure Encapsulations Adenosyl/Hydroxy B12 and Thorne Research - 5-MTHF 1 mg Folate from amazon but never felt any different.

Was my B12 a dud, does everyone with this marker see improved results after supplements?

Are there any downsides to this, of couldn't everyone take those without asking first? (aside from cost)

But it's not useful for evil purposes because it's not /accurate/. It doesn't reveal all that much real additional information about your ancestry and health!

I'm not actually convinced that accuracy is all that important to the value of personal data. Or perhaps I should say I don't think think there's an accuracy floor at which the value drops to $0.

Not in the field, but i would assume the data is combined to create profiles to be used to infer data about other people with similar data, so now they have dna into the profiling mix. And in combined I mean the rest of your digital footprint from other sources, not a survey on 23

The health data is pretty underwhelming for most people, outside of a few highly studied genes like BRCA variants. I did a genetic test and it reported that according to one study I had something like a 3% risk of a shoulder injury which is higher than the population average of 2%. So what am I supposed to do with that information, wear shoulder pads or something?

No, but in theory, an insurance company could use this to calculate your risks differently. Even a 1% signal isn't worthless.

Due to GINA, medical insurance companies aren't allowed to use that data for setting rates or denying coverage so it's useless to them. In theory life insurance companies could use it, but at the scale they operate it's not worth the cost.

Isn't there significant value in the medical information, deciding who to offer insurance to and who to refuse to cover in the event that Republicans gain control of the government and repeal the Affordable Care Act?

No, because health insurance companies already know perfectly well what health conditions you have, since they can see your medical spending.

After all, they didn't need your genes when they were denying care in the 90s.

But is it bad for there to be a cache of data for research? I don't even care if they make a great profit because if there's a great profit to be had it means that some drug came out of the research. While I'm generally cynical about many of the drugs, I do like the fact that the industry tries hard. Eventually they'll make something I want to take. And if this data helps them, all the better.

My suspicion has always been that this sort of data–common SNPs from all comers and no specific phenotype collection–is not very useful for any sort of drug design. And if it is, publicly available data will be just as good as 23andMe's larger amount.

It was a bet worth trying, IMHO, but always a risky bet. And with bio, you don't find out if your bets work for a decade or more, because the iteration cycle is 10x slower than software for businesses/consumers.

My suspicion has been that SNP array data is not that useful for drug discovery. They’re targeting the most common/variable SNPs, which I suspect don’t have a large health effect (except for maybe late in life, otherwise how would they get passed down). I would suspect the more valuable targets would be rarer, or arise de novo (as is common in cancer, eg driver mutations).

The effect size of common SNPs is not informative about the effect of drugging their related genes. For example, the common variants near HMG-CoA reductase have very small but significant (confidently nonzero) effects. Yet drugging HMG-CoA reductase can reduce LDL cholesterol by ~40-50% (statins).

deCODE Genetics, whose history is very interesting and worth reading [1], was bought by Amgen based on this premise.

Note, however, that SNPs like the one you pointed out are relatively infrequent. Amgen was expecting a two digit % improvement in their pharma pipeline by using GWAS insights.

[1] https://en.wikipedia.org/wiki/DeCODE_genetics

Note, however, that SNPs like the one you pointed out are relatively infrequent.

If you mean that SNPs with small effect sizes don't always point to useful drug targets with big druggable effects, that is possible, but this remains an open question and is the subject of intensive research right now.

Yes, I agree. The trick is probably to find cell-specific SNPs located in regulatory regions so that there are no off-target effects. Massive screens using single-cell perturbations will help to gain some insights.

You’re right that rarer SNPs have big effect sizes. However the problem is that they’re rare so you don’t make much money treating ppl with rare diseases.

There are SNPs that have significant clinical impact and alter the downstream translation and associated with poor outcome.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8129253/

They could help in stratifying patients and strategically targeted therapy. They can't be easily targeted (drugged) drirectly but they could lead to therapeutics if I understand correctly.

This is a damning indictment of Wojcicki's management of the company.

I mean she was leader of YouTube. Why wouldn't she be able to develop a drug development strategy based on genomics?

But hey, rich people can do anything right?

That’s her sister of famed “owned the garage Google started in” lore. This is the sister that was married to Larry Page.

Married to Sergey*.

I believe she was married to Brin.

Wrong person

what's PE? (edit: private equity?)

Yes you're correct, Private Equity.

thanks

I want to learn the secret dark arts of VC capital raise on lies. I don't need the money but more for the hacking.

Unending confidence and carefully curated reality distortion fields. Having watched the CEO at a previous job do it, it's infuriating and a gigantic pain in the ass for engineers to have a leader lie to investors and then have to deal with the fallout as deadlines approach.

Try marrying a billionaire.

such a dystopian outcome that peoples DNA and medical information is just going to be sold?

I worry that it will go to PE ...

Or maybe Palantir.

There are 3-4 companies like Invitae (and not 23andMe) that genetic counselors send their tests to for analysis and treatment coordination with the MD.

Like another comment said, I think the DNA data 23andMe gets from their swabs and analysis is likely inferior from a drug-dev standpoint vs. what the pro firms do linked with the genetic counseling teams.

In that light, 23andMe's options don't look good. However, probably good news for the patient. As I was told by a genetic counselor at one of the main hospital systems that do this, a bulk of their work is rolling back expectations from patients who did 23AM first, and then when to a GC.

Agree. Everyone should be requesting to have their information deleted from their platform.

It's all going to come out in discovery. She used to work for a hedge fund. Data collection and disregard for other peoples' privacy runs in the family.

To create a recurring revenue stream from the tests, Wojcicki has pivoted to subscriptions. As media companies launched streaming “+” channels, Wojcicki rolled out 23andMe+, offering personalized health reports, lifestyle advice and unspecified “new reports and features as discoveries are made” for an initial $229, with annual renewals of $69.

I was a heavy believer of 23andMe until this point. I answered all of the available research questions, which was a thing that took absolutely hours and was filled with semi-invasive medical questions. I did this under the premise that I would hopefully be helping research and I felt really rewarded having completed all of them. Then, they dropped the + bombshell and I felt really rugpulled. I paid them for genotyping on their v4 and v5 platforms -- so I paid twice, I referred friends, I bought people kits, I helped research...and now I was being asked to pay a subscription for what I was promised to begin with? Eesh.

I think the fundamental issue is that when the FDA stepped in and told 23andMe to cut back on their reporting that they really hit a roadblock. Promethease always gave better results than 23andMe, but when that happened it commoditized genotyping fully. Just download your data from any provider and use a third-party tool and you're set.

Fast forward to 2024 and they're stuck with a platform that's semi-limited and they haven't delivered on any of the research deliverables that many people wanted in the first place. The idea of getting new genetic reports monthly was appealing and simply never materialized. It's no surprise people aren't hot on this as a business -- but what is surprising is that they were completely passed by startups like Nebula Genomics in offering whole-genome sequencing and competitive data access. I think the stored data they have is their only advantage, but they don't seem to know how to leverage it.

As someone who paid for 23andme+, it was pretty much a scam anyway, I got maybe 4-5 more reports over the year, all of which were for random popular ailments like "Anxiety" where the link between your genes and the disease(?) are pretty dubious in the literature and the takeaway was "you are 5% more likely to experience anxiety".

where the link between your genes and the disease(?) are pretty dubious in the literature

This is inescapable; genetics usually can't show causation, for instance because you can't do an experiment where you change someone's genes.

