See https://news.ycombinator.com/reply?id=21815295&goto=item%3Fi...
Is there something specifically missing from that? it seems like you're suggesting they are doing somethign which is not covered here, or they're trying to be "sneaky", but I don't think that's the case. They have always made it fairly clear what the long game is, and "collect genetic information and share it with legitimate researchers to enable drug discovery" was a major part of it.
I see a lot of folks suggesting 23&Me is being sneaky, or underhanded, or going out of its way to cloak these sorts of exchanges. I do not agree with those interpretations.
Note: I am generally sympathetic to the idea of widely sharing genomic information and believe that good consent forms are transparent. This form is closer to what I'd like to see from a wider range of less ethical organizations.
> Giving consent by checking the appropriate box below means that you agree to let 23andMe researchers use your Genetic & Self-Reported Information for 23andMe Research, as described above.
And they have a reasonable policy if you decide you want to opt out:
> At any time, you may choose to change your consent status to either take part in 23andMe Research or to withdraw all or some of your Genetic & Self-Reported Information from 23andMe Research. Your consent status is located in the 23andMe "Settings" page. ...
Choosing not to give consent or withdrawing from 23andMe Research will not affect your access to your Genetic Information or to the Personal Genome Service.
---
6. Do I have any alternatives? Can I withdraw from this study?
Your alternative is not to participate in the 23andMe Research study. If you choose not to give consent for 23andMe Research, your Genetic & Self-Reported Information may still be used for other purposes, as described in our Privacy Statement. If you do give consent to participate in this study, you may choose not to take 23andMe Research surveys or use other 23andMe Research features.
At any time, you may choose to change your consent status to either take part in 23andMe Research or to withdraw all or some of your Genetic & Self-Reported Information from 23andMe Research. Your consent status is located in the 23andMe "Settings" page (if you experience problems changing your consent status, write to the Human Protections Administrator at [email protected]). If you withdraw all or some of your Genetic & Self-Reported Information, 23andMe will prevent that information from being used in new 23andMe Research initiated after 30 days from receipt of your request (it may take up to 30 days to withdraw your information after you withdraw your consent). Any research on your data that has been performed or published prior to this date will not be reversed, undone, or withdrawn.
Choosing not to give consent or withdrawing from 23andMe Research will not affect your access to your Genetic Information or to the Personal Genome Service.
You may also discontinue participation by closing your Personal Genome Service account, as described in the Terms of Service. Requests for account closure can be made directly within your Account Settings.
> Your alternative is not to participate in the 23andMe Research study. If you choose not to give consent for 23andMe Research, your Genetic & Self-Reported Information may still be used for other purposes, as described in our Privacy Statement
Seems to imply that if you do not give your consent for whatever "23andMe Research" is, then they will still use the data for other purposes. So in other words if you do not opt in they will still use they data. That's not a normal definition of "opt in".
However, I don't know what is in the privacy statement. What are they able to do with the data if you don't opt-in?
Not really. It's more like they have an army of lawyers paid so they can claim GDPR compliance, and delay/suppress or negotiate deals for years (if not decades) anything that comes up to say their not.
That being said, apparently there are already ongoing legal cases around GDPR complaints for MS. No idea how those will end up.
That is not how consent works.
If I am selling you an apple, but thereby you give me consent to use its genetics for research, and without that we do not do business, then there is nothing optional about it; no opt-in, no opt-out.
Opt-in is when the flag is disabled by default, and you can enable it if you want to, and use the product regardless of your choice.
Opt-out is when the flag is enabled by default, and you can disable it if you want to, and use the product regardless of your choice.
Opt-in is when I buy your apple.
Opt-out is when I don't buy your apple.
That you can decide to not go for the entire package is not what we disagree on (apart from above, I suppose).
What we were discussing is that the consent is optional; it is not in any of these examples. It is part of the package deal; then you don't call it opt-in or opt-out, as that allows you to opt-in or opt-out of something which is otherwise not in your direct advantage, but is in the other party's advantage.
