Considering the long list of awful pharma, insurance, and marketing firms in the world out there, Regeneron is probably one of the better outcomes
slg · 8h ago
Which somewhat undermines all the doomsday scenarios that people have been talking about. Going back to 23andMe going bankrupt in the first place, this data is clearly not worth nearly as much as it would be if any potential buyers thought there was an actual legal path to abusing this data in the way many are predicting. That doesn't mean that won't change in the future and part of the problem here is that there is no putting the toothpaste back in the tube, but buyers don't think this will change anytime soon, which should be an indication that it probably won't.
nextos · 7h ago
DeCODE, which was a very fancy Icelandic company roughly in the same niche as 23andme (founded in the 1990s!), also got bought by a pharma. Amgen in their case. For more background, see: https://en.wikipedia.org/wiki/DeCODE_genetics.
Genetic information is valuable for finding drug targets, but it's generally a poor predictor of disease, except in case of rare monogenic disorders. With the advent of large population studies such as UK Biobank, which include lots of epigenetic information as well, I am not sure if one can get much extra value from 23andme's dataset in a pharmaceutical context.
AlecSchueler · 3h ago
> Which somewhat undermines all the doomsday scenarios that people have been talking about.
Does it though? This is just a temporary stop gap, the data will continue to move and be exchanged, and this company will eventually collapse or be bought out as well.
slg · 2h ago
In a world in which people are willing to wildly speculate on stuff like NFTs and crypto, no one was willing to speculate on purchasing this data. That doesn't mean this data will never have value (which I stipulated in my original comment), but it is a clear indication that no one with the money to afford this data genuinely thinks it is worth the billions it would be if some of the fearmongers' claims were perceived as likely outcomes.
lesuorac · 7h ago
Idk.
Everybody made fun of Elon buying twitter but the spin-off from it (X.ai) was valued enough to buy the original company.
We'll need to wait a bunch of more years to see if the 23andme concerns were unfounded.
mgiampapa · 7h ago
Those are all paper transactions with made up numbers. You need outside money coming in from sane investors for the numbers to mean things.
lesuorac · 3h ago
Fidelity isn't a sane investor?
Crucial X.ai bought out X with a minority of stock. X.ai as in the thing spun out from X to do ai using X's data. Fidelity seems to value X.ai enough to be happy to have gotten more shares of it using the X shares.
I swear if OpenAI happened like 1 year prior to the twitter sale then everybody would have a different opinion about 44 Billion being the correct price for twitter.
mgiampapa · 3h ago
Existing investors can be onboard with the possibility of an exit even if it's less than their investment. From Fidelity's perspective they have a pile of money burned in a fire. Turning the ashes of that pile into what might be a swing for the fences or any type of exit at all is attractive. Also, sometimes good money follows bad to hedge against taking a larger loss on paper and in this case buying favor might get them access to another deal like SpaceX. None of it feels above board, an efficient market in action, or sane from most perspectives.
next_xibalba · 4h ago
Huh? Both the acquisition of Twitter and the ongoing capitalization of X.ai involved real outside money from external investors.
mgiampapa · 4h ago
The sale of X to X.ai at the end of march was not an arms length transaction.
bflesch · 10h ago
They will keep selling and re-selling copies of this dataset as long as there are interested buyers.
pavel_lishin · 10h ago
There may be some sort of exclusivity clause that comes with the sale - though, of course, that's no guarantee of anything.
xxpor · 10h ago
Does the first sale doctrine apply to B2B?
hiatus · 9h ago
First sale doctrine only applies to physical copies.
pavel_lishin · 9h ago
I'm not sure if buying a CD from Walmart is comparable to buying a large business full of people's personal data.
benrapscallion · 9h ago
That’s not what has been happening with DiscovEHR and Regeneron Genetics Center data.
davidcbc · 8h ago
So far
1vuio0pswjnm7 · 7h ago
Licensing, not selling.
shadowgovt · 7h ago
So the database of DNA will continue to be copied, and copied, and copied...
Life, uh, really does find a way!
xyst · 10h ago
There is no "better outcome".
People who got bamboozled into paying for this junk service shouldn’t have their DNA data treated as some commodity that can be traded like a stock.
The sale of this data should be treated as PII and "transfers of ownership" should not be implied. The default for every user should be to delete the data upon sale of company and provide a way for users to opt in to the transfer.