Geneticists seem to deal with this by using statistics like GWAS that are obviously just correlation, adding a sentence that correlation doesn't show causation, and then just proceeding and pretending like it does.

Please have some awareness of how little thought you are putting into dismissing a field where thousands of very smart people are working on solving the problem you describe. In fact, you can correct for the exact problem you describe with sibling studies where people have the same environment but different genes.

Have maybe a small ounce of humility in this respect.

Please have some awareness of how little thought you are putting into dismissing a field where thousands of very smart people are working on solving the problem you describe.

Thousands of very smart people do a lot of dumb things. People still work on string theory. The people working on proper causal inference are also smart, work hard, and have Nobel Prizes.

https://www.nobelprize.org/prizes/economic-sciences/2021/pop...

On the other hand, the people doing genetics who aren't careful about it produced the 23AndMe report which says I have a "17% chance of having green eyes". Against what counterfactual?

In fact, you can correct for the exact problem you describe with sibling studies where people have the same environment but different genes.

"Correcting" is a wrong way to think about it. Generally speaking, overcorrection is worse than undercorrection because of collider bias. You need to choose a study design that's correct in the first place.

You're describing a natural experiment, which is better than a GWAS of self-selected 23AndMe customers, but does have problems (silly one: selection bias because the sample only includes people with siblings) and more importantly is only guaranteed in the study environment (eg people who live in the UK in 2008) but gets reported without identifying what that environment is.

> > In fact, you can correct for the exact problem you describe with sibling studies where people have the same environment but different genes.

> You need to choose a study design that's correct in the first place.

That's precisely what a sibling study is: a study design that's correct in the first place, as far as the problem we're discussing goes.

> You're describing a natural experiment

That is correct: a sibling study, which corrects for the problem we're discussing, often contains aspects of a natural experiment, namely that the siblings tend to naturally be siblings, rather than raised together purely for the purpose of a study :)

Only showing correlation is one thing, but if the correlations themselves are barely noticable then that's a big problem for making a useful report.

Though if you find whatever gene is most correlated with something, what are the options for it not to be causation? If the chance of causation is high enough, it makes sense to proceed as if the risk is real.

When I said correlation isn't causation I meant it. Neither high nor low correlation is evidence for causation.

There's a more advanced form of being bad at this where you think you can show causation by controlling for everything in the environment. This is also wrong; it produces something called collider bias.

Though if you find whatever gene is most correlated with something, what are the options for it not to be causation?

1. It's a coincidence and it's never causal.

Imagine an OSS project releases a bugfix and you diff the old and new versions. (This is basically GWAS.)

The bugfix part of the diff caused it to be fixed. The updates to the copyright dates or changelogs didn't.

2. It's causal, but the causal chain involves a specific environmental factor, and we should change that instead.

For instance, you can say every human has a genetic disease that prevents them from producing their own vitamin C, which most other mammals can do. But instead of calling scurvy a genetic disease we just eat fruits and vegetables.

1. It's a coincidence and it's never causal.

Half the point of analyzing statistics is to filter out coincidences, and that applies to correlations too. If something is a coincidence, it won't hold up as a proper correlation under reasonable amounts of analysis. So when the premise is we're starting with correlations, I think it's alright to assume they're mostly not coincidences.

The bugfix part of the diff caused it to be fixed. The updates to the copyright dates or changelogs didn't.

In that case the bugfix is the "gene most correlated", isn't it? Give it a few generations to randomly spread, and the signal will be far stronger on the bugfix gene than on the copyright gene. (And if it hasn't been spreading for generations then you won't have enough samples to find either gene.)

2. It's causal, but the causal chain involves a specific environmental factor, and we should change that instead.

For instance, you can say every human has a genetic disease that prevents them from producing their own vitamin C, which most other mammals can do. But instead of calling scurvy a genetic disease we just eat fruits and vegetables.

If you're testing just humans, you'll get a 0% correlation because everyone has that gene.

If you're testing across mammals, then "WARNING: Prone to scurvy". Which is a completely correct and causal result about a genetic problem, with easily accessible treatments.

So, I don't understand your example at all.

Sure, perhaps that was a bit too succint. What I mean is that, as a customer of 23andme, I'd much rather know about some known genetic disease that I may or may not have than about wide-ranging things that affect everyone like stress and anxiety. It's just not as serious.

23andme went with the "only give very limited information" which I respect but is ultimately pretty much useless compared to just running your data against dbSNP and telling me that I have this or that marker for this or that disease backed by this or that paper.

"10% more likely to experience anxiety, once having clicked on this useless link"

think the stored data they have is their only advantage, but they don't seem to know how to leverage it.

I really wonder what happens to that data if they get acquired or shut down. The possible new owner of the data might have a completely different business case in mind. This scenario is something you usually don't consider when you give your data to a company that you trust at the moment.

Like selling it to insurance companies who can use the data to deny coverage.

This is illegal, at least in the US.

Illegal for health insurance companies. But not so for life insurance, or disability insurance or long-term care.

If they wanted to use that information for underwriting they'd just make getting a genetic test a prereq before underwriting the policy.

And if they wanted easy cash they'd "just" make you pay $500 as a signup fee.

Which is to say: No they wouldn't just do that, it would cut their business too much despite being a way to make more money per client.

But getting it from a company that already has it avoids that downside.

It's illegal in some US states like California. The California Genetic Information Privacy Act prohibits these companies from disclosing a consumer’s genetic data to any entity that is responsible for administering or making decisions regarding health insurance, life insurance, long-term care insurance, disability insurance.

No need to wonder, imagine the worst case scenario and assign it a non zero probability.

This scenario is something you usually don't consider when you give your data to a company that you trust at the moment.

Why would you not consider it?

As an added security measure, we have temporarily disabled the ability to download your raw genetic data. We hope to re-enable this ability soon, and we appreciate your patience.

Apparently 23andMe doesn't let you download the data anymore, I just tried. I wanted to give Promethease a go, seems interesting.

I couldn't find it either. Fortunately, I downloaded the genotypes in July.

"We have temporarily disabled raw data download as an additional precaution to protect your privacy. We don't currently have a timeline for when this feature will become available but will keep customers informed of any changes."

Wouldn't laws in certain jurisdictions require them to allow you to download your data?

Promethease is why i initially did 23andme, and it was beyond worth it for me personally.

But for the same reason I'm just a one time customer, all I needed was for 23andme to give me a very expensive hospital test at a 95% discount, and I didn't need them anumore

Can you explain how you got a 95% discount?

They are comparing with a full DNA sequencing when going through a hospital.

Is there a Promethease equivalent for ancestry data?

yTree would qualify: Small one-time fee, no subscription needed, simple but good results.

there's this for example, not as open as Promethease but similar in that it's "bring us your data and we'll give you new analysis on it":

https://yourdnaportal.com/advanced_ancestry_analysis

She’s sticking to her goal to transform 23andMe from a supplier of basic ancestry and health data into a comprehensive healthcare company that develops drugs, offers medical care and sells subscription health reports.

The company hasn't the funds (or time) to develop drugs and I'm not sure why any investors would invest in them rather than a company with a track record of doing so or a potential drug.

Selling their customers data to other companies (or partnering with) that can create drugs from it would seem the logical choice, along with "subscription health reports" and anything tacked onto the DNA/blood profiling/testing product to keep the data coming in.

