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)
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 would say it's a little more murky than that. My anecdotal experience is in the context of Ancestry.com. Effectively, I might not consent to having my information shared but if my uncle, nephew, etc. does it is effectively still being shared.
> 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.
A first cousin of mine found a (adult) daughter he didn’t know he had through it. They are in the process of building a relationship. It was a significant/important discovery for them even without having a prior relationship.
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.
I run a small web server for a dataset we call the "BIGFAM" - Geneweb with a proxy on the front. It has >120,000 individuals in it. In places it is not so much a tree as a thicket!
That data is hard fought and won by a relative who conducts meticulous research as a hobby. They've been at it for a good 20 odd years now.
How has Geneweb worked for you? Is it straightforward enough to use if you are somewhat technical, or do the “wizards” need to have a solid understanding of OCaml to make it worthwhile?
My daughter has been interested for years in delving into our different familial trees and has extensive records on paper and in various digital formats. She isn’t overly technical but could be taught to use a web interface if she’d gain value from the effort.
In my humble opinion as an amateur genealogist, after a year or so with paid services (Ancestry, Myheritage) I find there is really no good reason not to use a combination of Wikitree and Familysearch, both free, if we ignore DNA tests.
Especially familysearch allows private profiles, no need to share. Wikitree has a policy of "do not add living people", but it is possible to do and Ive done it for close family.
Yes, this means sharing fairly freely, but I do not see a reason not to. Unless you want a fantasy tree, sharing your tree will make it higher quality. We all make mistakes here and there.
Wikitree especially requires you add sources to your work, which might feel odd for a personal tree of course.
I personally think that Webtrees might be the best bet but that is GEDCOM based and GEDCOM cannot store certain things. My relative is an expert in genealogy and if they say that GEDCOM doesn't cut it then it probably doesn't, eventually. I suggest you look into Webtrees - its a LAMP job.
My relative uses The Master Genealogist (TMG) which is no longer developed. We are both Linux users and he uses Wine bottles to keep it alive. I will probably end up hosting a Win XP VM for it.
Geneweb is seeing renewed development and is really fast. The plan is to migrate to Geneweb. The fields that TMG has that GEDCOM can't handle are turned into NOTES which is probably good enough.
You do not have to get to grips with OCAML to run it. The Github releases shield you from that. It is a bit idiosyncratic but it does work!
Genealogy is a very deep and complicated subject with as many opinions as there are practitioners. You could try both Webtrees and Geneweb and use GEDCOM to act as an intermediary data format until you decide which to use full time. Do make sure you listen to her. She may potentially have some "odd" ideas about data that may not have occurred to you. Be warned - genealogists are a breed apart and any reasonably serious one has damn good reasons for that! There are also quite a few reasons for becoming a genealogist as well as methods used.
Im trying, really trying to understand what BIGFAM is about. Is it related to gut biome, and what the bacteria eats, and trying to find the genes for that? Or am I completely lost.
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.
In addition, for people who were adopted and didn't know their birth parents, it can be interesting to connect with your biological family through ancestry work.
My mother is adopted and 23andMe and Ancestry have both provided me with a way of connecting with relatives as far apart as Canada and Australia. Before “revealing” my connection to them I’ve stated that in doing so I may reveal information about a shared ancestor that doesn’t put that person in the best light (my mum was the result of a short affair between a married man and a much younger woman at the end of World War 2). All have stated they are ok with this and in most cases had no contact to the ancestor involved anyway.
The family tree is a big deal for Mormons due to their religious beliefs. They can baptise their ancestors, providing lost souls with a chance to convert after death.
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.
Yep, this happened to me. Got a random message from a half brother, dug deeper into my ancestry and realized that my dad isn’t actually my biological father. It was certainly an odd week for me when I found out.
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:
If you are sleeping with a prostitute isn’t there like an implied contract that you aren’t responsible for any resulting child? That is practically the entire purpose of prostitution.
If you sleep with someone you are responsible for any resulting child.
Prostitution in the Philippines is illegal so any explicit or implicit contract would be void anyway. Not to mention that consent is questionable anyway when most of these women are either trafficked or forced by economic hardship to partake in it.
I got a photo of my great-great grandfather as a result of a DNA match as well as lots of other information about him - so I suppose it depends if that sort thing interests you or not.
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.
Another common use case is "I wonder where all my family went after $War"; some families are still trying to figure out where their parents' families ended up at after WW2, or if they survived at all.
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.)
It's sad that we have come to a point where people frown upon a company that makes a product and sells it, without luring their customers in with monthly subscriptions.
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.
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.
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?
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 the one offering 20% over listed price is the one causing the listed price to be far more than 20% below what the company could be worth if they were running it properly, most people would consider that to be a ripoff.
As a sale, yes, but to take it private no. After taking the company private they could then manage the company properly and make all of the upside, completely screwing over the shareholders who they bought out.
That would completely be fraud, but seems pretty far fetched.
They have been (miss)managing the company about the same for 18 years, so it would have to be one of the most epic cons of all time.
On the other hand, partial owners and management take companies private all the time. It is an extremely common occurrence. It and PE buyout are probably the two most common ways.
Based on my parent poster's question we're already operating from the assumption that happening and I'm just explaining why that's bad, not how likely it is.
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.
I don't think you're properly modeling a truly ambitious person whose basic needs are already fully-met for life.
Anne Wojicki is already sufficiently wealthy – net worth $150m+? – that maybe what really interests her is playing hardball for (say) $10B+ instead of just a few hundred million more? Or for the control & glory of shepherding forward some breakthrough cancer treatments that the other investors might simply treat as financial options to sell early?
And, perhaps she's got the votes & de facto IP control & legal budget to think she's got a good chance of winning, and even a loss can't cut her out?
The viability and profitability of the strategy depend critically on the ownership and control position of the CEO. Many CEOs do not have all that much stock, in percentage terms. If they have access to resources and sufficient board control they could privatize, reset the cap table, and reorganize.
If they were to reorganize first and produce a company worth as much as its competitors, they only get eg 5% of eg 30B, which after taxes makes them maybe a billionaire. Reorg and do the same thing and they could be looking at control and $10-20B.
Where tens of billions of dollars are involved, “really complicated” and “high risk” plays are basically table stakes.
Honestly, it would be more surprising to me if this sort of thing never happened. In politics it happens fairly regularly (entryism, agent provocateurs etc.) so why wouldn't it happen in business? It would take even less coordination, all it would take is a bit of personal loyalty between top leaders which - shock and horror! - didn't disappear when one of them changed company.
I don't know the first thing wrt how 23andMe has its governance and voting setup, but the letter seems to imply the CEO has majority power or, at least, a large enough plurality that it is a one-person-show:
> Because of that difference and because of your concentrated voting power, we believe that it is in the best interests of the Company’s shareholders that we resign
EDIT: But that brings up a different question: If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
> EDIT: But that brings up a different question: If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
1. Less legal oversight and paperwork.
2. I don’t know the terms of the buyout, but if this means the CEO, family, friends, etc (“insiders”) become the new shareholders, then any future upside will be distributed to insiders not the open market.
> If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
I don't know their governance structure, but the CEO may have a majority of votes, but not own a majority of the actual shares. Being able to take the company private would give her (and her other investors) full economic control as well as voting control.
This is risky ground, of course. Even with voting control, legally the CEO cannot screw over the minority shareholders.
> But that brings up a different question: If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
Also the question of "what powers does the board even have then?"
>But that brings up a different question: If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
voting power dictates control. Ownership dictates rights to profits.
you can have full control with 51% ownership, but you still only get 51% of profits.
The CEO owns 49% of the voting power so the board is pretty much toothless. Facing a direct conflict with her, loudly resigning is probably about the best they could do.
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.
I'm willing to grant some leeway on a shortsqueeze.
If one is willing to grant that the stock "price" for a liquid listing, is the price for a stock at any given time, then you could argue the markets are "wrong" insofar that the price quoted in the open market, is absolutely not the correct price - regardless of the excuse of a short squeeze.
They are not the same because without available shares to short its very easy to recognize there is stuff overpriced in the market and the open market can’t do anything about it because the sellers are limited and they control the ask.
This is absolutely not true of a price that’s “too low”. Anyone, including you, can go hit those asking prices and start to load up. There is also capped downsize risk (as opposed to uncontrolled risk in a short).