Users should be incentivized and trust (if any at this point) needs to be rebuilt with this new company, not implied.
bananalychee · 8h ago
I paid for a service that gave me useful insights into my ancestry and health profile, and it cost me less than 30 minutes with a teledoc and a basic blood test. I opted out of keeping my sample in storage and using the data for research at the time, and deleted my account and data a few months ago as a matter of general digital hygiene, but even if they didn't honor any of that, I don't see why I should be concerned about it being out there. The privacy concerns were quite obvious and oft-discussed several years ago when I sent my sample in, so I certainly didn't get "bamboozled". I'm sure there are many people who didn't consider that their data may not be private, but how many actually care about that?
JonChesterfield · 7h ago
The ones that are reliant on health insurance to not die and now can't have any because their genotype suggests they might be expensive?
The right solution to that continues to be outlawing genetic risk-based cost scaling. Doing anything else means that we're just deciding people get to live and die due to their genetics and we will systematically encourage that; it's eugenics with extra steps.
That means the only insurer who could afford the risk is the US government.
This is a feature not a bug.
charcircuit · 4h ago
>means that we're just deciding people get to live and die due to their genetics
No, it means that insurance will be more accurately priced since risk will be able to be estimated better.
>it's eugenics with extra steps
Which would lead to a healthier populace.
yawnxyz · 10h ago
It's pretty wild we don't have laws that cover this
specto · 8h ago
That's exactly why I never used it. Unfortunately I have family members who did so it doesn't matter that I avoided it.
bsimpson · 8h ago
That part has never sat right with me.
Grandpa sewed some oats before he got with your grandma? That's his business, not his relatives'.
It's hard to argue that a criminal's rights are being violated if he's found out through a DNA database, but the privacy ramifications overall of them are really unfortunate. The world is moving to a place where your biometrics are on the record, and the government can use them to hunt you down (see also, Global Entry, fingerprinting people who work with kids, Real ID, speed cameras, etc.).
I really don't like that we're being surveilled by default now. It's even creepier when there's now an administration in power that has no respect for prior norms and a long list of perceived enemies.
conradev · 4h ago
I don't like a lot of the things you mentioned, but I do like some of them.
I like that you have to be Live Scanned to be an EMT or work with children. You aren't forced to do those jobs and they do require a higher level of trust. The FBI opened its fingerprint database a century ago now, and it's been used for a lot of good and I'm sure some bad. But more good?
burningChrome · 6h ago
>> The world is moving to a place where your biometrics are on the record
I remember watching GATTACA and thinking how depressing it was in 1997. Its been less than 30 years and we're already here.
yawnxyz · 7h ago
yeah I did bioinformatics for a living and I warned anyone I knew to not get this (or ancestry, etc.)
mrguyorama · 5h ago
It is the obvious eventual outcome in any system that is built as "If it isn't explicitly illegal, it's allowed". We will forever play loophole wackamole until we change our system such that doing bad things isn't allowed just because we haven't named a rule after you yet.
DebtDeflation · 5h ago
>The sale of this data should be treated as PII and "transfers of ownership" should not be implied.
Completely agree. The usual social media esque "it's a free service so you are the product" arguments don't apply here, people paid 23andme for genetic testing.
The good news is:
>"Regeneron pledged to comply with 23andMe’s privacy policy, which allows customers to have their personal information deleted upon request."
There needs to me a massive campaign to convince every single customer to file a data deletion request.
dfxm12 · 5h ago
Completely agree. The usual social media esque "it's a free service so you are the product" arguments don't apply here, people paid 23andme for genetic testing.
This is important: don't assume that because you're paying for a service that your personal data isn't still being mined. It doesn't matter if you fairly, over or under pay for a service. There's nothing illegal or uncommon about that.
As noted therein, you need to request a download well before you actually delete your account, since the former requires to batch work to complete and the latter will cancel any in-progress requests.