>What we were discussing is that the consent is optional
Yes the consent is optional, in the sense you are allowed to opt-out by not buying the apple or buying it from someone else or produce it yourself.
It is up to us to elect those who represent us in our governments.
For some superficial rule, I may only punish the person who has been found guilty by also punishing the person who has not been found guilty.
Can you explain to me how this is fair?
Here is where you and I differ. You find it OK when a party (e.g. business) uses your private data to sell or otherwise use for their benefit. I believe such personal data is ultimately my say. And I believe only informed opt-in (optional, not part of a package deal ie. how GDPR works) is a fair way to deal with such situation.
Yes, it is. I tell you all the terms of the deal in advance, and you choose to accept it or not. If you don't want my apples, go to the next guy.
GSK is not a "parent company". It is a minor investor. This also doesn't give them some ability to demand access.
> In the United Kingdom, it is generally held that an organisation holding a 'controlling stake' in a company (a holding of over 51% of the stock) is in effect the de facto parent company of the firm, having overriding material influence over the held company's operations, even if no formal full takeover has been enacted.
HINTS: GSK (UK based) is not one of them.
https://www.gsk.com/media/5349/annual-report-2018.pdf
> 23andMe in which the Group holds 14.5%.
Is there not a difference between using your data for research...and selling it to a pharmaceutical company attempting to develop a commercial drug?
Seems there was a misrepresentation in giving up their DNA, and those people should have rights to any drugs developed as a result.
0. https://www.drugcostfacts.org/public-vs-private-drug-funding
But why talk about executive pay and not marketing? Research clearly takes a backseat to marketing at these shops:
https://www.washingtonpost.com/news/wonk/wp/2015/02/11/big-p...
As for who pays for research, you're right that pharma companies now pay for over half of US biomed research, something that's been true for about a decade. I don't know how that "5 times" figure was calculated, but my figures show the government currently finances about 1/3 of biomed research, including almost all basic research.
Of course, pharma benefits from that research, too, and looking only at spends understates the value of those contributions. One recent study found that
"NIH funding contributed to published research associated with every one of the 210 new drugs approved by the Food and Drug Administration from 2010–2016."
What does big pharma reinvesting more of its revenue back into R&D have anything to do with obtaining peoples DNA through any means but directly from the owners of the DNA?
Big Pharma also spends more in lobbying efforts than any other industry...in fact double the next industry (tech)...in fact they spend in lobbying what the #2 and #3 industries (tech and insurance) spend together. Were you aware big pharma lobbying goes towards R&D tax credits for themselves?
No...? Precluding companies from coming up with cures for diseases based on researching this data seems to defeat one of the major points of medical research.
Since when is privacy violations a major point of medical research? Did these pharma companies get your DNA through a 3rd party without your knowledge?
I'll bet you a dollar that neither crmrc114 nor 23&me asked /all/ the stakeholders in this particular transaction for consent.
Wanting to accelerate the development of novel drugs and therapies to treat disease is great. But rather than giving a private company carte blanche to share data with third parties trusting (hoping?) that the outcome will benefit humanity, it would be better first to establish a sensible regulatory framework around genetic information and its uses by private companies and the governnment.
Unless somehow it were possible to gain a monopoly on curing people, which is plausible but fundamentally not the responsibility of the researchers.
The new common rule provides for just such a thing called broad consent, which requires tracking patient consent in a fine-grained and revokable way. Interestingly, about the time it came into effect, I heard about a new start-up supported by George Church, called Nebula, which provides just such a consent service using a blockchain.
So, the regulatory framework exists, and a product to implement that is on the market. And this stuff was in discussion for better part of a decade, so it's not like this just snuck up on people.
I have a medical issue with no cure and so does my dad. My mother died from cancer a few years ago. I could care less if they make a profit or not so long as it improves my quality of life and that of my father.
For much of my mother's treatment, both the first time she got cancer (and beat it) and the second time (when she did not), she was getting treatment that only existed in the US. Why? Because it's profitable here.