This is all to say that it’s possible that company could be worth $9-10/share, but based on all of the information publicly available today, there are effectively tens of thousands of people each swinging billions in capital than are parking it in stuff providing 5% return rather than the 20000% you suggest is there.
So this tells me that you are just much more hopeful for the future of the company than the current financial projections and prospects support.
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.
I stand corrected. Well maybe the board took a day to get together and draft the letter. One of the board members Neal Mohan has to stand before a judge in Google's current anti-trust trial. No doubt he has no time for this stuff.
If the board is resigning, and the company is selling DNA kits, running a telemedicine operation, selling pharmceuticals online AND developing cancer drugs at a 180 million dollar market cap...
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:
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.
This is complicated. The don't just zip up all the customer data and send it over, at least they say that they run aggregated queries for GSK and just tell them the answer. But then they say that the data is "anonymized" before this, which seems unnecessary and impossible.
Imho it's very difficult to anonymize any data, and especially something like DNA. Without an external audit amd some mathematical guarantee (e.g. differntial privacy) I work on the assumption that they do the bare minimum to pass legal muster but anyone who made the effort could confidently associate the data with real people after the fact.
OP here. These headlines are simply exaggerated. 23andme sells mostly anonymous aggregated GWAS mapping results to companies like GSK as far as I'm aware
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)
That's a good question- I think he signed a consent form that would have allowed additional research on his donations. TBH my dad was suprised but pleased by the outcome.
I'm glad your dad was happy about it, but it does kind of speak to the potential dangers of giving out your DNA (which is concerns many have around 23andMe).
> 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.
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.
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.
> 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
You’re right for the wrong reasons. (EDIT: I'm wrong for no reason.)
Dow Jones is obsolete [1]. Its value is in its brand, i.e. other people look at it.
The other factors you mention are noise. Relevant to a trader or market maker with infintessimal time horizons. But irrelevant to an investor thinking even in months. The American markets are simply too deep. The totality of dollars at work by MAGA voters, game-playing hedge funds and money launderers--through the stock market--is negligible. (Lots of political tea-leave reading funds have been attempted. Zero prevail.)
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.
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.
She (the CEO) has a fiduciary duty to act in the best interests of the company and its shareholders. Intentionally driving a company into bankruptcy for personal gain is a massive breach of that duty and opens her up to all kinds of legal trouble. So I would think that's a very bad idea.
They're going bankrupt because they're almost out of cash [1]. The CEO is holding public investors hostage with the low ball take private offer LarsDu88 mentioned. The stock, NASDAQ: ME, currently trades at 29 cents/share [2] and will be delisted shortly [3]. Their failure to secure their customer DNA data with MFA cost them a $30M fine they must pay [4].
My comment you replied to was attempting to communicate that, because the CEO holds most of the control over the company, it is preferable to let it slip into bankruptcy (where equity and their control will be wiped out) vs continuing allowing them the control they have, which is not leading to a favorable outcome for the enterprise. This is potentially superior to recapitalizing the existing enterprise and continuing to allow the CEO to light capital on fire.
At that burn rate it seems like the only recourse other than a buy out offer from another company at this point is to shutdown everything not related to cancer drug development and self-financing that endeavor.
I'm just arguing that she can't let the company go bankrupt when she placed a bid for $0.40. Even if she could, she could loose control of the company when all shareholders get wiped out, not sure the court will let her keep 70% through bankruptcy.
Acting as a fiduciary would entail seeking a buyer at the best price possible, not a low "take private" offer. Can the CEO demonstrate they're working to find someone to buy them?
> A special committee formed by the company rejected Wojcicki's previous proposal, deeming it insufficient and not in the best interest of the non-affiliated shareholders.
If we agree that public market are the closest we can get to realtime market value, it's hard to argue it's easy to find a better offer. Otherwise, many other companies that are down 95% from their 2021 highs should just find a buyer of their companies to maximize shareholders value.
I think we are disappointed that the market is giving $ME and many other companies non-ZIRP valuations at 95% discounts, and we don't have the cash to buy them at the bottom, like she can.
Unless the data turns out to be fraudulent (ugh!), then 23 & Me seems like it has actually promising products currently going through their development process(es).
nah. 23andMe actually works. they use real science to do genome sequencing, and that's provable. Theranos never worked, and was nothing but lies and hype.
But having working science does not make a successful business plan.
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)
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.
If you are in Salt Lake go check out the computers in the big fancy temple temple there, they used to help you research ancestry stuff. Though all that could have been because we were there on some sort of VIP thing and it might not be open to the public. Interesting side, it's missionaries there that help you. Only instead of young men shipped out into the world, it was attractive young women on missionary to the temple from all over the world.
It is a pretty important aspect of Latter Day Saint theology. They still do it but officially you can only baptize your own family members with the permission of surviving family members. These guidelines are not always followed. Additionally they have said they removed people from their rosters that were improperly baptized but the members I have talked with are skeptical and found it a bit laughable that the church removing a name from a database would somehow undo a sacred ritual.
On the topic of laughability, I would propose that "invoking a dead stranger's name in a self-significant ritual" is absurd to do, and also absurd to be offended by.
I hereby grant permission for my name to be invoked in all rituals, sacred and profane, by all current and future living persons. And I'll laugh at you in advance.
Can you show damages? If you can win a lawsuit here that would be great, paving the way for sueing Christians for their passive aggressive 'I'll pray for you' nonsense would be amazing.
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...
Nothing but terms and conditions of the website. That's how Paul Holes identified the Golden State Killer, he created a fake profile and sent in the DNA from a crime scene and worked backwards from the results to find a suspect.
How would that avoid PII? One assumes there would need to be an email address to recover that account, and that would likely link to every single detail about the owner.
Unless you are suggesting they publish the most PII there is, you should propably specify that the data they should publish should be aggregated non-identifying information next to the number, not the actual DNa strings.
> 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.
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.
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.
> But 'a distraction from fines'? Fines do nothing to help those affected by such breaches
Bigger fines. Fines that bankrupt the company. Note: bankrupt. Not shut down. Clean out the shareholders and upper management, possibly spin some stuff off or even break it up. (There is this popular conception that bankruptcy means an F-35 bombs the company’s offices and factories and it’s plain wrong.)
Corporate death penalty is a distraction from bigger fines.
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.
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?
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.
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.
Was there an internal sense that the business model was flawed? You can only sell so many DNA tests to people, and the pharma research angle always felt like more of a pipe dream than a viable business.
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.
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.
The company was not very well run so I’m not surprised. Their stock price has tanked over 10x since IPO, and it dropped by half in the employee lockout period after IPO.
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.
We quit. You didn't give us a real offer, so we're out. We still believe in the company, but you have too much control, so we're leaving to avoid a fight. We did our best, but it's time to go.
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.
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.
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.
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.
Anne gave us the cold shoulder, too. if you're not in her list of people she wants to talk to, she'll ignore you. Susan was very different- extremely open and caring if you sent her an email when she was VP of Ads.
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.)
i have no idea. i've sent sam many emails. that's just one. i'm sure most of my ideas are bad, but I like to pretend that 1 in 10 are a worthwhile tip.
he (or his office/AGI reply bot) always humors me into at least believing he's listening ;)
(he has also always generously provided me with great guidance many times over the years, like when he advised me to take the MSFT offer we got in 2014, when I was on the fence, which turned out to be the right move 110%)
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
I skimmed their website and it doesn't seem like they're promising any sort of confidentiality. Maybe there's something buried in their privacy policy, but you'd think that privacy would be a pretty big selling point?
Sure. Someone who has their data in 23andme was someplace where something horrible happened. Law enforcement has no leads, so they process the DNA, and find no matches. They subpoena 23andme (or just look at the leaked data, who knows), and that person is now a person of interest. If they don't know they should have a lawyer on their side with them when being questioned, they might talk themselves into prison.
I know it's not exactly the point, but the answer is you always have a lawyer if you're being questioned by the police, especially if you're not the one who called them. This is in no way specific to any DNA related situation. If any law enforcement shows up and has questions for you, you say nothing until you have a lawyer with you.
Doesn't matter. If they're talking to you say you need your lawyer present -- that will end the interrogation, and you might never need a lawyer. But if you don't say that you might end up convicted.
