Independent directors of 23andMe resign from board
(investors.23andme.com)625 points by LarsDu88 3 days ago
625 points by LarsDu88 3 days ago
Closest competitor does a lot of heavy lifting in this situation. Ancestry is the overwhelming leader in the find long lost relative space/your "roots" space. Look at https://www.ancestry.com/ and https://www.23andme.com/ 23andme has basically given up on this part of the business.
Their pitch is health. But that pitch is murky with no good hook to keep you hooked for a monthly subscription. So after they get the initial $99 from the customer, most of the value customer is going to get is already served up in the first report. Maybe their big database will turn into making cancer drugs but maybe it wont.
> 23andme has basically given up on this part of the business.
The routine emails I get about them allegedly finding new DNA relatives suggest otherwise. The DNA relatives feature is also still pretty prominent in their UI (at least on desktop browsers; haven't looked at the app yet).
That said, it certainly doesn't offer much beyond "these are your relatives; send 'em some messages or something lol". Ancestry probably has a lot more features on that front, which is unsurprising since that's the sort of thing Ancestry was doing long before they even offered DNA sequencing kits like 23andMe does. I don't know if I'd characterize that as 23andMe "giving up", though; more that it's good enough for a product that never intended to enter the genealogy software market in the first place.
The new-DNA-relatives feature is one of the few "growth" things they can continue to bother you with, outside of newly-discovered genome-based indicators for diseases.
I get/got spammed by them about new relatives on the order of "6th cousin who shares 0.3% of your DNA." Thanks, but who cares...
I wonder, do the "relatives" know and agree that their information is sent to other person?
> leader in the find long lost relative space/your "roots" space.
Acknowledging Ancestry.com are well ahead of the market here, but I never got their appeal of finding some long-lost second cousins... basically strangers, and saying, "hey, isn't it fascinating that we share some arbitrary level of common genetic makeup". If some randomer reached out via email to me doing this big reveal I'd be "thanks, but into the spam folder with you".
It's not really the selling point. The selling point is the interest in the genealogy, and the "finding the long-lost second cousins" is a feature that helps you address the genealogy.
Concrete example: My grandmother was born in Brooklyn. As it turns out, her half-brother lived a few blocks away. At the time my grandmother was born, he was 9 and living with his grandparents despite the fact his father lived nearby.
I still don't know why, but when I found out he even existed - something I didn't know until long after my grandmother died -, I also soon found his daughter was alive and well in New Jersey, and was able to get in touch. I now have pictures, and stories to fill in not just his background, but thanks to that connection I now have pictures of the graves of my great-great-grandfather, and several of his children, and stories about my grandmothers uncles, and aunts she never mentioned while she was alive.
I also have pictures of my great-grandfather - my mums grandfather - that I hadn't seen before.
Of course, that is reasonably close, but sometimes those things end up passed down one side of a family, with no copies existing, and you can increasingly find relatives far away from you in the tree who has photos of shared ancestors, and that proportion will increase dramatically with each new generation.
So every time I find a match, however remote, with an active account, you better believe I'll message them. Not because I care that we're related, but because I care about whether or not they can fill in some bit or other in my ancestry. For me, anyway, it's a fun puzzle more than anything else, when you go beyond the immediate family.
Like why is that one ancestor showing up as a widow one moment, and someone with the same name as her husband showing up as married to her sister in the next census with an implausible country of origin? Can I find evidence to corroborate theories? Can I find that notorious "hat maker from Bremen" that almost certainly didn't exist but was cover for infidelity, or evidence that he didn't exist (I almost certainly can't) - it'd be funny, because an entire arm of the family took on the supposed, probably invented, last name of the hypothetical hat maker because an ancestor of theirs thought it sounded posh.
The "long-lost second cousins" are just bit players in that game.
I don’t think anyone is actually trying to connect with distant cousins for social interaction; rather the shared DNA segments provide hard evidence to confirm distant ancestors. I got into genealogy a couple years ago after thumbing through some old family documents and I’ve been able to confirm 6th cousins (traced via our shared ancestors) using 23andMe data.
Now there are probably some who think genealogy is a silly pastime and maybe it is, but researching my family history helps me feel grounded and more connected to humanity so I derive a lot of benefit from it.
I mean, computer games are a "silly pastime" too. Whether or not one feels grounded, it can also just simply be fun, and that fine. I've even enjoyed helping strangers solve genealogy problems because piecing together the evidence and ruling out options is just another type of puzzle and one that is often very challenging.
For "close" relatives, I agree there can also be more to it.
E.g. my mums mum never told us that much about her family (we never asked while she was around), and my mum didn't know either, and so uncovering more about that was very fascinating (it helped that there was plenty of drama to uncover) and helped fill in a lot of gaps.
That’s a very glib HN take.
