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Comment by ilamont | Hacker News Reader

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).

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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.

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.

> 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

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)

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.

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.

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.

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

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.

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.

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.

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.

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.

> 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.

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

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.

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

Yes you're correct, Private Equity.

thanks

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.

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

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.

> 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?

Wrong person

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

I believe she was married to Brin.

Married to Sergey*.

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