I would have thought they were pretty well positioned to find new targets for currently untreatable diseases. But maybe they don't quite have the capacity needed to target specific diseases and/or data not granular and clean enough, or not enough capital/runway suitable for that kind of stuff. If they had the sequences for people with diseases such as alzeimers/Parkinson, they could just look for common mutations and see what specifically it affects

It is not like they are doing real genomics. It’s devilishly hard to find genes responsible for conditions like schizophrenia, heart disease, asthma, diabetes, etc. The last thing you need is mountains of low quality data.

Attempting to discover drugs is a proven way to make a small fortune by starting with a large fortune. Everything north of the Charles River in Boston would vanish if people stopped believing though.

I don't think 23andme's strongest asset point would be in direct drug discovery, but rather in helping target sub-populations for clinical trials. The SNP data that 23andme has is relatively low quality compared to proper sequencing, but (combined with their survey data) is probably at least as good, or better information available for typical clinical trial planning or screening.

I don't think 23andme's strongest asset point would be in direct drug discovery, but rather in helping target sub-populations for clinical trials

Was there an issue with targeting sub-populations for clinical trials beforehand?

At an ELI5 level, if you're hoping your drug candidate will help cure disease X, you sign up patients with disease X to join your clinical trial. That's not the hard part!

(source: family member works at $bigPharma)

The two (related) cases where you'd perhaps want genetic information is:

a) If you suspect there is a significant pharmacogenetics component to what you are studying (or related to disease progression).

b) You're working on something preventative.

From a previous job I worked at (we made PCR tests), there was interest on screening for APOE genotypes to enrich an Alzheimer's drug trial - drug maker believed that APOE genotype would have a significant impact on drug performance.

But you're absolutely right that you can often (usually?) do 'enough' enriching without genetic information.

My understanding is, ideally your clinical trial manages to capture or balance out the different potential factors in genetic variation.

An example of this is when they tested the covid vaccine, they wanted to make sure they had enough participation from African American and other ethnicities since these were usually under represented in clinical trials relative to the population, and there are sometimes subtle variations in the way peoples body respond to drugs depending on their race.

mountains of low quality data is often enough for deep learning

I would have thought they were pretty well positioned to find new targets for currently untreatable diseases

To find new targets yes but to develop a drug to market (and revenue/profit) takes 10-15 years. Even a drug to a state that gets approved for human testing seems beyond what they could do themselves without so much funding it would wipe out the existing shareholders. Selling to/Partnering with other drug companies with targets they've discovered/IP from DNA etc would seem more realistic.

https://investors.23andme.com/news-releases/news-release-det...

I would say target discovery is definitely no less important than drug discovery though. Biology is so complex, for a lot of diseases we aren't even sure the targets and pathways are valid. But then again, as per another commenter, I guess it's much harder than it seems, and probably not as easy to monetize as a drug

I think they’re about as well-positioned as some guy with an idea for an app.

It would be far smarter for them to try to sell the data to drug companies.

In the words of Boromir: "One does not just become a drug company."

It would be far smarter for them to try to sell the data to drug companies.

Haven't they already been trying this ... for years?

(Way back in 2018): "GSK and 23andMe sign agreement to leverage genetic insights for the development of novel medicines"

https://www.gsk.com/en-gb/media/press-releases/gsk-and-23and...

I wonder why that didn't work out for them...

Perhaps, to again (mis)quote Boromir: "One does not simply leverage genetic insights"

That goal sounds like a goal you have to raise funds, not a goal you have to actually do the thing.

Perhaps ok for a startup, not ok for a many years old established company.

Roelof Botha, a 23andMe board member and partner at Sequoia Capital, said the company’s big-spending strategy made sense when money was cheap. Now that it isn’t, “we’ve had to trim and focus on a smaller number of projects.”

Sequoia, which invested $145 million in 23andMe, still holds all its shares, he said. Today they are worth $18 million.

Interesting that they weren't forced to liquidate/distribute the shares to their LPs

That would impede their plan to sell 23andMe, including its DNA database, to China (or Russia, or Antarctica, or the next Martians that happen along).

Why would russia or aliens ever pay for it, when they can just steal it?

Right. And they have enough of DNA themselves!

The aliens collection method is not as appealing to the end user, tho.

Dude the Martians need human DNA.

Maybe they are compelled to pay for it by an intergalactic ethics code created by the Apache foundation.

I smell a conspiracy theory.

When there are perfectly good intelligence agencies to sell to at home? /s

Oh they've already sold it to those folks.

The problem with all these conspiracy theories about selling your DNA results is

1. your DNA results are not interesting to anyone even if they're evil.

2. if someone wanted your DNA in particular, they just need a bit of your hair, so there is already absolutely nothing you could do to stop them.

in 2021 Sequoia switched their strategy to hold on to stock of their portfolio companies for few more years after IPO.

"Sequoia is abandoning the 10-year venture fund, in which limited partners, the outside investors that contribute to the fund, expect to get paid back over a decade. The firm said it’s establishing a single fund, the Sequoia Fund, that will raise money from LPs and then funnel that capital down to a series of smaller funds that invest by stage.

Proceeds from those funds will feed back into the Sequoia Fund. With no time horizon, Sequoia can hold public stock for longer stretches, rather than distributing those shares to LPs. Investors who want liquidity can pull money out instead of waiting for distributions."

https://www.cnbc.com/2021/10/26/sequoia-changes-fund-structu...

Ah permanent capital vehicles... forgot Sequoia did this too

It could've been liquidated and reinvested into a continuation fund.

I don't know what specific deals they have with LPs, but why would it make a priori sense to force the fund to liquidate some specific shares and distribute the proceeds?

I would imagine that any fund is allowed to make losses on specific investments, least of all a hyper-aggressive VC fund which will create losses on many (most) positions, by design. And then once losses happen they should be treated for what they are - just another position where decisions should be made based on the outlook, and not based on the history.

Now we get to see the compromises they choose when desperation sinks in.

I think getting the results of one of these tests would be interested, but I haven’t been able to bring myself to do it, due to trust issues related to handing over something like that to a company with an unproven track record when it comes to privacy and integrity. I figured it was only a matter of time before they were hacked or they decided to sell out their users for profit. They’ve already been hacked, so now it’s time to see what they willingly do with that data when their back is against the wall.

I wish I could get a test done by a lab, be given the results, and have that be the end of it. No accounts, no forever records kept by the lab/company. Just a simple testing service that isn’t trying to be a tech company.

Repeating a comment from 2021[0]:

“Entrepreneurs are not at all like ordinary businessmen. An entrepreneur who is not in trouble closes no avenues, keeps a lot of balls in the air, and will never tell you the whole truth when a half-truth will do. An entrepreneur who is in trouble will lie, cheat, and steal. He will smuggle cocaine or ship bricks. We should never measure an entrepreneur by the standards of a rock-solid businessman.” — attributed to Kenneth Rind[1]

[0]: https://news.ycombinator.com/item?id=28060166

[1]: https://books.google.com/books?id=MQvGc8Ee1SsC&pg=PA137&lpg=...

All of the rest of the quotation makes sense to me, but I'm wondering about this part:

"We should never measure an entrepreneur by the standards of a rock-solid businessman".

Is the author saying that a rock-solid businessman follows a higher code of ethics?