Interest in family trees predates Ancestry.com and will certainly outlast it. It’s not necessarily about contact. I’m not sure what’s controversial here.
If you are from the United States its interesting to trace back your ancestry and last name to a specific person/persons from another country.
There are tons of websites for different last names in the United States, showing history of the name. Many times the last name be traced back to a singular person, which I find especially cool since you have sprawling families all connected by one guy who made the journey over. Obviously last names like Smith won't be like this, but if you have a unique last name it can actually be quite common that one person coming to the new world connects you and everybody else in the Americas together. I find that super cool to think about and I am glad people are doing the effort to research and find this info out.
The rise of services like 23andMe and AncestryDNA have actually allowed people to discover information about their parentage that they would otherwise not have had access to, basically they find out that one or both of their parents are not biologically related to them. Individual situations range from extramarital affairs, closed adoption, in-familiy adoption (teen gets pregnant, her parents raise the child as a sibling), and those who’s parents chose to conceive with donor gametes. In many of these cases where it is a surprise, the parents have either actively chosen to withhold the information or didn’t know.
In cases where the user is trying to find their parent, it’s statistically unlikely that their parent would have taken the test, but 2nd cousin matches are very common. These seem like a huge distance away, but you can work backwards and build a family tree up to their great grandparents and fan out from there.
I not only found a genetic disorder that my mother and I shared (Partial PNP Deficiency) but I also found an woman who was the illegitimate daughter of my Uncle (who had passed away) and she was fianlly able to see pictures of him and know more about him.
There is so much more power in 23andMe's Raw Data regarding health than people realize and I am capitalizing on it. (Less with the v5 chip but it is still really good,)
Finding drugs with 23andMe is a waste of time and is not wehre they should be focusing on making money. They should be focusing on personalized medicine.
I also have a rare genetic disorder (alpha-1 antitrypsin disorder) and discovered it using 23andMe. I am in the process of working with a pulmonologist to manage the disease, and if they had not screened me for it, I would have written off my symptoms as “just bad asthma.” Currently there is no health product that 23andMe sells that is appealing to me, but if there were, I would gladly pay. I hope they can stick it out because their DNA screening is a valuable service.
Others have shared some more heartwarming tales of using these services but I saw a story that in Australia a project is helping the children of sex tourists to look up their fathers via these services to get child support payments:
https://www.abc.net.au/listen/programs/am/dna-helps-children...
One of my parents was adopted creating a much higher incentive and an increased likelihood of finding nearer relatives.
She would not pursue out of respect to her adopted mother. Outside of this I would be in the same boat as you.
I used ancestry.com to help locate a "long lost sibling" of my in laws. They were able to partly rekindle a relationship after decades apart.
Not everyone is interested in genealogy, that's up to them, but to those of us who are, finding an unknown nth cousin may be worth a lot to untangle the lives of our ancestors, write the stories of our families, and find out where we come from, in a far wider sense than merely the genetic one.
But Ancestry is a roach motel. Of all sites that sell user-contributed data back to their users, and they're all scummy, I don't know any which are more scummy than Ancestry and MyHeritage.
I've found it extremely interesting. It's brought me greater insight into my grandfather I knew nothing about, and even the (very few) family traditions/recipes that have come down to me. It's made the world feel smaller and more connected, seeing actual relatives in all of these far off places, in the kind of way I always HOPED the internet would bring interconnectedness.
I think it's inherently human to want to understand who we are and where come from. Especially for someone like me in the USA. How did my people end up here?
I think a more common use case might be finding siblings if your adopted, or trying to reengage with your roots if you were say a member of an indian tribe or native hawaiian.
I have a family member who is retired and has taken up geneology as a hobby, she has connected our family history really far back. Not my cup of tea personally but I can see the appeal, its like a treasure hunt. She has traveled to go to old libraries and dig up newspaper archives.
Americans treat their ancestry (specifically the nations they come from) almost like zodiac signs. This is meme material (e.g. Plastic Paddies, Plywood Poles etc.)
Zodiac signs is a good way of putting it.
I think as a country of immigrants—or colonizers—we all feel desperate for some sense of personal history and identity.
It’s also helping children figure out who their bio dad is since most aren’t involved in their kids lives these days.
I’m on mobile and too lazy to check, but is ancestry.com related in any way to Jehovah’a Witnesses? I’m asking because at some point I was online searching for any info about the Russian Imperial census held at the end the 1890s and, to my surprise, the JW website had all the info in there (or at least almost all the info on the region I was interested in, Kherson). And then I found out that this sort of stuff is right down JW’s alley for some religion-related reason, good for them.
> at some point I was online searching for any info about the Russian Imperial census held at the end the 1890s
Any idea where I might find a list of Russian navy officers from then or the following decades?