I myself take an orphan drug only available in the US and only developed because of changes like the Orphan Drug Act of 1983.
Altruism is fine and good, but profit-seeking is more effective and expedient.
It doesn't matter if you can afford everything in the world if the thing you need is never developed in the first place.
Some of the treatments me and my family have had were not available in Europe, Canada and other universal healthcare countries at any price. I would have probably lost almost two decades of time that I got to spend with my mother because she got treatment in the US the first time she got cancer. She was British and at the time the NHS had the 2nd worst success rates for cancer of all OECD countries and the US had the highest success rates.
There are dangers if it's misused, sure, but the benefits for literally everyone on the planet dwarfs even the worst, least-likely dangers, IMO.
If they want to market their services as "donate your DNA for research" and then, as a side-note, we'll send you back some fun details about you... Fine. But right now, they sell it as a way to know about yourself, your family, genes, etc. Then millions of people wake up to the news to find out that their DNA was handed over to a pharma company.
If they feel fooled for whatever reason (I assume because that research is being done by another company instead of 23andme directly) and are now claiming they've lost some semblance of privacy over deidentified data they already handed over, that pales in comparison to lifesaving cures that are enabled and made more likely by sharing such data.
Quality of life for everyone > pedantics of what exact things you're opting into when you give your DNA to a genetic research company that dedicates a whole page in the signup flow to using your DNA for lifesaving research and cures.
Or when signing up for health insurance a policy chain down the road. At that point the new treatment better be cheap enough to pay out of pocket...
But seriously, how can you in good conscious claim this all being willingly when it's very nature shares info about other people as well. This feels like unaware people giving Facebook access to their phone book all over again, thus giving away all kinds of info about me. No, I don't want FB creating shadow profiles about me and certainly wasn't asked.
Can we please find a way to not create piles of data about third parties? Since, if history has shown one thing, them being used against me is just a matter of time. Or, at least have in place strong protections by e.g. regulations?
But more generally, the arguments being raised here regarding risk of abuse of the data are predicated on tyrannical or illegal activities occurring. Instead of denying ourselves the benefits of cures derived from data such as this, why can we not build a society where the data is not abused?
Human pro-social activity is a very powerful thing. If there are risks in unifying data, we should work to build a society that stewards those risks responsibly, we shouldn't try to cut ourselves off and hope the life of a data hermit serves us better.
I mean, what other technologies should we deny ourselves? A tyrant can use tanks and troop transports to wage war on their citizens. Should we tear up the roads lest they be abused by tyranny?
This doesn't preclude drusepth from using their property in an assholish way.
>This would be similar to arguing that if I had an identical twin, I need my twin's consent to donate a photo of myself to a facial recognition library.
No, it'd just mean that you're an asshole if you do.
>But more generally, the arguments being raised here regarding risk of abuse of the data are predicated on tyrannical or illegal activities occurring. Instead of denying ourselves the benefits of cures derived from data such as this, why can we not build a society where the data is not abused?
Time scale. Societies come and go. To the extent that we don't have tyrannical ones they're not exactly long lived. Once you've given the data and power to the non-tyrannical government, you're screwed if tyranny ever swings around again. That's a huge gamble to make off of nothing given the history of all world governments. Seems far more likely they'll all be tyrannical again at some point than never again ever.
>I mean, what other technologies should we deny ourselves?
All of them. Technology is a perversion of our innate condition. A result of mate signalling gone off the rails.
>A tyrant can use tanks and troop transports to wage war on their citizens. Should we tear up the roads lest they be abused by tyranny?
Of course!
As you have been overly fond of using tu quoque as a rhetorical device throughout this thread ─ in your earlier response, you trivialised the exercise of willingly handing-over the most precious of all and the pinnacle of personal data, whilst paying for the privilege, and compared it to just another transaction on Amazon: what about the fact, that almost all tyrants are enabled and empowered by somebody (usually the govt.); it would be conducive to conclude based upon your fervour, that you are equally complicit in creating yet another tyrannical corporation, which shares your disdain for privacy?