The sentence immediately preceding your quote are things that a "rock-solid businessman" would never do according to Rind. So it sounds like he is saying that theoretical person has a higher code of ethics for whatever reason.

Because they're intending to be around for the next decade or more, they need to preserve their appearance of probity, and so they'll do fewer things which would make them look bad.

I guess it depends on what he meant by “rock-solid.”

I guess it depends on what he meant by “rock-solid.”

Exactly.

There's more than one kind of rock-solid.

Someone who is a rock-solid entrepreneur will not lie, cheat, or steal whether they are in trouble or not.

OTOH an "ordinary" non-entrepreneurial businessman may just be one who has not faced trouble (may also have a lot less risk of that) and not started to lie, cheat, or steal. Yet. But may do so any minute at the drop of a hat and you would never know.

No need for a difference in codes of ethics, rather different kinds of rock-solid for thee than me.

It's easy to remember when Enron was a rock-solid client, packed with ordinary businessmen from ordinary business schools and typical backgrounds, until one day it wasn't. Wasn't rock-solid that is, and able to pay. All the businessmen there remained ordinary after that regardless, except for the few whose ethical transgressions were among the "unavoidable handful" for which there were serious legal implications.

Rock-solid businessmen understand business and how it works. Nothing personal, only business.

Entrepreneurs are strongly driven by ego, their identity is personally tied to the thing they’re doing. There is immense pressure to succeed, not just for the money, but for their personal validation. It’s not enough to succeed, people must see you succeed.

Otherwise, they’d just open some boring small business no one cares about instead of a hot new startup.

I haven’t been able to bring myself to do it, due to trust issues related to handing over something like that

Same here. Imagine the value of this data in the hands of insurance companies that are willing to misuse it. Will we, as a society, be able to prevent that "value" from being realized?

Federally, health insurers cannot use this data under GINA[0] and SB41[1] in California requires explicit permission be granted by the customer in order for the data to be shared with 3rd parties. In general, however, insurance companies are going to be reluctant to trust this information as it’s not established that it has real medical value outside the handful of markers we’ve clearly identified.

[0]: https://medlineplus.gov/genetics/understanding/dtcgenetictes...

[1]: https://leginfo.legislature.ca.gov/faces/billTextClient.xhtm...

Oh, it's against the law! Well that's ok then, companies never break laws.

In reality, there will be (and probably already is) an impenetrable web of "data aggregators" buying genome data from other aggregators who are buying it from still other aggregators, so that the info will be thoroughly laundered by the time it actually gets to the insurance company to hike your premiums. This both obscures its true origin and lets there be a little contractor to throw under the bus when discovered and deflect blame. Don't fucking kid yourself: if personal genome data is useful, it will be used, no matter what the law says.

There is no need to break the law if your pockets are deep enough to write it yourself.

I'm more worried about a scenario like Elon Musk buying the company for the data and making the data available to extremists who would love to target people of certain ethnic backgrounds who happen to be in positions of power.

I wish I could get a test done by a lab, be given the results, and have that be the end of it. No accounts, no forever records kept by the lab/company. Just a simple testing service that isn’t trying to be a tech company.

EMR has put paid to this pretty handily. Every positive STD test anyone ever gets from now on is yours for the taking if you can crack LabCorp's database.

Seems like 23andMe is two businesses: consumer and a B2B data business.

The consumer side is clearly struggling because of the problems mentioned in the article (they only need one test in their life, public perception is bad because their security has had breaches). So this needs a pivot where you can change the public's perception from a one-time test to continuous health monitoring through blood markers or something similar, expand to tests other than genetic and make it a repeatable, accurate test that gives you more information (and obviously stop leaking people's data).

But why not focus on the B2B side? Sell access to their databases. I'm sure computational biology and/or pharma companies need this information. It makes sense to do vertical integration by manufacturing your own drugs, but not for a cash-strapped business that has little incoming revenue to sustain further development. Presumably they are selling their genetic data, but I don't get why it's not giving them a revenue stream. Let GSK manufacture the drugs using your genetic info, with a profit share for any drugs made this way. They mention a collaboration with GSK in the article, but why was this stopped?

needs a pivot where you can change the public's perception from a one-time test to continuous health monitoring through blood markers or something similar, expand to tests other than genetic and make it a repeatable, accurate test that gives you more information (and obviously stop leaking people's data).

"Stop leaking data"? Sounds like a step forward.

But why not focus on the B2B side? Sell access to their databases.

So, it's actually: try to sell your customers' data instead of leaking it? :O

Sorry if that sounds snarky, but are we sure there are enough customers who want to pay to give their data to a company so that company can immediately sell their data on to other companies?

That's the conflict at the heart of the business. But do the public care enough about that? Obviously a HN audience does, but people use Google and Facebook products every day with the awareness that all that data is sold directly to advertisers. With the right messaging ("yes, we sell your data, but it's to drug companies to help make drugs that can cure your illnesses") it's possible that the conflict isnt too much of an issue.

Drug companies pay pretty well for clinical trials, so why would anyone pay 23andme for their own data, so that 23andme can turn around and sell it to drug companies?

These are different scenarios, clinical trials are experiments not just genetic information gathering.

i mean, customers are angry if personal data leaks, but a lot of legit usecases can be done with agregate data.

> But why not focus on the B2B side? Sell access to their databases. I'm sure computational biology and/or pharma companies need this information.

Are you sure?

I mean, presumably there are different types of DNA testing. Doesn't 23andme run basically the cheapest test they can get away with? A user can't tell if the test measured 16 bytes or 1.6 gigabytes of genetic information, and if I was trying to launch a consumer DNA geneology service, I'd want to get network effects, so I'd want a test that was very easily affordable.

Who says their records are thorough enough to be valuable to drug companies?

You make a good point. It's possible it's not useful to them and that's why they can't generate enough revenue from it. I assume the sales pitch to pharma is that it's a wide database, rather than deep.

Doesn't 23andme run basically the cheapest test they can get away with?

No. That's part of why they're test is so expensive and their financials are so lackluster. They are apparently using a customized version of the lllumina's Global Screening Array according to their website and several other sources that show up in search results. That's a legit research quality genotyping platform from a world leading laboratory in the genetics space. This post from 2020 has a decent high level overview about it in the context of 23&me [0] though it might be slightly outdated by now and I've never heard of the company (xcode?) that wrote it (nor did I bother to look at what their product is.)

If I was trying to launch a consumer DNA geneology service, I'd want to get network effects, so I'd want a test that was very easily affordable.

That's a pretty neive perspective. It ignores the value propositions of 23&me's product, economies of scale in the direct to consumer genetic testing space which were in large part enabled by 23&me's success, and all of the thorny bits related to questions about accuracy when presenting results. Not to mention that 23&me certainly capitalized on the network effect (which is being criticized a fair amount in this thread.)

Who says their records are thorough enough to be valuable to drug companies?

GSK. See my other comment in this thread [1]

[0] https://www.xcode.life/23andme/23andme-v5-chip-dna-raw-data-...

[1] https://news.ycombinator.com/item?id=39202583#39204621

The real value they tried to build was in pharma, which is much more lucrative than either of those. Their data is somewhat interesting but limited by the lack of rich phenotypic/clincial information paired with the genetics.

Presumably they are selling their genetic data, but I don't get why it's not giving them a revenue stream. Let GSK manufacture the drugs using your genetic info, with a profit share for any drugs made this way. They mention a collaboration with GSK in the article, but why was this stopped?