Ancestry does more than genetic analysis. Their claim to fame is their tools to search through old public records to help one build their genealogy/family tree.
They should do a social media AI play where they just friend everyone for you.
To complete the data, the company is trading at $0.34/share, so while $0.40 is a bit lower than the typical 20% premium (~$0.41), I'm not sure it counts as "lowball". It's a typical premium over market cap.
Is there any reason to think the company is worth $4.7B or whatever ($9.30/share)? If so the stock is a steal at its current price and we should all buy lots. But can the market be THAT wrong?
My take on their comment was that it should be worth many billions if it was being run effectively but that it's not.
That doesn't mean the market is wrong, it means the market thinks it will continue to be run ineffectively.
If someone wants to delist and have equity/executive control -- there is little minority shareholders can do to prevent it in practice
The controlling interest can just hire incompetent ops heads and side-line competent ones for a few quarters ... slowwalk any events that could increase value
The board resigning likely helps the plan
Fair chance future offers will get worse the longer it goes on
if that is the case, isnt paying stockholders 20% over value a pretty good deal, and not a ripoff?
It seems like there are contradictory facts being claimed: that the price to go private is a lowball, and that the current price is accurate.
The resignation implication is that the CEO is running the company to the ground.
The comment further implies this is on purpose in order to buy the company cheaply.
Since CEOs typically own a lot of stock and are compensated for performance, doesn’t that seem like a strange theory? Intentionally destroying a company you run and own shares in so you can buy more shares seems like a really complicated and high risk strategy compared to just running it well, making a fortune, and getting an even bigger CEO gig.
Yes. The market can be THAT wrong, not just wrong but also corrupt and broken (on purpose).
Hint: regulatory crisis, Suzanne Trimbath, failure to deliver shares, naked shorting, Tesla shortsqueeze, VW shortsqueeze, UBS's and Swiss gov's 50 year secret, etc.
You’re kinda all over the place with your “hints”. Naked shorting and failure to deliver shares have zero relationship to setting a bid price people are willing to buy at.
Shortsqueezes are cases of driving prices up because shares are hard to get and shorts need to cover. Again, not related to the best offer being too low.
Secrets are also dumb examples because that’s hidden information.
What we’re talking about here is the valuation with all of the public information available now. Nobody of any relevant market size seems to agree that it should be $9/share.
You actually think people are familiar with most, if any, of your hints? You mention Susanne Trimbath like most people have any idea who she is. If you construct an argument instead of throwing out a buzzword salad of ideas, people are more likely to listen to you.
> Literally just one day after 23andMe presented positive phase 2 clinical results for two anti-cancer drugs ...
That's not entirely correct. It was two days after. ;)
• https://investors.23andme.com/news-releases/news-release-det...
There's also this, on the same day:
• https://investors.23andme.com/news-releases/news-release-det...
Was the plan all the time to go B2B (drug development) and they just used B2C (selling SNP kits) to hoard samples?
Even considering all FDA limitations, I cannot understand how bad their genetic risk scores are.
They have talent, they have lots of customers and data. This is a position other companies, like deCODE, would have killed to be in.
I saw Ann when she gave a talk at Google (that was when she was still married to Sergey). They had spit cups we could use if we wanted our DNA sequenced. I didn't.
Their business plan was straight out of South Park:
1. Collect lots of DNA
2. ??????
3. Profit!!
>>> selling pharmceuticals online
That would explain them selling 5 million users DNA information to GSK.
Earlier this summer, the often-scrutinized at-home genetic testing company 23andMe sold genetic data from five million customers to the pharmaceutical company GlaxoSmithKline (GSK). This surprised a lot of their customers who had forgotten that they consented to this when they signed up for the service.
https://cglife.com/blog/23andme-sold-your-genetic-data-to-gs...
Anne's plan from the very beginning was to capitalize on the value of the human genome in drug development and medical testing. Frankly everything you need to know about the idea behind the company before its various pitfalls and pivots is here (2007): https://web.archive.org/web/20140312001152/http://www.wired....
(sorry, it takes a while to load but wired has killed most of their long-term links)
IMHO she and Avey were just naive about the actual science and business of using genomic information for drug discovery. Remember, around the time the company started, the human genome had only recently been sequenced and Craig Venter was trying to capitalize on that, and lots of folks figured it would quickly turn into a multi-billion dollar market.
On the other hand, the product is quite good at finding relatives (identity by descent) and to be honest I wish they'd run 23&me as just that service, without the medical angle. My father did 23&Me mainly to figure out more about his ancestry, but also it helped a number of children conceived via IVF (he had provided a sample for fertility testing many years before) identify and contact him (I can't even imagine what the experience was like; to me, it's just a bunch of half-siblings I didn't know about)
> it helped a number of children conceived via IVF (he had provided a sample for fertility testing many years before) identify and contact him
Wait, so a sample he submitted for fertility testing was used to impregnate a number of women? Without his knowledge?