I'm not saying it's fair or right. As with most things in life, the cost/benefit makes it likely you'll have to take some risks, but people need to understand that literally any interaction with any law enforcement without a lawyer present is a risk of things going horrifically badly. This is especially true if they show up and you do not know why. That is a massive set of alarm bells that should be going off.
If you can’t afford a lawyer just say nothing. Nothing you say will help you; anything you say can be used against you. If you say nothing you force them to use other evidence which they likely don’t have.
Police (in the U.S. anyways) are allowed to use ruses almost without limits, so you might not even know you're being interrogated, and your answers can be used against you (and only against you -- never to exculpate you!) in a court of law.
IMO the hearsay rule is way too biased in favor of the government.
Worse! Say you know it's police asking you questions, and the questions are all very harmless, so you answer them, but then you start to get an inkling that you are a suspect, that they like you for some crime, so now you shut up and/or lawyer up, but guess what: your disposition's change from cooperative to non-cooperative can and will be used against you in a court of law!! What, you say? Yes, the SCOTUS in the 2010s (see Salinas vs. Texas, from.. 2014 IIRC) greatly reduced the 5th Amendment's protections in this way. If you're talking then clam up, the fact that you clammed up -and at what particular question- can be used against you. And if you never said a word to them, that too can be used against you! The only thing that works is to tell them very early on that you will only talk to them with your lawyer present [and since you don't have a lawyer yet you might never talk to them] then follow through.
If the police are talking to you it's either a) they think your testimony can convict someone else, and/or b) they like you for some crime and want to give you ample opportunity to convict yourself of it even if you didn't commit it (they may not know that, but they may like you so much for it that their bias is too strong to see that you're innocent) and even if you have no idea what the heck they're talking about (because they don't even have to tell you).
See all of professor James Duane's videos on this topic, starting with Don't Talk to Police (this one is pre-Salinas), and then the later post-Salinas reprise(s) of it.
I mean, assume any time you're talking with the police, you're being interrogated. If you called them yourself for something, then you've decided to take that risk, but that's also a situation where you're less likely to be in trouble yourself, though there's still a risk.
The company seems to be in rough condition. Say they go bankrupt and an ad-tech data broker buys their assets. Now DraftKings can laser focus their ads to folks genetically predisposed to addiction.
You’d have to work out what variants predispose for that which is no easy task. And once you did that you don’t even really need individual dna data. You might find say a swedish population tends to have the variant and you just target swedes in general.
> Say they go bankrupt and an ad-tech data broker buys their assets. Now DraftKings can laser focus their ads to folks genetically predisposed to addiction.
Can an insurance company deny claim based on your DNA? They deny claims for pre-existing condition that you hid from the, which would be the wrong thing to do on your part. They cannot deny claim based on pre existing disposition. Practically everyone is predisposed for getting cancer by merely being human, you might even have cancerous cells in your body right now, that you body will destroy in a couple of minutes.
> Can even one single person here articulate their specific fears of using 23andme
Sure. I find out my competitor for the top role has a degenerative disease, e.g. Parkinson’s. It’s not relevant for many years. But I use it, subtly, to shape opinion.
More pointedly: we are in an era of mass disinformation. The simple fact that somebody used 23andMe makes any lie about it somewhat credible.
Well for one, English is not my first language, so take it with a grain of salt. Also: when I use genocide as as a verb, it means there is a concerted effort to kill of a group of humans, that you happen to be a part of.
I know we live in an individualist society, but when you are murdered as part of a genocide that has nothing to do with you as an individual, which is a significant part of the horror of the whole thing. You are then murdered because someone thought you belonged to a group that should be wiped of the face of the earth. Whether you really belonged to that group, whether you share the ideology of the group or of those doing the genocide, wheter you are a really nice individual has nothing to do with it.
If I've committed a crime and gotten away with it for several decades, I don't need a relative to NARC on me by giving 23 and me and the feds a DNA sample, thank you very much.
It's bad enough they took my fingerprints when I worked for a school district.
Besides the obvious examples of gathering a nice database to use for genocidal purposes... (sure lot's of idiots like to say that's overblown or not really a worry, while being alive in a world where there are on-going 'ethnic cleansing' campaigns).
There's also things like - the terms of service include the boilerplate "these terms are subject to change at any time", and I don't want those terms to suddenly change to "we will provide your PII to all insurance companies proactively in exchange for a kickback every time they are able to use it to reject a claim".
I already get hassled by the law somewhat frequently because my house used to be the residence of a criminal (2 owners ago it was used as a rental and that owner evicted said criminal). I don't want to add getting hassled by a bunch of people who came in below the max IQ requirements over someone I've never met because they're from "that side" of the family.
When I was sequenced, a bunch of genetic counselors at Illumina analyzed it and said they couldn't find a single gene mutation that was linked to increased risk of disease, which was a surprise to me but is really absence of information rather than information of absence.
The problem with publicizing genetic information is that you're defacto publicizing large amounts of the genetic information of your relatives, who may not be in a life situation where publicizing it carries no risk. This is also an objection many have to 23andMe.
What if they live in a country in which genetic evidence of a disease can deny or significantly increase the cost of health coverage? Even if you're clear of those for now, a new marker may be discovered tomorrow. Apparently (according another commenter) Life Insurance /can/ legally look at this even in the US. What about employers? What if it puts them on the DNA-evidence hook for a "crime" in their jurisdiction which you and they don't think is an ethical law (evidence of homosexual activity in a country that imprisons for it, or worse).
The crime thing sounds like a huge stretch given it's not actually your DNA.
With the insurance example I'm not sure I have a problem with that? The whole pre-existing condition conversation around health insurance is totally out-of-whack. Insurance was not designed for things you know have happened. It was invented to reduce the downside of things that could happen, commensurate with the risk of that thing happening. It's risk management. It makes zero sense to apply that model to something like universal health coverage. If someone is 100x more likely to get cancer, their insurance premiums should be higher. Just like if I'm a ship captain sailing into the bermuda triangle my premiums should be higher than sailing around the mediterranean.
If you feel that everyone should have healthcare, utilizing health "insurance" for this is the worst of kludges.
Similar experience here, was WGS and running the results against ClinVar came up empty[1] for known disease causing variants. Was not expecting that at all.
But I totally think this is more an absence of information than anything else. We all have a ton of de novo variation and that stuff is not going to be found in the databases.
1. Am carrying two recessive variants linked to a couple extremely rare developmental disorders (prevalence in live births of less than 1 in 10,000,000)
This is very unethical and you should be ashamed of yourself. You leaked 50% of your direct relatives here, 50% of any future or current children you have. Did you ask them for consent?
Perhaps my ethical framework does not match your framework? Note that I start from the premise that genetic data is not possible to keep secret (you shed skin cells in public, state-level agents can get warrants to grab a cup you used from the garbage, etc).
(no, I did not ask my children or my spouse or my parents or any other relatives for "consent").
> Mankind barely noticed when the concept of massively organized information quietly emerged to become a means of social control, a weapon of war, and a roadmap for group destruction.
From IBM and the Holocaust by Edwin Black.
Imagine the "massively organized information" that will be available to people in power in the future. It doesn't have to be a genocide for it to be useful to them. People in power today are fully on board with "social control" and it's so uncontroversial that they talk about it openly.
Why? It's just a record of a group of letters, not your soul. I upload my dna records everywhere I can. Sure I had some surprises but in general I benefit from those services.
The religion on census data of people living in the netherlands also was just a bunch of letters, till the Nazis invaded, then suddenly the bunch of letters got another meaning.
What the Nazis would have done if they had gotten their fingers onto such a ddatabase is anybodies guess.
Only gotta last 80 years, it's pretty rational given the constraints. The what-ifs are unlikely to materialize at all, low probability to happen to you, and avoiding them if they do materialize requires that neither you nor any of your relatives submit their dna or have any contact with the justice system ever.
DNA is already protected from use by insurance companies so that's a future harm that already got squashed.
Funny you picked 80 years. It's been roughly 80 years since members of a certain ethnic group were hunted down, corralled, and murdered because of their lineage and genetics.
And their murderers mostly only had census data and people willing to snitch on their neighbors to go on. A DNA database? Oof.