In 2018 GSK made a $300M equity investment in 23andMe as part of a 4 year collaboration (with the option to extend for a fifth year) under which GSK had exclusive access to their data for use in drug target discovery programs, but [0]:

All activities within the collaboration will initially be co-funded (50%/50%), with either company having certain rights to reduce its funding share for any collaboration programme.

So it seems they not only lost out on 5 years of developing their B2B business, but committed to covering a portion of the R&D costs over that period as well. There were terms about profit sharing on new developments, so it was a bet.

It doesn't sound like it worked out quite as well as either sided hoped though because in October 2023 (after the 5 year agreement) they entered into another agreement but this time [1]:

Under an amendment to their Collaboration Agreement, 23andMe will receive a $20 million upfront payment for a one year, non-exclusive data license. > [...] > for a 12-month period, and [23andMe will] offer its research services for analyses of the data over that same period. Any new drug discovery programs that GSK chooses to initiate during the agreement will be owned and advanced solely by GSK.

[0]: https://www.gsk.com/en-gb/media/press-releases/gsk-and-23and...

[1]: https://investors.23andme.com/news-releases/news-release-det...

A company that has never made any money is now worth nothing. Maybe the world is starting to make sense again?

Trust me, it's not. I've seen start-ups worth 100x than a smaller successful business due to speculation, despite the smaller business employing more people and actually turning profit for many years.

There’s plenty of successful businesses chugging along growing at about the rate of inflation. It’s really hard to grow a business at 10 or 500 times that rate.

Why would it be surprising to value the latter kind of business higher than the former?

What use is that growth in terms of valuation if the company never manages to break even?

VC logic is that 5% of the companies they invest in returns 100x their investment in those. So even if 95% of the companies never manages to break even they are still profitable.

VC logic is that a company does not need to be profitable for a VC’s investment to be profitable. Simply getting the company to an expensive IPO is all that is required for VCs to make money. And that is possible even if the company has never made a dime.

This is the case for all investment, not just VC. Even cash, gold, real estate etc works on the same principle. It is valuable because other people find it valuable, not because the thing will give investor the profit in itself, just the valuation are expected to grow.

Growing at the rate of inflation only matters if your market is capped out. Like, say Soda makers.

If you either create a brand new market, or are taking on a drastically undeserved market... you absolutely need to be growing faster than inflation. Or your brand new company would be worth $1 the first year, $1.03 the second year..

Yeah I was trying to convey there are successful businesses that are broadly maintaining and there are rocketships (and everything in between) and we should expect them to be valued differently and have different risk profiles. So the observation (100x! That’s dumb!) is not rational.

There’s plenty of successful businesses chugging along growing at about the rate of inflation.

Even outpacing inflation by 1.2 - 2 times. It's not insane growth, but it is consistent. Better yet is that they tend to have a decent number of assets too.

It’s really hard to grow a business at 10 or 500 times that rate.

How often is 10 to 500 times growth seen in reality? I think most start-ups fail before the second year.

Why would it be surprising to value the latter kind of business higher than the former?

Highly stable and proven growth as opposed to highly unstable and unreliable growth.

Remember that startup "valuations" are not what they're "worth" - it's simply how small of a segment they have been able to convince the last round to take. The valuations have a bunch of unknowns that can wildly swing it.

The small business is successful and so the calculus as to what it is worth is much more explicit.

The extreme example of this is commercial real estate with a long-term tenant (think: the person who owns the land a post office is sitting on). Everything is known (lease length, amounts, current interest rates, etc, etc) that the value/sale price is a simple formula.

As an added security measure, we have temporarily disabled the ability to download your raw genetic data. We hope to re-enable this ability soon, and we appreciate your patience.

After reading this article I decided to download my data in case they go under. Was greeted with this message on the relevant page. Does anybody have some insight if this is related to the data breach or something else?

I believe under HIPAA, you have the right to access any of your medical data. If you really want your data, I would get a lawyer to write a nasty letter to them demanding it.

As usual when HIPAA is brought up, you're wrong. HIPAA is the most misunderstood law in America.

Hint, the "I" in HIPAA stands for "insurance." A general rule - if an insurance company isn't involved HIPAA doesn't apply. HIPAA is a law that regulates insurance companies and entities that deal directly with insurance companies, not "medical data."

HIPAA doesn't apply to 23andMe. At all. HIPAA only applies to "covered entities" - https://www.hhs.gov/hipaa/for-professionals/covered-entities...

A general rule - if an insurance company isn't involved HIPAA doesn't apply.

Not exactly. If you go to most any healthcare provider, and pay out-of-pocket, HIPAA still applies. More accurately, HIPAA applies to any healthcare providers who transmits any health information in electronic form in connection with a transaction covered by 45 C.F.R. §160.103. Or in other words, basically every healthcare provider is also a covered entity, unless they're completely 100% cash only and don't take insurance for anyone ever. Do these even exist?

Although, still 23andMe wouldn't be covered because they're not providing healthcare services.

basically every healthcare provider is also a covered entity, unless they're completely 100% cash only and don't take insurance for anyone ever.

This is correct - I should have been more specific. If a business doesn't take insurance then HIPAA doesn't apply. Not that insurance isn't involved in a specific transaction. I've edited my GP comment to be more specific.

Do these even exist?

Yes, absolutely.

https://www.healthline.com/health-news/these-doctors-accept-...

https://www.nytimes.com/2012/11/24/your-money/dealing-with-d...

https://www.fawkeshealth.com/insights/are-cash-only-clinics-...

So-called "pill mills" are almost always cash-only when they operate.

There's also health centers on university campuses that are funded through student fees and don't bill insurance.

So far, genetic testing firms haven't been considered to be covered by HIPAA:

https://lawforbusiness.usc.edu/direct-to-consumer-generic-te...

They've been doing that for months. Scummy behavior tbh. It happened right after the hack, but there's also a new crop of competitors that let you upload your raw 23andMe data, so there's speculation that it's trying to stop the outflow.

If you email them about it, you just basically get a copy-pasta reply restating the message on the site, and if you keep emailing them 3+ times asking for a refund (ask me how I know), they'll tell you you can manually upload identity verification and they'll get back to you in 6-8 weeks with the data.

Thanks for letting me know, I'll try that.

My guess is also that they use the hack as an excuse to keep people in.

What would be the rough cost of equipment and consumables required to do DNA sequencing for say 10 people? Assuming similar genome coverage as 23andme gets.

Last time I researched it the estimate was 5-6 digits, but I'm sure technology advancements have made it cheaper. What happened to that $1000 nanopore?

I have some acquaintances with lab experience who could run this, and could split the costs between friends and family. Everyone gets their own data, no copies are made, all samples are destroyed. We can resell the equipment after to recover some of the costs.

This is the best way to be sure about the data not leaking or getting sold to boost CEO bonus.

BGI (formerly Beijing Genomics) would be the one for you. https://www.bgi.com/us/sequencing-services/dna-sequencing/wh...

That seems like a service you send samples to.

I want to buy a machine, observe the whole process myself and then destroy/scrub the machine.

If you really want to do this I would just do it like we do it in academic labs. Prep the DNA yourself and send to Illumina who will do the sequencing and send you the raw data.