> Remember, around the time the company started, the human genome had only recently been sequenced and Craig Venter was trying to capitalize on that, and lots of folks figured it would quickly turn into a multi-billion dollar market.
To be fair, a lot of the potential easy money in that market was erased two years after 23andMe was founded when Congress passed the Genetic Information Nondiscrimination Act.
It's culturally broken. They have talent but none of the talent ships products that consumers ever see.
Yes, but the CEO was trying to take those profits for herself by biding to take the company private, which the Board of Directors refused to put up with
Phase 2 is not a slam dunk. Much more work remains, and under the guidance of a CEO who has zero drug development experience and a track record of management incompetence:
- 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.
Mathematically, the chance of a drug going from phase 2 to phase 3 is roughly 30%
This can be modeled with a binomial distribution as 1-probability of both failing. That comes out to 1-(.7^2) which is 51% of at least one drug reaching phase 3.
There is literally a coin flip chance the company will reach the stage where there is another coin flip it will be worth billions (I believe ~50% of phase 3 drugs go to market), but thanks to the messaging of the CEO, right now it seems like there is a near 0% chance investors (which include former company employees) would benefit from this.
The board is making it clear that they don't think the CEO/largest shareholder is making good on their duty (as CEO) to the other shareholders.
"Good luck ......" or so.
why are these companies worth so much, if not for sneakily monetizing and selling their user's most personal data?
in some cases the value doesn't really exist. if someone owns 75% of a company from the founding, and they sell 25% for $100000 then its worth $400000 in a valuation whether the starting capital was $1000000 or $1
selling the smallest amount of share possible for the highest amount you can get can easily balloon the "paper" value of a company, but that money doesn't really exist anywhere.
it will change when things go public, but often the initial price is based on some vapourous guess like this...
The plan was always that DNA could be use for medical research, which is enormously valuable.
And given that 23andme currently has a market cap 1/20th DJT (Trump Media & Technology Group Corp) -- a firm that makes less revenue than a variety store yet has huge losses -- I wouldn't really say it's "worth so much".
I wouldn’t compare any stock to DJT. MAGA voters value signaling, institutional investors playing games, foreign governments laundering money to the campaign, primary shareholder prepping for exit.
The companies actual revenue has zero impact and never will. Treat DJT like a NFT and it makes a ton of sense.
Ask not how it can be used, but rather how it will be misused, generating various profits for owners of the data down the line. So far targeted ad business takes the cake, I'd expect DNA profiling and corresponding credit/social score, insurance premiums and recruiting score coming eventually.
I can't believe how people can be naive over and over.
"closest competitor" really doesn't mean anything here. That's like calling a failing burger joint in a random US city a "competitor of McDonalds". No they're not.
> Feels like the main thing holding this company back is the CEO
Use has also dropped, no? There's serious questions about long term revenue generation. Ancestry.com doesn't require selling your genetic code to collaborate on geneology.
Does the corporate structure support a hostile takeover? This would enable purging management and re-staffing with competent leadership.
Virtually impossible as Anne Wojcicki holds 20% of the outstanding shares and 49% of the voting power of total outstanding shares. That's essentially dictator-level power over the company. I believe the next largest shareholder is Richard Branson. Source: https://investors.23andme.com/news-releases/news-release-det...
Despite the promising drug development news, the CEO signaled last month that she was willing to let public investors get hosed, with a low ball take-private offer of $0.40/share. I believe this pissed both public investors and the board members off. I'm not sure if the positive phase 2 results were icing on the cake.
Quite honestly this company is a ripe target for acquisition by a biopharma company like GSK or Roche.
Regrettable. I suppose the alternative path is to let them go bankrupt and to get bought out of bankruptcy. That should wipe out all equity holders. If you’re a potential bidder, get your financing or cash lined up.
So sad that Blackstone bought ancestry.. newspapers.com is a really nice tool for researchers (and most things that get touched by PE end up enshittified)
Probably that's why Myheritage started oldnews.com... Although MH was also bought by PE
I suppose I should know this: who owns newspapers.com? What's the connection?
Ancestry owns newspapers.com
A lot of Ancestry.com and AncestryDNA was founded to support the Mormon belief that the LDS church can posthumously baptize ancestors of living individuals into the church under the belief that many deceased individuals were not alive to hear the gospel of Joseph Smith.
Thus the massive data collection effort for historical information like newpaper articles from this century and the last.
Why is she even the CEO? Was she placed there by Google once they bought 23andme?
She's one of the original cofounders. Google never acquired it, only invested.
When did that happen? A founder was married to Sergei Brin for 8 years but that’s it.