Thankfully time only goes forward and since I don't expect a large scale ethnic cleansing among the developed world since our birth rates are already below replacement I think we're fine.
Of course, how could I forget. My DNA is also used for medical research so I'm helping develop novel treatments to all manners of genetic diseases, and helping my future relatives uncover health risks.
This would make for a great case study in corporate governance.
I hope someone is writing a book on _Corporate Governance in Silicon Valley_, and include stories from, say, 23andMe, OpenAI, WeWork, Uber, and tons more. I'd pay $$ to read 'em all in one place.
“Nearly every baby born in the U.S. has blood drawn in the immediate hours after their birth, allowing the baby to be tested for a panel of potentially life-threatening inherited disorders. This is a vital public health program, enabling early treatment of newborns with genetic disorders; for them, it can be the difference between a healthy life and an early death.
But recent news suggests that police are seeking access to these newborn blood samples in criminal investigations. Such use of this trove of genetic material — to hunt for evidence that could implicate a child’s relative in a crime — endangers public trust in this vital health program and threatens all Americans’ right to genetic privacy.”
All of our new babies had heel stick blood drawn, won’t the government be the eventual
competitor of 23 and me (since Americans don’t care too much about privacy).
Should, but doesn't as construed by the SCOTUS and the appeals courts below them. I think their reading of the 4th Amendment is in fact mostly right, especially as interpreted in the context of 1789. We could use an amendment to strengthen privacy, but it's hard to write such a thing considering that almost everything we do nowadays is between "somewhat public" and "public".
The traditional favorite game of the supreme court is reducing the bounds of the 4th amendment. At this point its easier to list the things that the 4th protects than it is to list all the exceptions and "well actually not this..." situations the court has carved out.
Not necessarily. Just because the government is collecting everyone's DNA doesn't mean they're gonna create a slick web app for showing you your ancestry results.
That's like asking why the DMV isn't competing with Google for revenue...
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)
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...
"Give the kits as gifts!" and you can learn about your closer relatives /s-ish
I wonder, do the "relatives" know and agree that their information is sent to other person?
…yes that’s how it works? You opt in and choose what you share. They’re quite explicit about it.
> You opt in and choose what you share
Until the company gets breached and your choices mean squat. Thanks, no.
I would say it's a little more murky than that. My anecdotal experience is in the context of Ancestry.com. Effectively, I might not consent to having my information shared but if my uncle, nephew, etc. does it is effectively still being shared.
Yes. You must opt in. When you opt in, you can elect to show your full name, or just initals (may be other options but I opted in long ago).
> 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.
A first cousin of mine found a (adult) daughter he didn’t know he had through it. They are in the process of building a relationship. It was a significant/important discovery for them even without having a prior relationship.
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.
I run a small web server for a dataset we call the "BIGFAM" - Geneweb with a proxy on the front. It has >120,000 individuals in it. In places it is not so much a tree as a thicket!
That data is hard fought and won by a relative who conducts meticulous research as a hobby. They've been at it for a good 20 odd years now.
How has Geneweb worked for you? Is it straightforward enough to use if you are somewhat technical, or do the “wizards” need to have a solid understanding of OCaml to make it worthwhile?
My daughter has been interested for years in delving into our different familial trees and has extensive records on paper and in various digital formats. She isn’t overly technical but could be taught to use a web interface if she’d gain value from the effort.
In my humble opinion as an amateur genealogist, after a year or so with paid services (Ancestry, Myheritage) I find there is really no good reason not to use a combination of Wikitree and Familysearch, both free, if we ignore DNA tests.
Especially familysearch allows private profiles, no need to share. Wikitree has a policy of "do not add living people", but it is possible to do and Ive done it for close family.
Yes, this means sharing fairly freely, but I do not see a reason not to. Unless you want a fantasy tree, sharing your tree will make it higher quality. We all make mistakes here and there.
Wikitree especially requires you add sources to your work, which might feel odd for a personal tree of course.
I personally think that Webtrees might be the best bet but that is GEDCOM based and GEDCOM cannot store certain things. My relative is an expert in genealogy and if they say that GEDCOM doesn't cut it then it probably doesn't, eventually. I suggest you look into Webtrees - its a LAMP job.
My relative uses The Master Genealogist (TMG) which is no longer developed. We are both Linux users and he uses Wine bottles to keep it alive. I will probably end up hosting a Win XP VM for it.
Geneweb is seeing renewed development and is really fast. The plan is to migrate to Geneweb. The fields that TMG has that GEDCOM can't handle are turned into NOTES which is probably good enough.
You do not have to get to grips with OCAML to run it. The Github releases shield you from that. It is a bit idiosyncratic but it does work!
Genealogy is a very deep and complicated subject with as many opinions as there are practitioners. You could try both Webtrees and Geneweb and use GEDCOM to act as an intermediary data format until you decide which to use full time. Do make sure you listen to her. She may potentially have some "odd" ideas about data that may not have occurred to you. Be warned - genealogists are a breed apart and any reasonably serious one has damn good reasons for that! There are also quite a few reasons for becoming a genealogist as well as methods used.
I got GRAMPSWeb working out of 3 containers pretty easily. It's worth checking out as well.
Im trying, really trying to understand what BIGFAM is about. Is it related to gut biome, and what the bacteria eats, and trying to find the genes for that? Or am I completely lost.
Its part of the filename (short for Big Family) that we use to transfer the data via GEDCOM from The Master Genealogist (TMG) to Geneweb.
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.
In addition, for people who were adopted and didn't know their birth parents, it can be interesting to connect with your biological family through ancestry work.
My mother is adopted and 23andMe and Ancestry have both provided me with a way of connecting with relatives as far apart as Canada and Australia. Before “revealing” my connection to them I’ve stated that in doing so I may reveal information about a shared ancestor that doesn’t put that person in the best light (my mum was the result of a short affair between a married man and a much younger woman at the end of World War 2). All have stated they are ok with this and in most cases had no contact to the ancestor involved anyway.
The family tree is a big deal for Mormons due to their religious beliefs. They can baptise their ancestors, providing lost souls with a chance to convert after death.
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.
Yep, this happened to me. Got a random message from a half brother, dug deeper into my ancestry and realized that my dad isn’t actually my biological father. It was certainly an odd week for me when I found out.
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...
If you are sleeping with a prostitute isn’t there like an implied contract that you aren’t responsible for any resulting child? That is practically the entire purpose of prostitution.
If you sleep with someone you are responsible for any resulting child.
Prostitution in the Philippines is illegal so any explicit or implicit contract would be void anyway. Not to mention that consent is questionable anyway when most of these women are either trafficked or forced by economic hardship to partake in it.
A quick Google search suggests that in the US, you're on the hook.
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 got a photo of my great-great grandfather as a result of a DNA match as well as lots of other information about him - so I suppose it depends if that sort thing interests you or not.
My mom (70year old boom) is obsessed with it.
I think she is unhappy that our family line will likely end with me. (only child, who is almost a 40 year old virgin)
If you don't get to see the future you want, consume your time with the past.
Out of curiosity what stops you from romantic pursuits / marriage. If don't want to answer I of course understand.
Family is extremely important to most people
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.
just because you are anti-social, doesn't mean the general public are
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.
Another common use case is "I wonder where all my family went after $War"; some families are still trying to figure out where their parents' families ended up at after WW2, or if they survived at all.
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.
It's sad that we have come to a point where people frown upon a company that makes a product and sells it, without luring their customers in with monthly subscriptions.
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.
Not Jehova's witnesses but the founders are Mormon and the company operates out of Utah.
> 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?
But a genetic analysis to find your "roots" is also something you do once. Does Ancestry have subscriptions for that?
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.
If the one offering 20% over listed price is the one causing the listed price to be far more than 20% below what the company could be worth if they were running it properly, most people would consider that to be a ripoff.
That seems like conspiracy thinking. The stockholders own part of the company with current management, not some hypothetical alternative.
If they sell, they are selling a stake in the real company as it exists, not the alternate reality one.
Think of a more relatable example. . A rental house with crazy tenants sells for less than a vacant one.
If you buy or own a stake in a business that is controlled by poor managers, you are lucky to sell for a 20% premium.