If you seek an answer to that question, you don't have to venture very far from Google, who birthed this creation.
"Begs the question" means your argument presupposed the truth of this part of the statement instead of supporting it.
That is not the same thing as selling data to third-parties. Especially considering that 23andMe asks users questions and then shows results based on correlations, it's too easy for users to understand "opting in for health research" as research being done by 23andMe and not by a third-party.
I am all for finding cures but the unwitting public needs to be protected. Most people assume there is no way a legit company would do something terribly evil.
Are you kidding? Cynicism is endemic in the U.S. today; likewise for anti-corporatism. You can see it in the comments.
Personally, I'm in the same boat as the OP: I was a very early 23&Me customer and persuaded many family members to also participate, with the knowledge that 23&Me would monetize the data through research. They never claimed to be a non-profit. They were relatively transparent about their opt-in and opt-out policies, though after the FDA debacle their "simplified" website became significantly more complex and opaque. I also participated in a Kaiser Permanente whole genome sequencing research program, donated my blood samples, and then never heard anything ever again. I hope they're doing good science, especially because donating my whole genome is significantly more invasive from a privacy perspective than a few thousand SNPs.
If we sat around and waited for the perfect environment that addressed everybody's concerns, we'll be waiting forever. In the meantime, the less selfish among us are putting our own privacy at risk for the greater good. And the more of us that do that, the more political pressure there will be to sustain and expand existing legal protections prohibiting discrimination.
Not only am I glad 23&Me is selling the data (and this isn't the first time), I hope that overtime they'll have enough income that they can start sharing much of their data for free with schools and labs around the world. The latter may never come to pass, but I can't let perfection be the enemy of the good. And I won't let fear and uncertainty turn me into a perpetual privacy victim.
EDIT: I just received an e-mail from KP regarding their research project. It's the first I've noticed, but judging by my e-mail log they seem to have sent a handful over the past several years which I apparently deleted as spam. Here's the project website: https://researchbank.kaiserpermanente.org/
> If we sat around and waited for the perfect environment that addressed everybody's concerns, we'll be waiting forever.
Forever sounds better than the alternative. You seem so eager to sacrifice so much on the altar of hope based on wishful thinking that this data will not be abused. The #1 rule in technology should be "if it can be abused,it will be abused" there are no exceptions to this.
Like another commenter suggested,perhaps your current place in society has you free from such fears but rest assured that in times of war,turmoil or civil conflict or when spy agencies and the military want to gain an operational advantage using this tech/data It will be used against you. Your sick and disabled family members would have been subject to eugenics. It's not difficult to imagine any social group finding themselves in a position of weakness against a hostile power,group or individual. Look at all the horrible experiments the CIA performed, euegenics by usgov/army, the horrible things they did in Iraq and cia detention facilities,etc... the typical situation imho will be a cooperation between evil government and these companies where the companies abuse the data/tech with impunity in exchange for sharing access with their gov protectors.
Just take a peek at all the inhumanity and amorality of the pharmaceutical industry's greedy price hikes/rigging. Do you still think these are trustworthy people who won't take every opportunity to profit and say "sorry" when they get caught? (Or just bribe politicians and ignore the whole thing).
I mean how naive and deluded are you? I still don't get you and op's state of mind here. Horrible abuses will happen at large scales, guaranteed (not even speculating)!
Your actions are actually more selfish. You have an opinion where you don't care about other people's opinion, so that's selfish.
For me this is the simulation that gives me pause. I also guess that research might not just happen on itself, but can't help to wonder what better ways they could be to avoid getting cornered at the end.
Is that preferable to an alternative where no company can bid on such data, and therefore a cure either never exists or is delayed N years (where N is probably significant)?
Consider also that all medicine often starts prohibitively expensive to offset R&D, and predictably lowers in cost over time.