They haven't bought 23andme. but there is overlap, Anne was the former CEO of YouTube and wife of Sergey Brin
Anne's sister Susan, who died a month ago of lung cancer was CEO of YouTube. Susan was the person who advocated Google acquire YouTube in the first place.
Google was founded in the garage of Anne and Susan's childhood home. Anne was married to Sergei until he had an affair.
One of the board members of 23andMe is Neal Mohan who is the current CEO of YouTube.
There is absolutely no reason for these companies to collect your PII whatsoever. You should go to nearest pharmacy and buy sterile swab, swab yourself and write long random number on it and send it. Once a month company publishes one giant zip with all the monthly result where you find your file by that random number you wrote.
Your genetic data is probably most accurate / valuable PII there is. Assuming multiple relatives use the service and at least one of them leaks online identity the whole jig is up.
So the issue is not tying it to your online identity, but rather them keeping a resource which becomes more valuable as the time goes on. So why is that an issue... most obviously because of genetic predisposition. There is always a temptation to sell diseases you are predisposed to insurers (and maybe employers... ugh). After that you can imagine someone figuring that genetics affects any number of things (sugar / weight / addiction) and sell that to advertisers...
This fixes the issue with leaks. But it creates a much worse issue: anyone can now sequence anyone else's DNA with zero oversight or privacy controls.
The film Gattaca covers how this could lead to a sort of night are society pretty well, I highly recommend it.
It also makes it much much harder to use the data for clinical research.
aye. fake emails aren't hard to come across. create a fake username and ID, and then claim the sample is you or your kid.
OK, you send the company two random numbers. One an ID, and the other a unique encryption key to encrypt the results.
It's relatively easy to go from genetic data to a surname, which is a big flaw in your described release method...
> write long random number on it
Human brains when generating 'random' numbers: https://xkcd.com/221/
> Once a month company publishes one giant zip with all the monthly result where you find your file by that random number you wrote.
Given how much of our appearance is due to genetics, that's basically all the harm with none of the convenience.
>Human brains when generating 'random' numbers
Fortunately, contemporary humans have access to computers, which can generate random numbers for them free of charge.
>Given how much of our appearance is due to genetics, that's basically all the harm
I can't fathom your concept of "harm"; and neither, I think, would any prospective customer of this service.
> I can't fathom your concept of "harm"; and neither, I think, would any prospective customer of this service.
I'm fairly relaxed about my medical history, but it's really obvious to me that I'm weird in being relaxed.
Despite my relaxed attitude, it's still fairly obvious that this lists every genetic condition*, which in turn obviously going to be relevant to any health insurance provider that isn't banned from using it.
Monetary damages are one of the easiest ones to quantify, from what I hear.
* even those that have not yet had the relevant genes discovered, because statistical methods need a larger population
What? “I’m worried my genetic sequence will be leaked and abused” turns into “why not just have the company leak the genetic sequences of everyone every month” and you can’t see the harm?
At this point we practically have a single search engine that’ll take you genetic sequence aa input and return your face, you entire family tree, your current job and address and what you do in your free time.
Are you kidding? The CIA would never fund that and if such a company existed, the founder would probably end up going for a 130 MPH drive at 2 AM and getting in a crash that burned so hot nothing but ash remained.
Something I just remembered about this company: after a data breach, they tried retroactively changing ToS to shield from lawsuits
Frankly I find this lack of accountability utterly repulsive. Anything this leadership touches is poison to me
> Through a mechanism called acceptance by silence or inaction, 23andMe stipulated that customers must explicitly tell the company they disagree with the new terms within 30 days of being notified of the changes or they will be locked into the terms automatically.
> After the attack, hackers published around 1 million data points about users with Ashkenazi Jewish heritage and information about more than 300,000 users with Chinese heritage.
https://www.axios.com/2023/12/07/23andme-terms-of-service-up...
They also just settled a class-action lawsuit stemming from their data breach: https://www.bleepingcomputer.com/news/security/23andme-to-pa...
I think data-breaches could carry the death penalty for companies.
I just got a notification from some health services company that my and my toddlers data was accessed. Including medical history, diagnoses, payment details, SSN, birthday. Why was this not encrypted? Given the world today, this is negligent. The government should be able to disolve the company and give the money to the victims.
If there was a willful disregard for "common security and privacy standards", criminal charges against the executive team.
You want my personal life data? It comes with steep personal risk.
My HSA emailed me and said “woopsies, we leaked all your data”.
And…? You’re going to try and give me credit monitoring when I literally have 2 overlapping credit monitoring offers from the other companies that leaked my data?
> The government should be able to disolve the company and give the money to the victims
I feel you, but my understanding is without clear monetary impact, its hard to collect any amount of money from these companies. Even if you experience identity theft, whose to say this vs one of the other data leaks was the issue.
Yes. That's the current state of things. And we want it to not be the state of things.