SlightlyLeftPad · 8h ago
I sense a lawsuit incoming that could lead to a supreme court decision on the basis of this being medical data, who actually owns that data? It really isn’t 23andme’s dna to sell to the highest bidder, it’s the customer’s protected health data, and would fall under HIPAA.
malfist · 7h ago
With this corporatist court? You'd be lucky if they don't reverse the ban on using the data for health insurance and all privacy laws at the same time
wyager · 6h ago
> reverse the ban on using the data for health insurance
Right now, health "insurance" is transparently a subsidy scheme where the healthy subsidize the unhealthy. I wonder, if "insurance" companies were allowed to operate as actual actuarial net-neutral-EV honest-to-god insurance companies again, which political coalition would get net savings? I could see it going either way. Conceivably, the efficiency gains from having actual insurance again would result in net-positive EV for both sides.
criddell · 6h ago
Be careful what you wish for. If this goes to the current court, having HIPAA struck down wouldn't be all that shocking.
westmeal · 8h ago
You're making too much sense
AStonesThrow · 2h ago
23andMe doesn't fall under HIPAA at all. HIPAA is scoped to only cover specific entities. Once someone sells/gives your PHI to a non-HIPAA entity, then it's no longer private at all. There are usually disclaimers and warnings about this from providers when you release such things.
This is because HIPAA isn't designed to protect your privacy or your data but it's designed to protect the providers and insurance carriers. It's covering their legal asses and maximizing difficulty for everyone else to access information about what they've done to you. It's about protecting their investment.
If HIPAA were designed to protect your privacy, then HIPAA would apply to your data or you personally, rather than the narrow scope of regulated entities.
butlike · 8h ago
I Want To Believe.
blitzar · 11h ago
> Bankrupt genetic-testing firm 23andMe agreed to sell its data bank, which once contained DNA samples from about 15 million people, to the drug developer Regeneron Pharmaceuticals for $256 million.
Some juicy data they sold there.
solarkraft · 11h ago
$17 per person. quite a number.
wiether · 10h ago
And to think that most of those 15 million people even gave their own money so that 23&Me could sold them for that price later on!
burnt-resistor · 5h ago
It's like Amazon Echo appliances paying to welcome ads and Big Brother but even more invasive. A DNA database hack would be hard to quantify the risks including personalized or (more far fetched) ethnic biogenetic weapons, insurance and employment discrimination, police and intelligence service surveillance, involuntary parentage and relative revelation.
micromacrofoot · 10h ago
They weren't donations, 23andMe provided a service people thought was worth it at the time of purchase
davidcbc · 10h ago
Had they known all their data was going to be sold later they may have reconsidered whether that service was worth it.
cheeseomlit · 10h ago
Based on my conversations with friends who paid for 23andMe they probably wouldn't have cared, and likely still don't. 23andMe customers are the kind of people who put Alexas in their bedroom
rvnx · 10h ago
From Day 1, it was Google in the shadows of the company (due to the connection with Wojcicki), so it's obvious that a Google-connected company would try to monetize the data.
Now that being said, when it was launched, 23andme was the only way to have very affordable and high-quality and reliable DNA scans.
This data is very useful to improve your quality of life today using tools like Promethease. This to be weighted, against a risk that "potentially" someone may use maliciously in X or XX years.
There is also the "risk" that they use this data to develop popular medicines that will actually help your long-term quality of life (if you can afford it).
benced · 9h ago
Privacy advocates, by-and-large, don't engage with the fact that people are often willing to trade their data for value. Surely some people are under-informed and wouldn't if they fully understood the tradeoffs but there are some people who are fully informed and willing to make that tradeoff. The informed-tradeoff-makers opinions' matter exactly as much as the under-informed group's does.
falcor84 · 9h ago
The big "risk" that I see is that this would bring into existence the world of GATTACA, where everyone's genetic information is open, and you might be, e.g. denied a job because they assessed that people with genes similar to yours are likely to do bad in such a role.
moneywoes · 9h ago
any examples of quality of life improvements?
Symmetry · 8h ago
Or even worse than putting a potentially compromised microphone in their bedroom, carry around a microphone in their pocket all day which is also definitely reporting its location to call companies.
EGreg · 7h ago
Is 23andMe no longer going to provide matrilineal mitochondrial DNA analysis and haplogroups?
It is a very valuable service if you’re Jewish, that others like Heritage.com don’t. Where can you get it otherwise?
gchamonlive · 9h ago
I think this isn't the fundamental problem there, that it wasn't clear that your data would be up for sale, but the fact that this is even legal. I think the law should always protect the weaker party in any transaction from misuse of byproducts from that transaction.
Symmetry · 8h ago
"We're going to take your genetic information and use it to develop new drugs" was certainly part of the pitch I was given to get me to join 23andme.
micromacrofoot · 9h ago
Have you been on the internet lately? almost no one cares about their data, most people share their behavior constantly every day to watch 30 second videos.