Sadly because of the state of America, your insurance company once it gets your genetic data is going to make you sorely regret it.
And it's unlikely it would be passed as a law, because (currently) most people favor privacy for their genomic information.
Personally, I can see the value in allowing health insurance to access genomic information. Assuming it truly correlates with health outcomes, the data would be valuable in accurately personalizing contracts. I believe other indicators are already used.
There can easily be a hole punched in the law with some weasel words in an omnibus bill that nobody pays attention to until 5 years later and we are hearing about the problems in a 60 minutes exclusive.
I was refuting the parent’s point:
“any change like that would be major national news, debated extensively in Congress, and then, if turned into a new law, would roll out over years.
Which is manifestly false for the reasons I outlined.
Are you suggesting otherwise?
You can't insert major changes to health laws in omnibus spending bills.
Almost nobody complained, there was no meaningful mainstream coverage, and most people don’t even know there was a change even now.
And you don’t need to insert a major change to punch a hole in the law. A small exception will do it.
When I bought my term life insurance policy they took a blood sample, as they have for decades. I don't know if they did any genetic screening, but if they didn't I presume it's just because the cost+benefit wasn't there yet. Considering that I could do whole genome sequencing today for a couple thousand dollars and game the system, that bodes well for the future as it suggests the viability of tiered screening and risk management strategies that smooth out the costs for most people in the face of increasing self-selection behaviors as genome sequencing costs decline for insurer and insured.
BTW, regardless of whether a life insurer does genetic screening, if you procure a policy knowing of a substantial risk of genetic illness without disclosing it that would violate the terms of most policies and may even rise to the level of insurance fraud.[1] We may see laws limiting the types of affirmative screening that can be done by insurers, but I could never see a law limiting such contractual terms and general background rules as it would certainly destroy the market for life insurance.
[1] Thus, if you want both life or disability insurance and genetic tests, the legally and ethically correct thing to do is buy the policy first and then do the genetic tests afterwards. It makes sense to buy life and disability insurance at a relatively young age, anyhow, like in your late twenties or early thirties where your income has [hopefully] already risen to a level where you can buy a multi-million dollar policy without a penalty--from a risk management perspective insurers can only offer the best rates when there's a correspondence between the policy amount and existing, proven income. By contrast, it makes less sense to do genetic testing until you have reason to, like in middle age. That's fortuitous and one reason why we should be less concerned about the effect of voluntary genetic testing and disclosure rules regarding life insurance. (Obviously affirmative genetic screening is a different problem.)
For example, advertise only to healthy people?
I think about how new privacy laws prohibit "selling" of advertising data, but there's nothing about just "sharing".
Meanwhile I submitted my DNA to ancestry and learned interesting things about my family.
Anything may be used for good or evil.
Genotyping is not full sequencing. The files produced are not that large. According to this press release volume pricing is below $40 / sample. https://www.businesswire.com/news/home/20160616005665/en/Ill...
If only scientists focused their research on Medical Cannabis which is time and again showing positive results on plenty of patients afflicted with Alzheimer's and Parkinson's. My grandpa had Parkinson's too. I wish I or my family knew of Medical Cannabis and the positive effects of CBD back then. It makes me angry that this naturally occurring plant was banned by the CIA and India followed suit when Cannabis (called Vijaya in Sanskrit) was used in Ayurveda for thousands of years. We discarded a medicine that was working perfectly fine for chemicals made artificially by Big Pharma. Now people have no choice and have to resort to going for allopathy when an alternative natural medicine exists but would invite prison time if you use it. No one would dare to break the law. And when accompanied by social stigma in using it you have this fine concoction of guilt for breaking the law and anger, sadness at the sheer ignorance of society.
The first steps are being taken today with similar systems for automated drug discovery, and the same amount of effort should be thrown into genetic research.
Not only do I want my DNA in a database making up a genetic version of DigitalCorpora.org, freely available to researchers (commercial and non-profit alike), I also want it available to law enforcement so that when a familial match pops up for a sample in a rape kit or crime scene they can catch the person.