As a sale, yes, but to take it private no. After taking the company private they could then manage the company properly and make all of the upside, completely screwing over the shareholders who they bought out.
Honestly that's borderline fraud.
That would completely be fraud, but seems pretty far fetched.
They have been (miss)managing the company about the same for 18 years, so it would have to be one of the most epic cons of all time.
On the other hand, partial owners and management take companies private all the time. It is an extremely common occurrence. It and PE buyout are probably the two most common ways.
Based on my parent poster's question we're already operating from the assumption that happening and I'm just explaining why that's bad, not how likely it is.
I had a more charitable read of the parent post where they weren't assuming fraud, but just confused
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.
I don't think you're properly modeling a truly ambitious person whose basic needs are already fully-met for life.
Anne Wojicki is already sufficiently wealthy – net worth $150m+? – that maybe what really interests her is playing hardball for (say) $10B+ instead of just a few hundred million more? Or for the control & glory of shepherding forward some breakthrough cancer treatments that the other investors might simply treat as financial options to sell early?
And, perhaps she's got the votes & de facto IP control & legal budget to think she's got a good chance of winning, and even a loss can't cut her out?
Isn't this just bare-knuckle "founder mode"?
The viability and profitability of the strategy depend critically on the ownership and control position of the CEO. Many CEOs do not have all that much stock, in percentage terms. If they have access to resources and sufficient board control they could privatize, reset the cap table, and reorganize.
If they were to reorganize first and produce a company worth as much as its competitors, they only get eg 5% of eg 30B, which after taxes makes them maybe a billionaire. Reorg and do the same thing and they could be looking at control and $10-20B.
Where tens of billions of dollars are involved, “really complicated” and “high risk” plays are basically table stakes.
Was that not a strategy successfully employed by Ford to edge out other investors?
Honestly, it would be more surprising to me if this sort of thing never happened. In politics it happens fairly regularly (entryism, agent provocateurs etc.) so why wouldn't it happen in business? It would take even less coordination, all it would take is a bit of personal loyalty between top leaders which - shock and horror! - didn't disappear when one of them changed company.
I'm confused by this; isn't the board of directors who picks the CEO? Or are they locked in for some period of time and don't want to wait around?
I don't know the first thing wrt how 23andMe has its governance and voting setup, but the letter seems to imply the CEO has majority power or, at least, a large enough plurality that it is a one-person-show:
> Because of that difference and because of your concentrated voting power, we believe that it is in the best interests of the Company’s shareholders that we resign
EDIT: But that brings up a different question: If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
> EDIT: But that brings up a different question: If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
1. Less legal oversight and paperwork.
2. I don’t know the terms of the buyout, but if this means the CEO, family, friends, etc (“insiders”) become the new shareholders, then any future upside will be distributed to insiders not the open market.
You can have company control without having even a majority.
This is similar to what zuckerberg is doing with Meta. Supervoting Class A shares vs common shares, etc.
The arrangement is completely up to the governing docs of the entity.
The CEO does currently control the company without a majority.
Having less legal oversight generally refers to paperwork that needs to be done for the SEC.
> If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
I don't know their governance structure, but the CEO may have a majority of votes, but not own a majority of the actual shares. Being able to take the company private would give her (and her other investors) full economic control as well as voting control.
This is risky ground, of course. Even with voting control, legally the CEO cannot screw over the minority shareholders.
> But that brings up a different question: If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
Also the question of "what powers does the board even have then?"
>But that brings up a different question: If you have majority voting power, why try to take the company private (as it has been suggested by others here)?
voting power dictates control. Ownership dictates rights to profits. you can have full control with 51% ownership, but you still only get 51% of profits.
The CEO owns 49% of the voting power so the board is pretty much toothless. Facing a direct conflict with her, loudly resigning is probably about the best they could do.
It's the ONLY thing they could do.
CEO Founder has a direct conflict of interest with shareholders...
I have Nokia flashbacks
> can the market be THAT wrong?
Yes. Historic examples abound of the market being that wrong. People can and have made fortunes by finding those opportunities.
Which is different from is the market that wrong in this case?
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.
I'm willing to grant some leeway on a shortsqueeze.
If one is willing to grant that the stock "price" for a liquid listing, is the price for a stock at any given time, then you could argue the markets are "wrong" insofar that the price quoted in the open market, is absolutely not the correct price - regardless of the excuse of a short squeeze.
They are not the same because without available shares to short its very easy to recognize there is stuff overpriced in the market and the open market can’t do anything about it because the sellers are limited and they control the ask.
This is absolutely not true of a price that’s “too low”. Anyone, including you, can go hit those asking prices and start to load up. There is also capped downsize risk (as opposed to uncontrolled risk in a short).
This is all to say that it’s possible that company could be worth $9-10/share, but based on all of the information publicly available today, there are effectively tens of thousands of people each swinging billions in capital than are parking it in stuff providing 5% return rather than the 20000% you suggest is there.
So this tells me that you are just much more hopeful for the future of the company than the current financial projections and prospects support.
That's word salad randomly picked from the small book of 'scary words from finance', but you haven't explained what the actual problem is.
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.
Hint: GME bagholder
> 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...
I stand corrected. Well maybe the board took a day to get together and draft the letter. One of the board members Neal Mohan has to stand before a judge in Google's current anti-trust trial. No doubt he has no time for this stuff.
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.
If the board is resigning, and the company is selling DNA kits, running a telemedicine operation, selling pharmceuticals online AND developing cancer drugs at a 180 million dollar market cap...
It's quite possible there was no plan at all...
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!!
Isn't that the case for almost every single VC backed startup?
s/dna/data and you're pretty much any tech business.
>>> 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...
https://investors.23andme.com/news-releases/news-release-det...
This is complicated. The don't just zip up all the customer data and send it over, at least they say that they run aggregated queries for GSK and just tell them the answer. But then they say that the data is "anonymized" before this, which seems unnecessary and impossible.
Imho it's very difficult to anonymize any data, and especially something like DNA. Without an external audit amd some mathematical guarantee (e.g. differntial privacy) I work on the assumption that they do the bare minimum to pass legal muster but anyone who made the effort could confidently associate the data with real people after the fact.
OP here. These headlines are simply exaggerated. 23andme sells mostly anonymous aggregated GWAS mapping results to companies like GSK as far as I'm aware
Pivot to Blockchain AI in 3 ... 2 ... 1 ...
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?
That's a good question- I think he signed a consent form that would have allowed additional research on his donations. TBH my dad was suprised but pleased by the outcome.
I'm glad your dad was happy about it, but it does kind of speak to the potential dangers of giving out your DNA (which is concerns many have around 23andMe).
Funny enough, the entire 23andMe subreddit is purely about ancestry results, but the company marketing is oriented around health.
> 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.
what am I missing? Isn't this good news (the positive phase 2 results)?
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.
you left out "ignored a letter from the FDA telling them to shut down"
Could the hack have been part of the plan all along to depress the share price to make for a cheap buy-out?
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.
> 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
You’re right for the wrong reasons. (EDIT: I'm wrong for no reason.)
Dow Jones is obsolete [1]. Its value is in its brand, i.e. other people look at it.
The other factors you mention are noise. Relevant to a trader or market maker with infintessimal time horizons. But irrelevant to an investor thinking even in months. The American markets are simply too deep. The totality of dollars at work by MAGA voters, game-playing hedge funds and money launderers--through the stock market--is negligible. (Lots of political tea-leave reading funds have been attempted. Zero prevail.)
[1] https://retirementresearcher.com/why-the-dow-doesnt-work/
> NASDAQ: DJT
> Trump Media & Technology Group Corp
https://finance.yahoo.com/quote/DJT/
Ha! Wow. Yes. Thank you.
I thought DJT is just a huge foreign influence campaign to get financial leverage over the "future US president". Can't compare the two.
> The plan was always that DNA could be use for medical research, which is enormously valuable.
Couldn't one just pull a worldcoin and give people $5 for a cheek swab?
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.
Anne Wojcicki is also the exwife of billionaire Google founder Sergey Brin.
I have always felt as if 23andMe was just her pet lil project and it doesn't matter if its ever profitable or not.
"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.
Luck and being in the right place at the right time can’t make a CEO. Anne is a terrible CEO
So why doesn't Ancestry/Blackstone buy out 23andMe? Antitrust? Shareholder control issues?