> data-breaches could carry the death penalty for companies
One, corporate death penalties are nonsense. They’re a distraction from fines.
Two, what would America pay for its adversaries to enact such a policy. Automatic self destruct for the entire data sector.
I agree that a 'corporate death penalty' would be enormously open to abuse, sector rivals would be even more incentivised to industrial espionage for one thing...
But 'a distraction from fines'? Fines do nothing to help those affected by such breaches. Even class action lawsuits usually result in symbolic payouts to individual victims. Given the potential consequences of these breathes - especially in the health space, criminal prosecution for those executives responsible seem appropriate, commensurate and incentivising.
> I think data-breaches could carry the death penalty for companies.
The ironic thing is: why pay for their data now when it's out there already?
Sounds like they played themselves
Because most companies aren't going to go out to the dark web and buy breached data with bitcoin?
To those wondering why the quotes are given, I assume it's because no 23andMe system was compromised.
The data was retrieved via credential stuffing, which is trying username/email and password combinations from other data breaches.
It can be argued that 23andMe should have had stricter login requirements (e.g. require MFA, require longer passwords) and by failing to do so they were responsible for the leaked data. Or you can argue that the users didn't protect their own data since they didn't use long, secure passwords that were unique per website.
Why is this published on their Investor page, against the reigning CEO?
Thanks for the AMA.
I want to get my genetic data, but, like obviously I don't want to go through one of these services where they ingest all that data and keep it around forever. Honestly, I'd like to be the only person with access to it and I can destroy it at will.
Tough requirements, I know.
Anyways, do you know of any services that meet those reqs? Any good DIY ideas?
Again, thanks for the AMA
I didn't follow competitors too closely, but Color may be what you're looking for. I don't know if they sell direct to consumer though.
If you use 23andMe, and request data deletion, they will do a best effort to delete the data. It's part of their GDPR requirement. When I was there, I worked on this project and they put a lot of effort into it. A big chunk of engineering org focused GDPR compliance for a month or two. They definitely don't intentionally keep data around if you request deletion.
The one caveat is that data deletion is hard, and its possible that some gets accidentally retained. I left the company over 5 years ago, so I don't know how good their deletion process is now.
One final note: to keep costs low, 23andMe doesn't look at your whole genome. They only look at a handful of "SNPs" in your genome that are known to be significant. If you've heard how we share 99.5% of our DNA with chimpanzees, this is what they're basing this on. They look at the <0.5% of DNA that commonly varies between humans.
The reason I mention this is that, if you're very interested in your DNA sequencing, you may want to opt for a higher cost service that does full genome analysis. I don't know any names but I believe there are some DNA services that do this.
I requested deletion of all my data to 23andme, but they said they keep “Genetic Information”. Does that mean 23andme still has my “SNPs”? (I’m based in Europe)
Message I received by email:
> 23andMe and the contracted genotyping laboratory will retain your Genetic Information, date of birth, and sex as required for compliance with legal obligations, pursuant to the federal Clinical Laboratory Improvement Amendments of 1988 and California laboratory regulations.
> 23andMe will retain limited information related to your deletion request, such as your email address and Account Deletion Request Identifier, as necessary to fulfill your request, for the establishment, exercise or defense of legal claims, and as otherwise permitted or required by applicable law.
Not directly, afaik they never transferred the data.
However they sold access to the data to a bug pharma company (GSK). This was widely publicized. Not sure if that counts: GSK had some ability to look at the data but didn’t have an on premise copy of it.
Also, I worked on the GDPR deletion project. I can attest that they do best effort to delete your data when your request that. At least when I was there, this was the case. One caveat is for coding errors, oversights and bugs.
I had direct knowledge of this. To clarify I believe 23andMe did not give direct access to individual's DNA data.
What 23andMe was selling to GSK was the results of GWAS (Genome Wide Association Study) results, which could be used to generate therapeutic candidates.
GWAS is a sort of rudimentary machine learning algorithm that basically maps a phenotype (like propensity for a particular disease) to a region of DNA. From there the drug company can narrow down candidate genes to attempt to develop specific drugs for.
Is the data actually deleted in non-GDPR countries as well?
What data is left behind even after GDPR deletion?
For example, data that is merely disassociated with your account but will forever live in their system.
I did not, but that’s because I joined late and had a high strike price. I also turned down a second market offer to sell at around $15/share. Oops.
Many people sold during internal private liquidity events, and they did well. If you joined early you did well.
No, generally not. 23andMe only ever did ISOs prior to the SPAC merger, not RSUs, and they had a quite high strike price. There was a 6 month insider lock up against selling, so by the time most of us could sell, the price had tanked. By the time I was able to sell, the share price was so low that only my oldest options from when I started at the company in 2014 were in the money.