If a critical mass of genetic information could be gathered and sufficient computing power thrown at it, live-saving discoveries could become so routine they aren't even reported on anymore.
I am excited, too.
Funny we don't see any subpoenas here while a private company openly trumphs monetizing your DNA data, but threaten the govt 'process' and whamo! lawyers out the wazoo
amp.theatlantic.com/amp/article/408709/
Or otherwise criminalize your existence https://en.wikipedia.org/wiki/One-drop_rule
Sure it is. Definitely the 'hosting and storage' part, which they wouldn't need to do if you weren't the product.
Though there are issues with privacy, I think we should remember that there's a lot of good that can come with this if cures are made available.
It's a really weird route that capitalism has forged on this one. It'd be nice to see public agencies get their act together on these kinds of things. Imagine if a university were able to do this - and all the data were made public to any researcher, properly anonymised.
What?
I've used 23andme and it's VERY clear when you choose to share or not share your DNA.
https://time.com/5349896/23andme-glaxo-smith-kline/
While 23andMe has technically adhered to the original terms of service, they've been sharing your data without your consent with their new parent firms like pharma giant GSK (the same one described in this article) which purchased partial ownership of the company and therefore ownership of the data. You see, giving data to your parent firm is not technically giving data to a third party. This was the business model all along. The 'customers' were the product, and the real customers were pharmaco.
Getting the products (you) to pay for the cost of their own sequencing so the data is effectively free was a stroke of genius. Not only are you giving away incredibly valuable data about yourself only a tiny fraction of which is returned back to you in the form of a report, you're paying for the cost to collect it. It's brilliant.
You've been duped by the dupe that everyone saw coming.
> A 23andMe spokesperson told TIME that data privacy is a “top priority” for the company, emphasizing that customer data isn’t used in research without consent, and that GlaxoSmithKline will only receive “summary statistics from analyses 23andMe conducts so that no single individual can be identified.”
Also, if I buy some shares in Amazon I don't get have all their client data.
There are obvious loopholes to the statement “no single individual can be identified”.
https://www.gsk.com/media/5349/annual-report-2018.pdf
> 23andMe in which the Group holds 14.5%.
You can also find a list of subsidiaries of GSK in there and you will note that 23andMe is not listed among them.
If a publicly traded-company has more than 5% of outstanding shares owned by a single entity, they have to file an SEC Form 13D. This is a typical cut-off to indicate an activist investor [2]. Far less than the 14.5% GSK owns. Without knowing who owns the other 85.5% of 23andMe (or visibility into their board and voting structure), we have no idea who controls the company.
You would need to spend about $44 billion to own 5%, or 24.8 million shares, of Amazon. I'm still not clear on how GSK's purchase of 14.5% of 23andMe along with the exclusive agreement that came with it is the same as buying a single share of Amazon stock.
[1] https://www.cnbc.com/2018/07/24/glaxosmithkline-23andme-team...
Buying 14.5% of a company does not come with an automatic collaboration agreement nor would a collaboration agreement come with 14.5% of a company's stock unless there is specific terms for that in some contract which establishes both. And there very well may have been - but both a collaboration agreement and 14.5% ownership can exists without such a contract.
> I'm still not clear on how GSK's purchase of 14.5% of 23andMe along with the exclusive agreement that came with it is the same as buying a single share of Amazon stock.
The argument that was made and that I was responding to was that GSK is 23andMe's parent firm and therefore not legally a 3rd party ... and I'm not sure how I much clearer I can say a shareholder is a shareholder.
If you want to argue that the exclusive collaboration agreement (which is not the same thing as 14.5% ownership) somehow defeats 23andMe's privacy policy then please, argue for it. Maybe it does - but you have not done anything more than allude to it doing so.
> You would need to spend about $44 billion to own 5%, or 24.8 million shares, of Amazon.