BGI does not sell the machines they reverse-engineered from Illumina. You can sometimes find old Illumina machines on ebay, or buy a new NovaSeq for a about a million.

The Nanopore Minion is still a thing, but it's sequencing and has higher error rates than competing short-read methods like Illumina's sequence by synthesis.

https://nanoporetech.com/products/sequence/minion

Sequencing DNA with nanopores: Troubles and biases https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8486125/

Based on what I'm seeing from 23andMe's website they only do genotyping, not sequencing.

https://customercare.23andme.com/hc/en-us/articles/227968028...

"23andMe uses genotyping, not sequencing, to analyze your DNA. Sequencing technology has not yet progressed to the point where it is feasible to sequence an entire person’s genome quickly and cheaply enough to keep costs down for consumers. It took the Human Genome Project, a consortium of multiple research labs, over 10 years to sequence the whole genomes of just a few individuals."

Edit: https://www.23andme.com/total-health

I guess they started providing whole exome sequencing, but I can't find information about what depth they're doing it at.

Sure I don't need a full sequence, just the bits used for health features on 23andme.

Of course the closer to a full sequence the better as any future research could be used by just reading existing data. But realistically just having data on few hundred most useful markers is enough.

Ah, 23andMe, the Experian of DNA.

Look, I give her great credit for the women in STEM thing, her perseverance in the light of obstacles, and making a 10$ lab kit worth $399 to buyers. But to not understand how far actors would go to get hold of that data, to not understand that the drug industry is brutal because humans are poorly-understood meatsacks (see: anything by Derek Lowe), well, seems like that Yale education didnt impart a whole heap of reflective thinking skills.

10$ lab kit worth $399

Can you elaborate? Does this mean they've added $389 in value, or they swindled people of $389?

If it's the former, what did they do to create that value? (Not being snarky, I don't know enough about their business and am legitimately curious. There seems to be a lot of comments here about unfulfilled promises.)

The former. That is, they convinced people to pay a premium over the material cost of the test. Nothing skeevy about that, just good marketing. Assuming that customers were not misled.

"It's not a pencil, it's the thing that writes the next Moby Dick" - that sort of thing.

That sounds more like the latter.

You have to define "value".

Personally, I roll my eyes any time someone questions "value". If a customer is willing to pay $399, then obviously they put the value of whatever the results may be from it at at least $399.

“Utility” is the value I was looking at. I.e., they’ve added something (tests, insight, even just ease of use) that wasn’t available with the $10 version.

I was under the impression more that it was a $10 kit for a $399 test sold for $99 to users, at the expense of the investors in hopes that the data is able to be monetized somehow for more than $400 per user.

I had not heard they went IPO. They are a penny stock now?

Looking at those financials... yikes. I am kind of shocked how poorly they are doing.

What happens when the company goes down? they will still have the DNA databases

Correction: the highest bidder will have the DNA databases.

Qatari government is always happy to help.

How about the "Russian-born billionnaire" neighbour? Seems like he put in a pretty penny as well.

there's no guarantee they will go under. They have low debt and while unprofitable and a relatively reducing number of potential customers.

Their huge problem is hackers. All the latest news is how hackers have grabbed up those databases.

What's likely to happen, they'll self restructure, get to profitability, start a stock buyback program. But IF and WHEN?

No company that had to go public via SPAC is going to bother with all that. The whole point is to pump and dump. This company will be folded into some drug company for its "IP".

This story makes 23andme sound like a non-fraud version of Theranos, with some of the same issues around business viability, dodging the FDA, relentless PR and funding from rich friends.

If a healthcare startup get shout-outs from Oprah, SNL and branded Barbie dolls, is that a bad sign?

If Theranos devices had been able to do what they claimed the business model was clear and likely very profitable.

I don’t understand how anyone ever thought 23andMe had a viable business model selling a test that only needed to be done once(and apparently selling it at a loss to boot)

The "if" was the entire scam though. They hired many smart people, and every one of them said that the proposed design was physically impossible to build.

There's a reason that these complex undertakings are made by boring conglomerate companies that have decades of experience in the industry, produce many different products in that sector, and whose CEOS don't try to get on the covers of magazines.

Precisely. Yes, breakthroughs get made by smaller companies and "outsiders" every so often, but the thing is, to these testing companies - there's billions in profit and improved logistics by figuring out "nano" collection. It wasn't that they weren't interested. They've tried, for decades. But in the end, biology and physics are winning out.

Forbes listing is a big red signal

To create a recurring revenue stream from the tests, Wojcicki has pivoted to subscriptions.

Just in case, you know, your DNA changes /s

I attended Ann's talk at Google when she was still with Sergey. They had spit kits in case anyone wanted to do it on the spot (I didn't).

When President Clinton announced the completion of the human genome project, he looked forward to all the wonderful drugs that would follow therefrom. Then I took a number of extension classes in molecular biology and drug discovery, and learned from the people who actually do it that DNA information is often helpful, but it's not a silver bullet.

Sequoia, which invested $145 million in 23andMe, still holds all its shares, he said. Today they are worth $18 million.

.. and this is why those VCs get the big bucks /s

Just in case, you know, your DNA changes /s

It absolutely does. That's how cancer occurs btw. The term is "somatic mutations".

I'll confess my ignorance here, but would your saliva cells also show it (assuming it's not a mouth or throat cancer)? And it is is, wouldn't you have noticed something before your regular "checkup" from 23andme?

Good question. I think this should answer your questions

https://bmcmedgenomics.biomedcentral.com/articles/10.1186/s1...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4009603/

Speaking of detecting cancer indirectly, it is actually the fact that sometimes you can detect tumors (early) because their DNA or RNA products reach the blood or other bodily fluids (cfDNA/cfRNA for "circulating free"). It is a big and a recent thing - for many cancer types e.g. lung there was basically no easy way to test. Biopsies are very invasive obviously....

23andme wasn't offering blood testing every year, though, right? Nor claiming to detect new mutations in subsequent saliva tests, AFAIK.

Silicon Valley's time is coming soon, it is going to go the same way as Hard Rock/Heavy Metal music scene on the Sunset Strip, LA in the 90s.

I give it 10 years time before it turns into a town just living on its old glory, with tourist attractions like:

- "This used to be a bar where Google's exec team drank"

- "This was the hotel Mark Zuckerberg threw an Oculus Rift into the pool"

- "Oracle datacentre re-enactment theme park, with real old beard Oracle DBA you can interact with"

Reference: https://youtu.be/AUrHVWa3s2Y

Unless dollar looses it's reserved currency status Silicon valley is going to be fine

Silicon valley's tokenomics are going bust because of the Fed's tightening. Loosing the reserve currency status is another matter altogether which should scare the future of the American economy.

That wouldn't matter. "Exorbitant privilege" is a thing but it's not that much of a thing. Notice Argentina, which has the opposite of our privilege, still gets loans - there's no other set of countries for lenders to go to.

The reason it looks like we have magic fiscal policy and Europe doesn't is that Europe just loves austerity and refuses to print money basically because they're stubborn. They could and should do it too.

Not encrypting user data and then being hacked resulting in compromised user DNA details certainly isn't a positive for PR. Can someone tell me why more companies don't encrypt data at rest and if that would have prevented the leak?

The hack was logging in with reused user credentials, then scraping the ancestry data. Encryption would not have helped in this case.

Because actually encrypting at rest usually offers a ton of hassle for little actual additional security.