Why would someone care whether or not it would be sold if they didn't care enough to provide their DNA to an unknown company to begin with?
You're making an argument about a concern that doesn't even exist in the average person's head.
squigz · 10h ago
How could they not? It was inevitable without data protection laws. Even if 23andme didn't go bankrupt, this would have happened as they chased more money - either directly selling the dataset, or "licensing" it
I think people knew this would happen, eventually. The real question is whether they cared. To most people, protection and privacy of data like this is still an abstract concern. I suspect that won't change until a serious data leak happens or something along those lines - although I hope I'm wrong.
micromacrofoot · 9h ago
People don't care so deeply that if you tried to explain it to the average person they'd be bored by the conversation. I one time tried to explain why someone should be concerned about their social security number being leaked in an exploit... and the reaction was "maybe they'll steal the student loans I'll never be able to pay"
squigz · 8h ago
One reason such issues are so abstract to so many people is because they have bigger things to worry about - like paying off debts. Worrying about things that, from their perspective, they can't change and doesn't directly affect them, isn't high on their list of things to do. Casually dismissing it is a way of coping.
burnt-resistor · 5h ago
Because Americans lack livable wages and a reason to hope. The economic royalists have won for now because they've successfully crushed the middle class and pushed people to desperation and belief in delusions rather than courageous, intelligent, honest, productive leaders.
davidcbc · 9h ago
In the same way that people have "known" for decades that smoking causes cancer and smoked anyway, however efforts to keep that knowledge at the forefront of people's minds at the point of consumption by requiring extremely clear messaging on cigarette packaging (in countries other than the US) have been shown to decrease smoking rates.
If these companies were required to put up a big banner before you check out saying "By purchasing this and giving us your data we have the right to sell it to whoever we want" with examples of how the data may be misused by bad actors people may think twice. Not everyone will, but I suspect it would be more effective than you think
SSJPython · 10h ago
No offense, but you have to be an idiot to not even consider the possibility that your data was going to be sold. What do they think they were going to do with the data? Just keep it safe in storage?
davidcbc · 10h ago
Your average person definitely thought that
kjkjadksj · 8h ago
Don’t you specifically consent to use your data for research? That is what another commenter said who used this service.
davidcbc · 7h ago
Does the average user read a consent for research and think it means "we'll sell your data to whomever we choose"?
florbnit · 10h ago
To be fair most people got their results 17$ cheaper than it would have cost them if the data hadn’t been stored to later be sold /s
azan_ · 10h ago
$256 is steal for what they are getting.
hiatus · 9h ago
It's crazy that your own genome is not protected health information. Your doctor can't just sell your info to another doctor when they close their practice.
RandallBrown · 9h ago
They can't sell the info, but they can sell the practice, which is very similar.
Loughla · 8h ago
But I'm getting a doctor in that situation. My doctor is leaving, and it's saving me steps, really, in finding a new doctor.
What do I get when another company buys my genetic information?
OJFord · 8h ago
What were you going to get if they continued operating (practicing) instead of selling?
Loughla · 5h ago
My original doctor? I don't understand the question you asked.
OJFord · 1h ago
Right, in that analogy, but in this case there was nothing further you would get as far as I'm aware, it was a one and done transaction? So the analogy doesn't really hold, because unlike the doctor's practice without the sale you had no expectation of any further service or benefit from it anyway.
epistasis · 6h ago
Your doctor can sell your data at any time into health data markets as long as their privacy policy allows it, and many do. See this article from 2016, for example:
Additionally, 23andMe sold data in the past, quite publicly, to pharma companies to help identify drug targets.
My biggest concern, more than the trading of health data and genomes, is that people are not away its happening. That builds distrust. The actual practice of sharing deidentified health data helps improve outcomes and lower costs, aid discovery, etc. etc. But if people don't know it's happening they may get scared and try to stop it, without fully understanding the risks and benefits and how the risks have been mitigated by current law.