I ended up making a few 10s of thousands. Not the 100s it would have taken to compensate for the low pay for all those years. And I probably did better than most by selling what I could when I could. Most people weren't in the money at all.
Maybe if you timed the market perfectly you could have done well. I don't know that anyone did.
The company bet heavily on pharma/genomics, and it was a bad bet.
When I was there, people were pretty confident in this bet. They had just signed a huge deal with GSK, so it seemed to be going well. There wasn't widespread dissent at the time (~2016-2017). I imagine its different now that the stock price has crashed over 10x.
The company did follow Ancestry.com pretty closely. Ancestry did not bet heavily on genomics. Instead, they bet heavily on a subscription model and focused more on consumer interest in their ancestors. This has worked out a lot better for them than 23andMe.
FWIW, I agree it's obvious in retrospect that pharma was a bad bet. Leadership should have made better decisions.
As usual: “It depends’. Data on gene variants related to the first steps in drug metabolism can be quite useful both at home and clinically—e.g, your own responses to ethanol, caffeine, and many over-the-counter and prescribed drugs.
St Jude Children’s Research Hospital routinely genotypes/sequences children before drug treatments to optimize initial doses. It makes a huge difference in outcomes for most cancer patients.
But chronic age-related diseases that older individuals care about most are too complicated and too strongly affected by environmental factors to be well predicted by low coverage sequencing or genotyping platforms. Even deep sequencing and perfect telomere-to-telomere personal genome assemblies (still about a $10,000 to 20,000 effort) will not be sufficient. You really need the patient’s full history and deep omics data. Michael P Snyder and colleagues at Stanford are getting close to this type of “future preventive health care” with a focus on type 2 diabetes.
https://pubmed.ncbi.nlm.nih.gov/?term=michael+mo+stanford&so...
Polygenic risk scores based in simple GWAS results and additive genetic models are uninformative (or minimally useful) wrt clinical care for complex diseases—even those that have moderate heritability. There are simple way too many variables, too many undefined gene-by-environmental effects, and too many non-additive effects (epistasis). Polygenic risk scores typically account for less than 20% of variance in disease traits.
Coming around full circle though—-these platforms ARE useful for pharmacogenetic predictions of initial metabolic processing of drugs—- getting us closer to the right dose the first time.
And the SNP genotypes generated by 23andMe are also valuable predictors for a subset of variants that contribute to nearly monogenic disorders.
Just for some perspective from outside the US: I work at a bank in a country subject to GDPR. I have access to customer data, as do most people on my team.
I worked at a US startup from my world country and that company dealt exclusively with PII (i.e. IDs, face etc) of people, including from the armed forces, of NA and some European countries.
I had access to any data I wanted to see, download on my work laptop (we all worked remotely). I didn't have to ask anyone, I didn't have to justify it, and AFAIK it was not audited. Logged? I don't know, maybe it was. I had sent mail once regarding to a director and SVP and never received even an ack. Oh by the way, everybody had access, not just me. For that no other access type was required either. Company email was sufficient. And IIRC even the stage env. had product data and stage was truly fair game.
No, I did not misuse and used it handful of times for debugging purposes. I doubt anybody did.
Some background from Freakonomics a few months ago:
https://freakonomics.com/podcast/why-is-23andme-going-under-...
A little trivia: since the recent 23andMe breach, the desci project genomesdao has launched a new service that allows 23andMe data exports to be imported into their platform. They then attract pharmaceuticals to make specific requests and share the profit from the requests. They'll explain it better on the site! They've been around since at least 2018, have won recognised innovation awards and is run by scientists, so not your typical crypto project.
Disclaimer: 23andMe customer and genomesdao holder.
For the record, 23andme is one of the few companies where the CEO never once responded to one of my emails (2017, 2019, 2022, 2024).
You can make a lot of money just by betting on companies where the CEO (or the CEO's office) takes listening to customers'(who are rooting for them!) emails seriously, and shorting those that do not.
You cold e-mail CEOs and get a >70% hitrate? I gotta try this more often.
I do put try to make them a mix of feedback + entertainment.
Example
To: jeff@amazon.com
subject: The Day the Music Died
I was looking forward to playing my Yamaha Digital Piano that I ordered from Amazon today when I got home from work at "the country club". Instead I'm stuck tapping this UPS "Delivery Attempted" notice and the melodies just aren't coming through.
?
In the last 6 months I ordered 37 packages from Amazon. I needed to be home for zero.
Why didn't Amazon send me an email, phone call, text, message through Echo, notification through one of my four Amazon iPhone apps, or airdrop from a drone alerting me that I needed to be there for this package?
I also have an Amazon Echo at home so Alexa should have an idea of my schedule and know that the odds of a successful delivery at 4:42pm on a weekday are 1%. Now I'm listening to Alexa play sad songs instead of belting out great new tunes on my Yamaha.