They are deeply unprofitable and always have been. Looking at FY24, they spent $4 for every $1 in revenue.
> 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.
She (the CEO) has a fiduciary duty to act in the best interests of the company and its shareholders. Intentionally driving a company into bankruptcy for personal gain is a massive breach of that duty and opens her up to all kinds of legal trouble. So I would think that's a very bad idea.
They're going bankrupt because they're almost out of cash [1]. The CEO is holding public investors hostage with the low ball take private offer LarsDu88 mentioned. The stock, NASDAQ: ME, currently trades at 29 cents/share [2] and will be delisted shortly [3]. Their failure to secure their customer DNA data with MFA cost them a $30M fine they must pay [4].
My comment you replied to was attempting to communicate that, because the CEO holds most of the control over the company, it is preferable to let it slip into bankruptcy (where equity and their control will be wiped out) vs continuing allowing them the control they have, which is not leading to a favorable outcome for the enterprise. This is potentially superior to recapitalizing the existing enterprise and continuing to allow the CEO to light capital on fire.
[1] https://investors.23andme.com/news-releases/news-release-det... (draw your attention to quarterly burn rate and cash on hand)
[2] https://finance.yahoo.com/quote/ME/
[3] https://www.bloomberg.com/news/articles/2024-05-10/strugglin... |https://archive.today/yTo01
[4] https://news.ycombinator.com/item?id=41536494
At that burn rate it seems like the only recourse other than a buy out offer from another company at this point is to shutdown everything not related to cancer drug development and self-financing that endeavor.
I'm just arguing that she can't let the company go bankrupt when she placed a bid for $0.40. Even if she could, she could loose control of the company when all shareholders get wiped out, not sure the court will let her keep 70% through bankruptcy.
Acting as a fiduciary would entail seeking a buyer at the best price possible, not a low "take private" offer. Can the CEO demonstrate they're working to find someone to buy them?
Edit: https://finance.yahoo.com/news/23andme-ceo-wojcicki-open-thi...
> A special committee formed by the company rejected Wojcicki's previous proposal, deeming it insufficient and not in the best interest of the non-affiliated shareholders.
If we agree that public market are the closest we can get to realtime market value, it's hard to argue it's easy to find a better offer. Otherwise, many other companies that are down 95% from their 2021 highs should just find a buyer of their companies to maximize shareholders value.
I think we are disappointed that the market is giving $ME and many other companies non-ZIRP valuations at 95% discounts, and we don't have the cash to buy them at the bottom, like she can.
reminds me of Elizabeth Holmes, of Theranos fame. I wonder what will happen...How big or hyped up is 23andme?
Unless the data turns out to be fraudulent (ugh!), then 23 & Me seems like it has actually promising products currently going through their development process(es).
nah. 23andMe actually works. they use real science to do genome sequencing, and that's provable. Theranos never worked, and was nothing but lies and hype.
But having working science does not make a successful business plan.
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.
If you are in Salt Lake go check out the computers in the big fancy temple temple there, they used to help you research ancestry stuff. Though all that could have been because we were there on some sort of VIP thing and it might not be open to the public. Interesting side, it's missionaries there that help you. Only instead of young men shipped out into the world, it was attractive young women on missionary to the temple from all over the world.
I think they stopped doing it. Jewish organizations were absolutely livid once they found out they were baptizing Holocaust victims.
It is a pretty important aspect of Latter Day Saint theology. They still do it but officially you can only baptize your own family members with the permission of surviving family members. These guidelines are not always followed. Additionally they have said they removed people from their rosters that were improperly baptized but the members I have talked with are skeptical and found it a bit laughable that the church removing a name from a database would somehow undo a sacred ritual.
On the topic of laughability, I would propose that "invoking a dead stranger's name in a self-significant ritual" is absurd to do, and also absurd to be offended by.
I hereby grant permission for my name to be invoked in all rituals, sacred and profane, by all current and future living persons. And I'll laugh at you in advance.
Que sera, sera
Whatever will be, will be
The future's not ours to see
Que sera, sera
I'll be recommending this for page one of the hymnal.
And so it begins..
When I remove records from databases I follow the sacred ritual of BEGIN TRANSACTION…COMMIT;
That's one good case where it would be the moral thing to name a kid Robert'); DROP TABLE Baptized;--
I mean I’d see that as an invitation to help myself to anything the church owns that isn’t nailed down.
Can you show damages? If you can win a lawsuit here that would be great, paving the way for sueing Christians for their passive aggressive 'I'll pray for you' nonsense would be amazing.
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.
https://en.wikipedia.org/wiki/23andMe
She founded the company 18 years ago. Google invested like <$10 million at the beginning and pulled out just earlier this year.
When did that happen? A founder was married to Sergei Brin for 8 years but that’s it.
She founded 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.
Well, one of the board members was Neal Mohan
Haha, correct
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.
What prevents anyone from sequencing anyone else's DNA with the current system?
Nothing but terms and conditions of the website. That's how Paul Holes identified the Golden State Killer, he created a fake profile and sent in the DNA from a crime scene and worked backwards from the results to find a suspect.
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.
Great movie and I didn’t realize the title was composed of a nucleic acid sequence until like the 2020s!
Out of curiosity, how is this "much worse" than a breached honeypot of DNA information?
Or just create an account with a username and password and get the results there, like every other company does.
How would that avoid PII? One assumes there would need to be an email address to recover that account, and that would likely link to every single detail about the owner.
If “the account” is just a random number, then what is there to recover?
The IPs you access the site from.
Throwaway email address?
Unless you are suggesting they publish the most PII there is, you should propably specify that the data they should publish should be aggregated non-identifying information next to the number, not the actual DNa strings.
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.
> But 'a distraction from fines'? Fines do nothing to help those affected by such breaches
Bigger fines. Fines that bankrupt the company. Note: bankrupt. Not shut down. Clean out the shareholders and upper management, possibly spin some stuff off or even break it up. (There is this popular conception that bankruptcy means an F-35 bombs the company’s offices and factories and it’s plain wrong.)
Corporate death penalty is a distraction from bigger fines.
To quote... someone? "A fine is a price."
> 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?
The settlement is way lower than what it could have been. The settlement should be seen as positive news for the company's future, not negative.
"data breach"
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?
It's mandatory that they have to disclose this
SEC regulations
I used to work at 23andMe, AMA
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.
Do you have knowledge of sensitive data being sold to third parties?
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?
Yes, the same code runs for all customers
How do they confirm where the requestor is?
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.
did the employees come out ok equity-wise from the spac merger?
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.
Only the ones who cashed out on the private market before the company went public
Was there an internal sense that the business model was flawed? You can only sell so many DNA tests to people, and the pharma research angle always felt like more of a pipe dream than a viable business.
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.
Where are we at in terms of being able to use genetic info for treatments and lifestyle improvements?
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.
Thank you for this wonderful and detailed answer (of which I only understood maybe ~20% of, but still learned a lot)!
I'm not really sure, probably far away. Most of the genomic analysis showed very weak correlations. I was more on software side of things.
did you have access to customer data
Yes but I was one of only a handful of people with this access. It was heavily audited. AFAIK no one ever used it inappropriately.
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.
How many people in the startup?
What is you personal opinion about this news?
The company was not very well run so I’m not surprised. Their stock price has tanked over 10x since IPO, and it dropped by half in the employee lockout period after IPO.
What was your role?
Software engineer
Were you working in the bioinformatics pipeline?
Kind of, dev ops and big data
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.
Bullshit translation:
We quit. You didn't give us a real offer, so we're out. We still believe in the company, but you have too much control, so we're leaving to avoid a fight. We did our best, but it's time to go.
I suspect it goes further.
"You are a liar and we cannot further risk our reputations on your dishonesty."
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.
What was the reply? Give us the gist if you don't want to share the whole thing.
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.
I check the profile when I read crazy comments like the GP's. It looks like a busy life.
I dunno, man. Valve is one of the most profitable private companies ever and GabeN famously replies to cold emails.
Honestly CEOs (and/or their staff) paying attention to customers is a typical marker of successful companies.
It's not the CEO replying, it's one of his/her assistants.
More likely it’ll be the PR dept. The CEO’s assistants might glance at it.
hence why I wrote "(or the CEO's office)"
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!