I 23andMe delete my data a while back. I argued with people on online forums about it in two different directions: 1) that 23andMe actually would delete your data so go ahead and request it to be deleted, it's not a futile effort, and 2) it's not super important. I did it mostly because I intensely dislike the behavior of 23andMe leadership, and secondarily because it may have ended up in more nefarious hands. Which leads to 3) the most dangerous use of this data is in bad science from bad polygenic risk scores, which have been a big fad for the past few years, but which are also extremely easy to mess up. Discrimination based on bad models with poor results is just as harmful as discrimination based on good models with adequate results, and some might even say worse.
throwaway173738 · 8h ago
They do put the records in the care of another practice at times. My dentist did that when he retired.
kjkjadksj · 8h ago
It isn’t your genome in question and also people consented towards this.
butlike · 8h ago
Consented to a relationship between 23andMe and the person, not 23andMe and another arbitrary business
usaphp · 10h ago
There was a checkbox about letting 23andme use your dna in research, I wonder if that will be forced to be respected by regeneron after a sale?
dannykwells · 10h ago
This is honestly a fantastic outcome.
Regeneron is among the most science and data focused biopharma and has a long, long history in genetics. They know how critical privacy is and will ensure the data are used to advance human health.
Potentially an even better home for the data than in the company, since now will not have pressure of quarterly reports.
jadbox · 8h ago
On the face of it, this seems like a win-win when you think about Regeneron using this data to make better medicines based on the data.
Ylpertnodi · 7h ago
Oh, now i feel better. They're trustworthy. Got it.
tgv · 10h ago
And it's now worth more to aggressive buyers.
xyst · 10h ago
This was the same sentiment about 23andme many years ago.
If regeneron cared about user privacy, then they would work to make sure consent to use of every piece of data is obtained.
It should be the default to delete any data that has not received a consent upon transfer and users must opt in for regeneron to use it for research or otherwise.
cess11 · 7h ago
If they cared about "privacy" in the sense of data protection rights they wouldn't be based in the US.
hermannj314 · 10h ago
Telling the slave how lucky he is to have been bought by a good slave owner.
Buying and selling humans has never been a good thing. Trading their DNA in the marketplace without consent is just the new evil our generation is too blind to see.
burnt-resistor · 5h ago
One time fee, perpetual services are (mostly) inherently unsustainable.
There should've been an on-going fee to house samples, maintain the website and the labs, and expand the options.
The thing with versions of processes was an expensive way to do it.
Lots of lessons to learn and, hopefully, there will legislation in the EU, US, and elsewhere to regulate personal genetic data as PHI.
rolisz · 8h ago
Are there any "safer" options for doing genetic testing? From a privacy perspective mostly.
mylons · 8h ago
not really. i work in the field. any commercial offering is likely subject to this. every company i've worked for that does personal testing eventually gives their data to someone: other companies, or law enforcement.
it's even worse if one of your siblings or close relatives does this. people have been implicated in crimes due to relatives getting tested. on the one hand that's great they're closing cold cases, but the disaster where this is used incorrectly against you is horrifying.
tantalor · 8h ago
I'd argue that even using the gene database to correctly nab wrongdoers is horrifying.
The ends do not justify the means. The police should not have an easily searchable database of everyone's genetic profile, no matter how they gathered it.
mylons · 8h ago
i agree with you
drdaeman · 7h ago
Does it mean that no company honestly offers a "we sequence your generic material, send you data back, and completely forget the whole affair afterwards, all genetic data wiped on our side with the only copy left being yours - no strings attached" type of service? In a jurisdiction that doesn't require labs to retain anything (so non-US, as US has CLIA). I assume it would cost significantly more than usual subscription/research-subsidized services, of course.
I'm not interested in services of finding relatives or health coach gimmicks, I just want an one-time purchase of a raw data blob with solid personal privacy guarantees. Am I asking for too much?
mylons · 7h ago
as far as i know this is not offered. my assumption is there's little to no demand. if there is a ton of demand, i'd be happy to start this company :)
FL33TW00D · 7h ago
Why isn't there a company that just "wraps" Illumina. Zero partners minus the Illumina machine. Seems obvious.
mylons · 7h ago
what do you mean? i think you more or less described every personal genetics testing company as they start out. they use the illumina machine to do the testing and develop custom assays with said machine
FL33TW00D · 7h ago
"every company i've worked for that does personal testing eventually gives their data to someone: other companies, or law enforcement."
Why isn't there a privacy focused company that just doesn't do this.
mylons · 6h ago
as far as i know there just isn't demand for one's own data like this. people have kinda tried, there's some weird web3 offerings that allegedly do this so you can monetize your data but afaik nobody uses that.
i mentioned in an earlier comment i'd be happy to start this company if there were that kinda demand. it'd cost you around $1000 USD to get this done and get a hard drive mailed to you with raw data (fastq files).