And spending that much will not entitle me to an exclusive collaboration agreement with Amazon nor will it make me somehow not a 3rd party of Amazon and therefore allow Amazon to give me all their client data without violating any privacy policies as the person I was responding to claimed.
> Without knowing who owns the other 85.5% of 23andMe (or visibility into their board and voting structure), we have no idea who controls the company.
We don't - but board members and owners are not the same as parent companies and I don't see how that somehow defeats their privacy policy either but if you think it can please clarify.
The point is that GSK wouldn't have invested $300 million without the exclusive collaboration agreement. That is why it's different than buying a publicly traded stock. GSK is not just a random shareholder, they are a significant owner (may even have board seats) with an exclusive collaboration agreement. You are splitting those things up to make your argument, but they are linked together.
Not only that, this is one of the benevolent aspects of 23&Me that people saw coming. It's only a matter of time before this information trickles to insurance companies.
I'm sure GP's children will love them for selling out their data to future employers and insurers.
In general trying to keep DNA secret to prevent discrimination is a losing game, a better strategy is preventing discrimination itself, which we already have to do for DNA variations that have visible manifestation. Moreover if the number of people who need protection from discrimination increases, we'll get better at preventing it, which would be useful for the people who are being discriminated now.
I really hope that would be illegal here in the EU. It being physically possible (or even easy) doesn't make it okay. Not having the dataset easily available is one safety layer to prevent discrimination. No, it sadly doesn't help in all cases. Its unlikely there will ever be something that can, unless maybe you believe in perfectly implemented government policy reeducating us or controlling our behavior.
If we knew the ways vaccination programs would be abused, should we have refrained from inoculating so much of the world against polio?
https://www.23andme.com/about/consent/
"Which of my personal information is used for research?"
"Your genetic data and any other personal information you enter into the website, except for your Registration Information (name, contact information, and credit card information), may be analyzed in the research."
It really seems people are complaining because 23andme didn't demand they sign a consent for something they had already explicitly signed a consent to. I, for one, assumed large third-party pharmaceutical companies would have access to the data when I volunteered it. Is there significant risk people misunderstood that? How?
DEF CON 25 - John Sotos
"Genetic Diseases to Guide Digital Hacks of the Human Genome"
https://en.m.wikipedia.org/wiki/Genetic_Information_Nondiscr...
The health insurer doesn't need the genome. It just needs a number from 1 to 10 from a 'de-identified' source to multiply their scores by.
ACA plan premiums can only be set based on 5 factors: age, location, tobacco use, individual vs. family enrollment, and plan.
Insurance is effective at protecting people from uncertain financial risks, but the demands of the public have gradually changed the function of health insurance to include many things outside of that.
The question was never "what functions do insurance companies do efficiently?", the question has always been "what health benefits do people deserve?". Unfortunately, these questions have different answers.
[1] https://www.npr.org/sections/health-shots/2018/08/07/6360262...
It's incredibly difficult to truly de-identify data and it's incredibly easy to re-identify it. Making data truly anonymous usually also neuters the data for any kind of predictive models.
23andMe is selling either straight up raw data (which is totally allowed under the investment terms) or tightly grouped 'summary' data which can be trivially re-identified. If they were selling actually anonymous data it would be worth nothing because it would yield no predictions.
Disclaimer: I work in ML/predictive analytics. 'anonymous data' is a marketing term for trivially reidentifiable data. If the data is truly anonymous then its predictive power tends towards 0 as does its market price. You don't think GSK dropped 300 mil on mostly useless data do you?
Trying to keep genetic identity anonymous is security through obscurity. You have shed thousands of skin cells in the time it took for you to read this. If people want your DNA it's trivial to collect -- and will only get easier and more common.
A better use of our time is to address the ramifications of public DNA and prevent it from being misused.
Now compare the cost of hacking into a database to the cost of obtaining millions of genomes by physically taking genetic material and then sequencing it. Then consider that your DNA is yours for the rest of your life.
Simply because data can be obtained by some means does not make protecting that data useless.