For example, if done right, you need to decrypt with some form of passcode/system on boot, etc, etc. But once "unlocked" the system has access to the data, and usually the hackers come in via the "live" system.

Things like backups are usually encrypted but not always, but the number of incidents of people stealing physical media is pretty low compared to ransomware/remote hacks.

Encrypting data at rest in a data center doesn't provide as much protection as you might think. The level of system access in order to access the raw data files is usually about the same as accessing the higher level database system itself. So at best you're adding a couple of extra steps to the attack.

Since there are usually significant costs to encrypting production databases, such as CPU utilization, many organizations choose to focus on other security controls. Data encryption is just one of many security controls at play in a scenario such as this and the security team has to carefully pick their battles to avoid just being completely ignored as the "say no to everything" guys.

Oddly, 23andme adopted an extremely cautious, risk-averse strategy with respect to providing "health information". The result of this is that many other services became a more interesting/entertaining source of personalized health information based on genetic data (often 23andme raw data extracted and fed into the other system).

I get new updated health information from 23andme perhaps 2 times per year. It's mind boggling to imagine that with all the research being done that is all that makes the cut as interesting and trsutworthy enough for 23andme to tell me about it.

In other words, a majorly failed content strategy based on fear of being shut down for providing insufficiently vetted health info.

Meanwhile, someone created multiple accounts and the ancestry results didn't match even when collected from the same person.

I’m confused… you want more health recommendations from a service whose most basic scientific offering you also consider junk?

I have some pills for you. Just for you, mind you. Special made. Sign up for this subscription and we’ll send you a new supply each day…

No, but I would prefer greater transparency about the accuracy of the analysis and also greater transparency about the reliability (or unreliability) of any health recommendations based on research.

I'm not looking for a single source of authority and I will not be disappointed if an updated "chip" or study reverses a previous recommendation/insight.

23andme had a blog post about the MTHFR gene and why they don't include it. I'm not there to read the blog I want to know interesting things about my own genetics, even if what is interesting is that they don't think it matters! This is just bad content strategy even if it's justifiable from a "healthcare" perspective.

Why so much worry about a customer getting the wrong impression from one of the health reports? Seems a bit absurd. How much money did it cost to put in place all the warnings about the potentially upsetting impact of various mutations.

I wish that 23andme had focused on being an entertaining way for people to discover more interesting stuff about themselves, rather than a rarefied place where only the most well-vetted research is acknowledged to exist.

The FDA provided ample threats regarding their health claims. No wonder this is how it ended up.

The amount of success she had because of being connected to Brin is absolutely wild. It's literally make-or-break for her success. And her sister, CEO of YouTube?

It's a cliché what we say about connections and success, etc. and so forth. But that WSJ article really hammered how in this case how absolutely tied to connections this company, and her wealth, were, and how luck plays a role. In a business idea people are saying should have been doomed.

People are discussing all sorts of details about the company's business strategy, what they should have done with all the data, whether that data is useless, what they might do with it now, whether they should be allowed to, etc. Someone pointed out the GSK investment which was interesting.

But to me all this is trumped by the human element - how having the right neighbor, or boyfriend, or sister's boyfriend, can propel you to the top with unimaginable wealth. Something worth thinking about as we are on a forum run by a startup network: Given what we have learned here how meritorious is success in Silicon Valley really?

But she's failed. Zero success. And that failure is all over the wall street journal. The lesson is, no matter who your connections are your business will fail if it doesn't provide lots of value at a cost structure where it all adds up. Compare it to old Sergey - he was a know nobody 20 something nerd studying computer science. He co-created one of the most valuable businesses in the world.

Fair enough! The business failed. It's embarrassing, and so forth. Sure. And the employees of that business (and stock owners, which may include many of those employees) are not in a good place.

But something tells me the sisters aren't going to be starving any time soon. I don't know her assets but I suspect even with a failed business there's a few million in real estate and savings set aside, even if her big ownership in the business is in the penny stock category. A position that many of us wouldn't mind.

Sure, but the answer there is to marry a billionaire.

And, I never met Susan who ran YouTube, but I have heard she's very capable.

First of many mistakes that 23andMe took: fired the co-founder.

1 of the co-founders had access to an unlimited pool of personal capital (at least until personal issues curtailed that).

The other had an idea.

Make sure you are the co-founder with the sustainable advantage

Yeah, yeah, make sure you are born into a rich family and a right zip code.

That too....

but more of an object lesson that as the needs of the company change, the board/your co-founders will constantly re-evaluate whether you are still adding value.

Please ELI5: I understand that one of the key features of 23andMe is their health report because the genealogy and the DNA dump are included in other companies.

For a developer plus a scientist it is teally difficult to get the health data from the raw ADN and using current (Python?) modules?

Health report? They only have limited info about your DNA (common small variants).

The further you move from obvious disease-causing or high-risk mutations the more expertise you need. But even there you need where to look and how to present the results.

The real (honest) question is what such reports cover and what qre the precision/recall? Answering that requires far more than duct-taping a few python modules.

That is why I asked about having a scientist (or many of them). From your answer I understand that for every health condition, and probably jointly, you need to do an analyzer? I am trying to understand the complexity from a CS perspective. You have the string that is your DNA and then you need to pass different functions with their own complexity for detecting each health issue?

Omg, how can a company doing genetic test burn $1.4b ? Altought better question might be, how could it be worth $6b ? :-)

“celebrity spit parties”

Richard Branson, Oprah, SNL, billionnaire neighbour investor, Google founder, celebrity parties, branded Barbie dolls and SPAC IPOs can take you a long way .

Their kit is 99 dollars, but how expensive is the actual DNA testing nowadays ? It's my understanding from this [0] video that it is approximately 1000 dollars for the whole genome, but 23&Me sequence only a tiny portion of the genome (above video mentions 500 000 bases out of 6 billion total bases of human genome), and that sequencer processes thousands of samples in parallel, so there is some economy of scale factors. It is sometimes very confusing how all these tech/techish companies have such bad financials.

[0] https://youtu.be/C3T_IaIGQxo?t=141

Their financial reports consistently paint approximately 50% gross profit (revenue - cost of revenue). However, their R&D burn is enormous. Sales, marketing, general and admin costs are approximately equal to their gross profits.

In an alternate reality, you probably could have structured 23andme into a company making modest net profit. But that would not have matched the 6 billion price valuation either. And it's quite likely that a substantial part of the R&D burn was because they recognized the limitations of their core product.

https://investors.23andme.com/news-releases/news-release-det...

The problem might be that those other 6 billion bases have all of the signal that you need for drug discovery and rare disease research.

Why do people believe genetic testing offers a pathway to a wide array of beneficial (non-snake oil) tailored drugs and treatments? What is the scientific basis for this belief, other than "seems plausible" reasoning?

20 years ago it was pretty plausible. Most of the genetic effects that we knew about were large. Maybe all of them were large?

Now we know that most effects are small, and there aren’t useful interventions that can treat the effects.

That is my feeling also. And well, no useful drug interventions at least. For most genetic risk factors, lifestyle factors dominate the total risk.

I was an early adopter of 23andMe way back when they started. Before the privacy concerns. Before we had to worry about password uniqueness.

I didn’t renew my services with them. 1) I didn’t gain any value out of it, 2) their consistent blame of users that used recycled password for their breach.