EDIT: it probably would be cool if this kind of thing existed so consumers could shop their analysis around. it might actually open up some consumer bioinformatics startups
So I have to assume my DNA data was illegally sold by 23andme to Regeneron.
In return, I just asked Regeneron to provide me a copy of sequenced DNA data from their CEO and founder. As Regeneron seems to be cool with buying and selling of DNA data they should not have a problem to share their leadership's DNA.
epistasis · 10h ago
What do you mean by "illegal"?
JonChesterfield · 7h ago
Need to offer $17 for it
psunavy03 · 10h ago
So I have to assume you didn't read the fine print when you clicked "Accept" or whatever . . .
Genetic information is valuable for finding drug targets, but it's generally a poor predictor of disease, except in case of rare monogenic disorders. With the advent of large population studies such as UK Biobank, which include lots of epigenetic information as well, I am not sure if one can get much extra value from 23andme's dataset in a pharmaceutical context.
Does it though? This is just a temporary stop gap, the data will continue to move and be exchanged, and this company will eventually collapse or be bought out as well.
Everybody made fun of Elon buying twitter but the spin-off from it (X.ai) was valued enough to buy the original company.
We'll need to wait a bunch of more years to see if the 23andme concerns were unfounded.
Crucial X.ai bought out X with a minority of stock. X.ai as in the thing spun out from X to do ai using X's data. Fidelity seems to value X.ai enough to be happy to have gotten more shares of it using the X shares.
I swear if OpenAI happened like 1 year prior to the twitter sale then everybody would have a different opinion about 44 Billion being the correct price for twitter.
Life, uh, really does find a way!
People who got bamboozled into paying for this junk service shouldn’t have their DNA data treated as some commodity that can be traded like a stock.
The sale of this data should be treated as PII and "transfers of ownership" should not be implied. The default for every user should be to delete the data upon sale of company and provide a way for users to opt in to the transfer.
Users should be incentivized and trust (if any at this point) needs to be rebuilt with this new company, not implied.
That means the only insurer who could afford the risk is the US government.
This is a feature not a bug.
No, it means that insurance will be more accurately priced since risk will be able to be estimated better.
>it's eugenics with extra steps
Which would lead to a healthier populace.
Grandpa sewed some oats before he got with your grandma? That's his business, not his relatives'.
It's hard to argue that a criminal's rights are being violated if he's found out through a DNA database, but the privacy ramifications overall of them are really unfortunate. The world is moving to a place where your biometrics are on the record, and the government can use them to hunt you down (see also, Global Entry, fingerprinting people who work with kids, Real ID, speed cameras, etc.).
I really don't like that we're being surveilled by default now. It's even creepier when there's now an administration in power that has no respect for prior norms and a long list of perceived enemies.
I like that you have to be Live Scanned to be an EMT or work with children. You aren't forced to do those jobs and they do require a higher level of trust. The FBI opened its fingerprint database a century ago now, and it's been used for a lot of good and I'm sure some bad. But more good?
I remember watching GATTACA and thinking how depressing it was in 1997. Its been less than 30 years and we're already here.
Completely agree. The usual social media esque "it's a free service so you are the product" arguments don't apply here, people paid 23andme for genetic testing.
The good news is:
>"Regeneron pledged to comply with 23andMe’s privacy policy, which allows customers to have their personal information deleted upon request."
There needs to me a massive campaign to convince every single customer to file a data deletion request.
This is important: don't assume that because you're paying for a service that your personal data isn't still being mined. It doesn't matter if you fairly, over or under pay for a service. There's nothing illegal or uncommon about that.
As noted therein, you need to request a download well before you actually delete your account, since the former requires to batch work to complete and the latter will cancel any in-progress requests.
Right now, health "insurance" is transparently a subsidy scheme where the healthy subsidize the unhealthy. I wonder, if "insurance" companies were allowed to operate as actual actuarial net-neutral-EV honest-to-god insurance companies again, which political coalition would get net savings? I could see it going either way. Conceivably, the efficiency gains from having actual insurance again would result in net-positive EV for both sides.
This is because HIPAA isn't designed to protect your privacy or your data but it's designed to protect the providers and insurance carriers. It's covering their legal asses and maximizing difficulty for everyone else to access information about what they've done to you. It's about protecting their investment.