Anne gave us the cold shoulder, too. if you're not in her list of people she wants to talk to, she'll ignore you. Susan was very different- extremely open and caring if you sent her an email when she was VP of Ads.
Ok, please share more! Who responded and who didn’t?
Responds: Airbnb, Stripe, Amazon, Apple, USAA, Microsoft, OpenAI, AngelList, Mercury, Coinbase, YCombinator (up to 2022) and more.
Didn't: 23andme, VLTA, Reddit, YCombinator (post 2022)
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.)
Most of them are minor ideas like the ones I just copy/pasted below. But sometimes they are longer like this one: https://hub.scroll.pub/applecard/applecard.pdf
-----
Nope, we don't have one yet though it would be a good idea. I'm looping in Joe for this.
Thanks for the nudge!
Nathan Co-founder & CTO Help: www.airbnb.com/help Recent press: Washington Post http://bit.ly/KkEzT
On Mon, Oct 12, 2009 at 11:12 AM, Breck Yunits <breck7@gmail.com> wrote:
just curious why you don't have a favicon (or maybe it just doesn't work on my computer)?
- favicon police
----
Date: Mon, 28 Oct 2019 06:19:24 -1000
Subject: Idea: OpenAI should invest in TabNine which uses GPT-2
From: Breck Yunits <breck7@gmail.com>
To: SArouter@openai.com
The product is one in a million. Hard to code without it now.
But the kid seems overworked and like he's struggling to keep up with demand (https://github.com/zxqfl/TabNine/issues/179#issuecomment-547...)
wow altman hired jacob bc of your email?
i have no idea. i've sent sam many emails. that's just one. i'm sure most of my ideas are bad, but I like to pretend that 1 in 10 are a worthwhile tip.
he (or his office/AGI reply bot) always humors me into at least believing he's listening ;)
(he has also always generously provided me with great guidance many times over the years, like when he advised me to take the MSFT offer we got in 2014, when I was on the fence, which turned out to be the right move 110%)
I’m not parent comment but have received e-mail from Apple (Tim Cook and Steve Jobs), and T-Mobile (John Legere era).
It wasn’t personal emails but rather their assistants. Still a nice touch and issues were always resolved where L1-2 support failed.
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
Hedge Fund Managers hate this one little trick to beat all of their research
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.
https://nebula.org/whole-genome-sequencing-dna-test/
They don't say much about data privacy.
Home lab
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.
Nanopore sequencing fidelity was garbage back in 2021. Not sure what it is now.
slightly better, but still best for long read capability, not fidelity
Would we be able to improve that with multiple runs? eg. 2 our of 3? (Or, ie. are the errors systematic?)
Dante Labs
I skimmed their website and it doesn't seem like they're promising any sort of confidentiality. Maybe there's something buried in their privacy policy, but you'd think that privacy would be a pretty big selling point?
Zero chance I ever give my DNA to one of these companies.
Did your relative?
I'm not a geneticist so I could be totally off the mark; but, to my understanding, the painful part is that is a big disclosure right there
My oldest brother did so I'm already screwed
Can even one single person here articulate their specific fears of using 23andme, or is it all FUD?
Sure. Someone who has their data in 23andme was someplace where something horrible happened. Law enforcement has no leads, so they process the DNA, and find no matches. They subpoena 23andme (or just look at the leaked data, who knows), and that person is now a person of interest. If they don't know they should have a lawyer on their side with them when being questioned, they might talk themselves into prison.
Now imagine that person is innocent.
I know it's not exactly the point, but the answer is you always have a lawyer if you're being questioned by the police, especially if you're not the one who called them. This is in no way specific to any DNA related situation. If any law enforcement shows up and has questions for you, you say nothing until you have a lawyer with you.
Lawyers are expensive. Most people can't afford one for even one encounter with the police, let alone multiple.
Doesn't matter. If they're talking to you say you need your lawyer present -- that will end the interrogation, and you might never need a lawyer. But if you don't say that you might end up convicted.
I'm not saying it's fair or right. As with most things in life, the cost/benefit makes it likely you'll have to take some risks, but people need to understand that literally any interaction with any law enforcement without a lawyer present is a risk of things going horrifically badly. This is especially true if they show up and you do not know why. That is a massive set of alarm bells that should be going off.
If you can’t afford a lawyer just say nothing. Nothing you say will help you; anything you say can be used against you. If you say nothing you force them to use other evidence which they likely don’t have.
Pleading the 5th is free.
Police (in the U.S. anyways) are allowed to use ruses almost without limits, so you might not even know you're being interrogated, and your answers can be used against you (and only against you -- never to exculpate you!) in a court of law.
IMO the hearsay rule is way too biased in favor of the government.
Worse! Say you know it's police asking you questions, and the questions are all very harmless, so you answer them, but then you start to get an inkling that you are a suspect, that they like you for some crime, so now you shut up and/or lawyer up, but guess what: your disposition's change from cooperative to non-cooperative can and will be used against you in a court of law!! What, you say? Yes, the SCOTUS in the 2010s (see Salinas vs. Texas, from.. 2014 IIRC) greatly reduced the 5th Amendment's protections in this way. If you're talking then clam up, the fact that you clammed up -and at what particular question- can be used against you. And if you never said a word to them, that too can be used against you! The only thing that works is to tell them very early on that you will only talk to them with your lawyer present [and since you don't have a lawyer yet you might never talk to them] then follow through.
If the police are talking to you it's either a) they think your testimony can convict someone else, and/or b) they like you for some crime and want to give you ample opportunity to convict yourself of it even if you didn't commit it (they may not know that, but they may like you so much for it that their bias is too strong to see that you're innocent) and even if you have no idea what the heck they're talking about (because they don't even have to tell you).
See all of professor James Duane's videos on this topic, starting with Don't Talk to Police (this one is pre-Salinas), and then the later post-Salinas reprise(s) of it.
I mean, assume any time you're talking with the police, you're being interrogated. If you called them yourself for something, then you've decided to take that risk, but that's also a situation where you're less likely to be in trouble yourself, though there's still a risk.
The company seems to be in rough condition. Say they go bankrupt and an ad-tech data broker buys their assets. Now DraftKings can laser focus their ads to folks genetically predisposed to addiction.
This is both dystopian and hilarious.
23andMe a subsidiary of Pizza Hut... We know exactly what you crave and it ain't anchovies.
You’d have to work out what variants predispose for that which is no easy task. And once you did that you don’t even really need individual dna data. You might find say a swedish population tends to have the variant and you just target swedes in general.
> Say they go bankrupt and an ad-tech data broker buys their assets. Now DraftKings can laser focus their ads to folks genetically predisposed to addiction.
Excellent example, but yikes!
Maybe too far fetched? Company sells/loses data, insurance companies use data to deny coverage, or deem claims as pre-existing.
Can an insurance company deny claim based on your DNA? They deny claims for pre-existing condition that you hid from the, which would be the wrong thing to do on your part. They cannot deny claim based on pre existing disposition. Practically everyone is predisposed for getting cancer by merely being human, you might even have cancerous cells in your body right now, that you body will destroy in a couple of minutes.
Health insurance in the US can't- it's protected by a law called GINA. Life insurance, however, can use DNA information.
> Can even one single person here articulate their specific fears of using 23andme
Sure. I find out my competitor for the top role has a degenerative disease, e.g. Parkinson’s. It’s not relevant for many years. But I use it, subtly, to shape opinion.
More pointedly: we are in an era of mass disinformation. The simple fact that somebody used 23andMe makes any lie about it somewhat credible.
There's a whole book about said fears.
https://www.amazon.com/Change-Agent-Daniel-Suarez/dp/1101984...
Not having control of how my DNA is used. It can be taken by the state with a warrant, but otherwise I have control over it.
Wrong people come into power, decide that they want some sort of purity based one genetic information, you are not it get genocided.
>you are not it [,] get genocided.
Wouldn't the singular be 'un-alived', these fucking days?
Well for one, English is not my first language, so take it with a grain of salt. Also: when I use genocide as as a verb, it means there is a concerted effort to kill of a group of humans, that you happen to be a part of.