Also, why didn't the UPS driver call or text me when he or she was at my building to ask if it was okay to leave the package? This would have saved them a minimum of 1 trip and I wouldn't have to bet the delivery of my $700 package to a half a cent sticky note stuck to my door being pelted by the Seattle rain.
OK love ya bye
-Breck
If this is representative of the quality of your emails, I would read every one that you published.
Yes, they solved it. I forget what they did in that case, but IIRC it was like, that night or early next morning the piano showed up. And I got a phone call from someone in JB's office.
Even last week I had a similar experience:
Date: Fri, 13 Sep 2024 06:24:04 -1000
Subject: the journey of the thermometer
From: Breck Yunits <breck7@gmail.com>
To: jeff@amazon.com
ORDER NUMBER 112-0027370-6957065
Please don't ask me to explain. Look at the shipping history. The package has travelled from Hawaii to California. I am in Hawaii. WTF?? October deliver for an amazon prime 2 day?!!!!
please fix.
thanks lov ya bye!
------
Within hours I got a voicemail:
"Hi, this is Heidi calling from the Amazon executive customer department calling you regarding to the email you sent to Andy Jesse"
And Amazon identified and fixed the problem and gave me a $30 gift card.
----
I tell all the startups I invest in: if the CEO of $1T Amazon with 1.6 million employees can intelligently handle receiving constructive customer emails over a $10 purchase, why can't you?
This triggers my "don't overwhelm your correspondent" watchdog.
I'm occasionally prone to self-indulgence in written correspondence.
... (There, I said it.)
I hope that my coworkers are blissfully unaware of this tendency. Sometimes I must write dense things which they must read, because a formal record is required and technology is complicated. But I hope they perceive me as a crisp and clear communicator who makes copious but appropriate use of sentence fragments in bullet point form (not too deeply-nested). With judicious and limited use of humor, and only of the sort that is adequately subtle to be overlooked by any who would not readily accept it.
I would especially hesitate to attempt anything but the most simplifed and direct version of my message in a request for help!
Although I guess when you're emailing a consumer product corp c-suite, you have a greater expectation of patience for customer communications, and of general literacy.
In truth, the exec's mail-tenders are likely relieved to receive anything not written in a hostile tone, and perhaps delighted by anything in complete sentences. All the more so, if they are able to help.
Thank you. May every minor wickedness find its appreciative audience.
I have a similar success rate with a few emails to top CEOs in companies such as AMEX, and Toshiba Japan. It is probably that someone else is shadowing them but they acted very quickly with specific issues, and less hierarchical people follow the issues until they were success. Better than support.
It's not the CEO replying, it's one of his/her assistants.
I suppose it depends if your email is relevant to their interests.
My CEO response rate is about 1%. That one time when DHH (creator of Ruby on Rails) responded to my email about my software library 10 years ago. It wasn't even a Ruby library. What a nice guy. A great CEO and engineer as well.
I too can add that my in-person interactions with DHH were incredibly pleasant. What an amazing person!
I'm curious to know the topic of these emails. I never once thought to cold email the CEO of a company. (Then again maybe that's why I'm a programmer, not a CEO myself.)
Years ago, after months of pushback from Apple Authorised Service Provider I decided to write an email to Tim Cook... Got a phone call soon after straight from HQ and my issue was resolved - it's sometimes worth to escalate high up if the situation is absolutely out of company values
What is a good alternative to 23andMe that retain confidentiality, and is it enough to use/play with Python packages for genetics
Nebula might be worth checking out, I've heard it's pretty good but I have not personally used it.
DIY tips please on how to do it
What do I need, centrifuges ?, Electrophoresis gel ?, X-RAY machines,
Or hand held dna scanning devices like these : https://arstechnica.com/science/2018/01/pocket-sized-dna-rea...
?
https://stackoverflow.blog/2021/12/24/sequencing-your-dna-wi...
~$800 USB dongle (above article was published in 2021 and the price has gone down) plus consumables.
Literally just one day after 23andMe presented positive phase 2 clinical results for two anti-cancer drugs: https://therapeutics.23andme.com/news-and-research/
The board of directors of 23andMe just resigned in protest. The CEO, Anne Wojcicki (who's sister Susan died of lung cancer last month, and was the former CEO of YouTube) had tried to low ball take the company private at only $0.40 a share -- a more than 96% drop from its deSPAC price.
For reference, right now the market cap of 23andMe is $172 million, its closest competitor Ancestry.com was bought out by the Blackstone group for $4.7 billion, and cumulative sales of KeyTruda - an anti-cancer drug in the same family as the one being developed by 23andMe had cumulative sales of $25 billion by 2023.
Feels like the main thing holding this company back is the CEO and lack of corporate governance (due to majority shareholder control resting in the hands of one person)