If HIPAA were designed to protect your privacy, then HIPAA would apply to your data or you personally, rather than the narrow scope of regulated entities.
Some juicy data they sold there.
Now that being said, when it was launched, 23andme was the only way to have very affordable and high-quality and reliable DNA scans.
This data is very useful to improve your quality of life today using tools like Promethease. This to be weighted, against a risk that "potentially" someone may use maliciously in X or XX years.
There is also the "risk" that they use this data to develop popular medicines that will actually help your long-term quality of life (if you can afford it).
It is a very valuable service if you’re Jewish, that others like Heritage.com don’t. Where can you get it otherwise?
Why would someone care whether or not it would be sold if they didn't care enough to provide their DNA to an unknown company to begin with?
You're making an argument about a concern that doesn't even exist in the average person's head.
I think people knew this would happen, eventually. The real question is whether they cared. To most people, protection and privacy of data like this is still an abstract concern. I suspect that won't change until a serious data leak happens or something along those lines - although I hope I'm wrong.
If these companies were required to put up a big banner before you check out saying "By purchasing this and giving us your data we have the right to sell it to whoever we want" with examples of how the data may be misused by bad actors people may think twice. Not everyone will, but I suspect it would be more effective than you think
What do I get when another company buys my genetic information?
https://www.scientificamerican.com/article/how-data-brokers-...
Optum Health and IQVIA facilitate this.
Additionally, 23andMe sold data in the past, quite publicly, to pharma companies to help identify drug targets.
My biggest concern, more than the trading of health data and genomes, is that people are not away its happening. That builds distrust. The actual practice of sharing deidentified health data helps improve outcomes and lower costs, aid discovery, etc. etc. But if people don't know it's happening they may get scared and try to stop it, without fully understanding the risks and benefits and how the risks have been mitigated by current law.
I 23andMe delete my data a while back. I argued with people on online forums about it in two different directions: 1) that 23andMe actually would delete your data so go ahead and request it to be deleted, it's not a futile effort, and 2) it's not super important. I did it mostly because I intensely dislike the behavior of 23andMe leadership, and secondarily because it may have ended up in more nefarious hands. Which leads to 3) the most dangerous use of this data is in bad science from bad polygenic risk scores, which have been a big fad for the past few years, but which are also extremely easy to mess up. Discrimination based on bad models with poor results is just as harmful as discrimination based on good models with adequate results, and some might even say worse.
Regeneron is among the most science and data focused biopharma and has a long, long history in genetics. They know how critical privacy is and will ensure the data are used to advance human health.
Potentially an even better home for the data than in the company, since now will not have pressure of quarterly reports.
If regeneron cared about user privacy, then they would work to make sure consent to use of every piece of data is obtained.
It should be the default to delete any data that has not received a consent upon transfer and users must opt in for regeneron to use it for research or otherwise.
Buying and selling humans has never been a good thing. Trading their DNA in the marketplace without consent is just the new evil our generation is too blind to see.
There should've been an on-going fee to house samples, maintain the website and the labs, and expand the options.
The thing with versions of processes was an expensive way to do it.
Lots of lessons to learn and, hopefully, there will legislation in the EU, US, and elsewhere to regulate personal genetic data as PHI.
it's even worse if one of your siblings or close relatives does this. people have been implicated in crimes due to relatives getting tested. on the one hand that's great they're closing cold cases, but the disaster where this is used incorrectly against you is horrifying.
The ends do not justify the means. The police should not have an easily searchable database of everyone's genetic profile, no matter how they gathered it.
I'm not interested in services of finding relatives or health coach gimmicks, I just want an one-time purchase of a raw data blob with solid personal privacy guarantees. Am I asking for too much?
Why isn't there a privacy focused company that just doesn't do this.
i mentioned in an earlier comment i'd be happy to start this company if there were that kinda demand. it'd cost you around $1000 USD to get this done and get a hard drive mailed to you with raw data (fastq files).
EDIT: it probably would be cool if this kind of thing existed so consumers could shop their analysis around. it might actually open up some consumer bioinformatics startups
In return, I just asked Regeneron to provide me a copy of sequenced DNA data from their CEO and founder. As Regeneron seems to be cool with buying and selling of DNA data they should not have a problem to share their leadership's DNA.