I know we live in an individualist society, but when you are murdered as part of a genocide that has nothing to do with you as an individual, which is a significant part of the horror of the whole thing. You are then murdered because someone thought you belonged to a group that should be wiped of the face of the earth. Whether you really belonged to that group, whether you share the ideology of the group or of those doing the genocide, wheter you are a really nice individual has nothing to do with it.
So I chose that word for a reason..
If I've committed a crime and gotten away with it for several decades, I don't need a relative to NARC on me by giving 23 and me and the feds a DNA sample, thank you very much.
It's bad enough they took my fingerprints when I worked for a school district.
Review world history.
Besides the obvious examples of gathering a nice database to use for genocidal purposes... (sure lot's of idiots like to say that's overblown or not really a worry, while being alive in a world where there are on-going 'ethnic cleansing' campaigns).
There's also things like - the terms of service include the boilerplate "these terms are subject to change at any time", and I don't want those terms to suddenly change to "we will provide your PII to all insurance companies proactively in exchange for a kickback every time they are able to use it to reject a claim".
I already get hassled by the law somewhat frequently because my house used to be the residence of a criminal (2 owners ago it was used as a rental and that owner evicted said criminal). I don't want to add getting hassled by a bunch of people who came in below the max IQ requirements over someone I've never met because they're from "that side" of the family.
yeah, it's like the shadow profiles on social media sites. just because you didn't do it, doesn't mean that someone else doesn't
I took an alternate approach: my genome is freely available: https://my.pgp-hms.org/profile/hu80855C
When I was sequenced, a bunch of genetic counselors at Illumina analyzed it and said they couldn't find a single gene mutation that was linked to increased risk of disease, which was a surprise to me but is really absence of information rather than information of absence.
The problem with publicizing genetic information is that you're defacto publicizing large amounts of the genetic information of your relatives, who may not be in a life situation where publicizing it carries no risk. This is also an objection many have to 23andMe.
For example?
What if they live in a country in which genetic evidence of a disease can deny or significantly increase the cost of health coverage? Even if you're clear of those for now, a new marker may be discovered tomorrow. Apparently (according another commenter) Life Insurance /can/ legally look at this even in the US. What about employers? What if it puts them on the DNA-evidence hook for a "crime" in their jurisdiction which you and they don't think is an ethical law (evidence of homosexual activity in a country that imprisons for it, or worse).
The crime thing sounds like a huge stretch given it's not actually your DNA.
With the insurance example I'm not sure I have a problem with that? The whole pre-existing condition conversation around health insurance is totally out-of-whack. Insurance was not designed for things you know have happened. It was invented to reduce the downside of things that could happen, commensurate with the risk of that thing happening. It's risk management. It makes zero sense to apply that model to something like universal health coverage. If someone is 100x more likely to get cancer, their insurance premiums should be higher. Just like if I'm a ship captain sailing into the bermuda triangle my premiums should be higher than sailing around the mediterranean.
If you feel that everyone should have healthcare, utilizing health "insurance" for this is the worst of kludges.
Similar experience here, was WGS and running the results against ClinVar came up empty[1] for known disease causing variants. Was not expecting that at all.
But I totally think this is more an absence of information than anything else. We all have a ton of de novo variation and that stuff is not going to be found in the databases.
1. Am carrying two recessive variants linked to a couple extremely rare developmental disorders (prevalence in live births of less than 1 in 10,000,000)
This is very unethical and you should be ashamed of yourself. You leaked 50% of your direct relatives here, 50% of any future or current children you have. Did you ask them for consent?
Perhaps my ethical framework does not match your framework? Note that I start from the premise that genetic data is not possible to keep secret (you shed skin cells in public, state-level agents can get warrants to grab a cup you used from the garbage, etc).
(no, I did not ask my children or my spouse or my parents or any other relatives for "consent").
Nothing is possible to keep secret if you're talking about state level agents combing through your garbage obviously.
But do you think there might be a difference between leaving out a cup of coffee you drank from versus publishing it and advertising it online?
Even assuming you had a point, which I don't believe you do, it wouldn't be your place to decide this.
You know for certain people won't ever face discrimination or other negative things based on their DNA? Where does this confidence come from?
Why not? What practical harm is caused to you by other people knowing your DNA?
Now or in the future?
Book recommendation for you: “IBM And The Holocaust” by Edwin Black.
If IBM (then known as Hollerith) could do that much damage with German census data on punchcards…
> Mankind barely noticed when the concept of massively organized information quietly emerged to become a means of social control, a weapon of war, and a roadmap for group destruction.
From IBM and the Holocaust by Edwin Black.
Imagine the "massively organized information" that will be available to people in power in the future. It doesn't have to be a genocide for it to be useful to them. People in power today are fully on board with "social control" and it's so uncontroversial that they talk about it openly.
Comments like this are why schools should make liberal arts education mandatory again in the STEM curriculum
Why? It's just a record of a group of letters, not your soul. I upload my dna records everywhere I can. Sure I had some surprises but in general I benefit from those services.
The religion on census data of people living in the netherlands also was just a bunch of letters, till the Nazis invaded, then suddenly the bunch of letters got another meaning.
What the Nazis would have done if they had gotten their fingers onto such a ddatabase is anybodies guess.
high time preference thinking
Only gotta last 80 years, it's pretty rational given the constraints. The what-ifs are unlikely to materialize at all, low probability to happen to you, and avoiding them if they do materialize requires that neither you nor any of your relatives submit their dna or have any contact with the justice system ever.
DNA is already protected from use by insurance companies so that's a future harm that already got squashed.
Funny you picked 80 years. It's been roughly 80 years since members of a certain ethnic group were hunted down, corralled, and murdered because of their lineage and genetics.
And their murderers mostly only had census data and people willing to snitch on their neighbors to go on. A DNA database? Oof.
Thankfully time only goes forward and since I don't expect a large scale ethnic cleansing among the developed world since our birth rates are already below replacement I think we're fine.
Tell that to China, Russia, and Trump.
That's ethical egoism, not rationalism.
Considering the second- and third-order effects of one's own decisions is obligatory in civilized society.
Of course, how could I forget. My DNA is also used for medical research so I'm helping develop novel treatments to all manners of genetic diseases, and helping my future relatives uncover health risks.
blind optimism
Negativity bias.
Years ago I would have agreed with you but I have my anxiety under control now.
This would make for a great case study in corporate governance.
I hope someone is writing a book on _Corporate Governance in Silicon Valley_, and include stories from, say, 23andMe, OpenAI, WeWork, Uber, and tons more. I'd pay $$ to read 'em all in one place.
/sarc
“Nearly every baby born in the U.S. has blood drawn in the immediate hours after their birth, allowing the baby to be tested for a panel of potentially life-threatening inherited disorders. This is a vital public health program, enabling early treatment of newborns with genetic disorders; for them, it can be the difference between a healthy life and an early death.
But recent news suggests that police are seeking access to these newborn blood samples in criminal investigations. Such use of this trove of genetic material — to hunt for evidence that could implicate a child’s relative in a crime — endangers public trust in this vital health program and threatens all Americans’ right to genetic privacy.”
All of our new babies had heel stick blood drawn, won’t the government be the eventual competitor of 23 and me (since Americans don’t care too much about privacy).
https://www.aclu.org/news/privacy-technology/police-are-usin...
My most radical political opinion is that we need a right to privacy enshrined in a constitutional amendment.
And it needs to be robust enough to prevent the government from subpoenaing data collected by private companies.
The 4th Amendment should already do that.
I am very much not an expert, but my understanding is that the third-party doctrine[1] means that it (mostly) doesn't.
[1]: https://en.wikipedia.org/wiki/Third-party_doctrine
Should, but doesn't as construed by the SCOTUS and the appeals courts below them. I think their reading of the 4th Amendment is in fact mostly right, especially as interpreted in the context of 1789. We could use an amendment to strengthen privacy, but it's hard to write such a thing considering that almost everything we do nowadays is between "somewhat public" and "public".
The traditional favorite game of the supreme court is reducing the bounds of the 4th amendment. At this point its easier to list the things that the 4th protects than it is to list all the exceptions and "well actually not this..." situations the court has carved out.
Not necessarily. Just because the government is collecting everyone's DNA doesn't mean they're gonna create a slick web app for showing you your ancestry results.
That's like asking why the DMV isn't competing with Google for revenue...