I use ancestry.com as I’m working on dual citizenship with my family’s home country and find it worth the value. I was able to trace my family back through the Colonial Revolution all the way to the 1500s in Germany. That’s worth my money. Not 23andMe.

Before the privacy concerns? Privacy concerns are baked into the product, no?

Only total morons pay to let a company sell their genes. Happy downvoting, I know this will offend a bunch of people in this crowd.

In a sane world this thing should have never work in the first place but given the world is full of morons who are dumb enough to actually pay for shit like that its quite an accomplishment to run a company like that into the ground.

I read articles of people sending in banana DNA 23AndMe or a similar service and they got a supposedly ancestry tracking back. These services are dubious at best and you literally sign your DNA away to be sold to the highest bidder in their terms. I would not do this FOR FREE, let alone pay a ridiculous $130 for it.

I understand your take, and in many ways regret sending my data to them, but through this service I did find 6+ siblings I was not aware of, as well as my father. So it does provide some benefits.

Apparently $356M is nearly $0 to the WSJ

Apparently $356M is nearly $0 to the WSJ

That is a pretty awful click-bait title. Presumably the "$0" is in reference to their sub $1 share price?

The fact that they put everything behind a paywall _and_ slap on click-bait titles is confusing to me. I can't imagine paying for access to that type of writing.

How could a company, that provided me the amazing insight that I have 71% likelihood of having little or no back hair, fail?

BTW, I have quite a lot of back hair. Most of the other physical features are wrong.

I got the same result, which came across as stupid given that I have lots of back hair.

The last 5-8 years in tech were like the steroid era in baseball. We thought all these people were geniuses but virtually none of them can make their business models work without free money and investors looking the other way on profitability. 23 and Me being worth billions is like Brady Anderson hitting 50 home runs.

Honestly it’s good from that aspect. CRUD apps bring worth billions just does the make sense.

I found my biological father and a half-sister thanks to 23andMe. It's hard for me to fully express how much that has meant to me. While I am fully aware of the bad side of DNA testing that many have raised here, I just want to also point out that there is also good that can come from these tests.

Sounds like its time to export your data and delete your account before they get sold to someone who will do who knows what with it.

23andMe had a data breach this fall that exposed nongenetic information of 6.9 million customers

Why does it specify "nongenetic"? Is it because the passwords were exposed? Doesn't that mean that any information accessible with those passwords can also be considered breached?

I mean this is the Silicon Valley playbook. Get raised by some ultra connected family. Start a company, get money from your family then get pictures on Inc mag as some self made genius founder.

Did they kept the kits sent in? Thus still sitting on many DNA samples. The storage costs money but the data is probably worth it. Not sure who to ask?

I never got that company, to me it seemed foolish from start.

Their therapeutic area focus was far too broad. Going after "dozens of diseases" in parallel was a recipe for disaster. It takes a very specific understanding of your disease to translate genetic insight into a mechanistic, testable hypothesis.

This is a classic combination of cargo-cult matching with ZIRP regime.

23andMe never had a business plan, but it didn't matter because their investors figured they had the connections to make it work (look at the explanation of how they booted out the other founder). Their Libertarian/lazy attitude towards regulation is just an example of how couldn't be bothered to even do the necessary homework. Their attitude towards their data breach is another.

Makes me wonder how good their science is. I don't know anyone on that side of their business, but comments from friends who used to work their about how their parts worked are not encouraging.

It is good OpSec to scramble your DNA every six months, says no one ever.

Tribe follows tribe and nation follows nation

I was an early adopter of 23andMe. I bought many as presents and recommended it to many, many people. I even bought some stock after the SPAC (not the best investment :)).

I have no regrets, and still rooting for them.

There is something magical that I could spit in a tube, and my cousin could spit in a tube, and then weeks later we got emails saying "Out of millions of users we found your cousin just from spit!"

As kids we are lied to about a lot (the big guy in a red suit, for example), so part of growing up is verifying that what you are taught is actually true. If you did not major in biology, you don't have an easy way to verify that what you are told about genetics, DNA, and evolution is true. 23andMe provided that easy test for the layperson. I think that alone is worth the hundred bucks.

The joy I got from verifying DNA is at the core of life is like the joy I got from Intro to Electrical Engineering, building my first circuit with logic gates, and realizing that indeed everything is built up of 1s and 0s.

It seems they haven't developed more of a business beyond that novelty. I think I was expecting they would come out with future innovative offerings, given that their first was cool and done pretty well.

I was never crazy about the drug development plan. Seems like a more logical first step would be to combine with a fitness wearable company (Goog/Fitbit, Apple, Oura Ring, Whoop, Garmin, Samsung, etc), that there might be valuable insights from those datasets merged.

https://archive.is/1yzWi

23andMe seems like an archaic thing to me, the sort of thing that a science fiction author come up with, a world of high tech obsessed with ancestry.

So what happens to my DNA data if they go bankrupt and start auctioning "assets"?

Helps when your ex is Sergey Brin. When "founding" the company they were married, I wonder how they got financed

It is an embarrassment that they bought Lemonaid health, I don’t know any other way to put it.

(1) Is that being associated with a penis pill pusher is brand destruction. Any normal person would get this right away without trying but executives just can’t see what their actions look like to their customers.

(2) It’s a form of achievement laundering. Lemonaid health failed, pure and simple. A circle jerk acquisition is alchemy that turns a failed business into an apparent success, now the founders, management and people who invested in it will get accolades for being successful when really the Silicon Valley Mafia stole from public investors to maintain its image.

It ought to be a lot harder for businesses to get acquired. Maybe we need a vote by the customers, maybe when Google buys a company they should be required to spend a 1/4 of the money on ads warning people that the business could get shut down, etc.

It is interesting to me how their stated goals and planned future trajectory sounds like what happend to 'deCODE genetics' an Icelandic genetics company founded back in 1996 with a focus of "developing novel methods to identity, treat and prevent diseases"[0].

They really were on the forefront at that time, and have been an research powerhouse ever since[1] , but struggled for some time to find a sustainable revenue stream for their discoveries. Shortly after the turn of the millenium they came out with DNA diagnostic kits, that were able to diagnose various things known or thought to increase likelihood of various illnesses and conditions. And this product even came onto the market before 23andme.

But since 2012 (I think) they have been an independent research subsidiary of the US pharmaceutical company Amgen, where Amgen then can capitalize on the research output to make the drugs in question (and probably much more that we are not privy to).

[0]: https://en.wikipedia.org/wiki/DeCODE_genetics

[1]: https://www.decode.com/publications/

edit: wording and spelling

I'm no economist, but isn't that to be expected?

- A burst of people take your DNA test

- Much less people will subsequently, as your target becomes younger people who are now old enough to pay for DNA tests.

Seems like you'd have to whether being way under-capacity for the initial burst, and then essentially a return to normal.

Wikipedia entry has:

“In 2007, Cusenza left to join Nodal Exchange as CEO the following year. Avey left in 2009 and co-founded Curious, Inc. in 2011.”

Cusenza is not mentioned in the article (he was president, too) and evidently Avey didn’t just “leave”.

Request deletion of your data here: https://customercare.23andme.com/hc/en-us/articles/212170688...

Non-paywall link: https://archive.is/yqxZa

Alternative non-paywall link:

https://cc.bingj.com/cache.aspx?d=1180808593353&w=TdklVuJENI...

(archive.is will not work in some parts of the world)