As the value of DNA increases, people will collect it. Restaurants, washrooms, your employer, airlines, Uber etc. all could have trivially easy access to your DNA if they choose to.
Just because there is 'trivial' access to certain attributes of people doesn't mean that it's legal to capture those attributes, and even if you do capture them, they're worthless on the legal market. E.g. see SF ban on facial recognition.
And that's only if such legal barriers are even constructed which I'm not sure they will be. Look how the privacy battle has turned out thus far.
Why, after the consistent abuses and lack of accountability across the corporate sphere, would you place any faith in a business's claim that they're just leaving what probably already amounts to billions of dollars of value on the table when there is effectively no penalty for covertly extracting said value at the cost of customer privacy?
Why, after a decade+ of security breaches and poor data handling practices, would you trust a financially motivated, publicly traded company to properly anonimize data?
[1] https://www.telegraph.co.uk/news/2018/04/27/golden-state-kil...
[2] https://www.latimes.com/california/story/2019-11-24/law-enfo...
[3] https://www.usatoday.com/story/tech/nation-now/2018/04/27/an...
https://www.nytimes.com/2019/07/23/health/data-privacy-prote...
I'm going to have to investigate this more thoroughly. If it's true, then I'll delete my data at 23&me (and hope that data deletion actually does what it says).
I'm certainly not doing anything to cure that disease. Strict privacy advocates aren't doing something to cure that disease (I guess they might be, but how would I know, they don't talk about themselves much ;) ).
I value a cure for Parkinson's more than I value my privacy. If selling the DNA I provided as part of a research dataset (that I provided without knowing who would be doing the research, but knowing it'd be someone because that's how research works) cures Parkinson's, I'm on board.
And that's the best case scenario, the worst case scenario is that your data is used to increase your insurance and healthcare rates.
Moreover, it normalises crappy corporate behaviour.
Novartis recently won approval for a cure to a rare genetic disorder, priced at two million dollars: https://www.reuters.com/article/us-novartis-genetherapy/nova...
(b) To address that issue, I vote for politicians who advocate for radically restructuring how healthcare is paid for in the US to minimize incentives to gouge unlucky individuals
There's something so purely dystopian about paying a company to collect our genomic data, which then helps to create medical breakthroughs that none of us will be able to afford.
This is why it's so important that companies refrain from selling our genomes to biotech companies.
If the treatment ends up costing $100k, the genetic info you provided resulted in a discount from infinite dollars to an actual finite amount.
That's a pretty big discount.
I'm shocked that it needs to be spelled out on HN, but companies like 23andMe are the epitome of 'you are the product'.
I don't believe myself to have been duped. I've made concessions based on priorities. Would I prefer this work be done, publicly funded, by the NIH and other non-profit researchers? Absolutely. Am I willing to wait for perfection? Absolutely not. Federal law currently protects your DNA data from employers and insurance companies. If you find that to be insufficient, run for office.
Disclaimer: Interviewed and was offered a role at 23andme a lifetime ago (2011), no other affiliation besides being a satisfied customer.
Yeah GSK is definitely where the resources are. To circumvent regulations and laws.
Fuck actual research right?
If you don’t like the law, fix the law. If you have evidence a drug company or data provider violated the law, report them to your attorney general.
If you are covered under 42 CFR Part 2, then it would not be allowed because the patient has to give consent to ALL parties.
Not without express consent. The default is 0 hops. Same rules applies for banking info.
You want to share with someone else? You have to ask for consent again. A lot of people did unknowingly sign up to have their data shared like you say though, which I think is a regulatory failure more than anything else.
JohnFen's comment is correct. This is why 42 CFR Part 2 was created; HIPAA was too loose with patient data.
Guess what, they will sell it to insurance companies who will gouge you for the rest of your life. That was always the endgame.
Guess what, my maternal granddad had Parkinson's disease. I hope to god the do something with our data. I knew that $99 was not enough to pay for the processing, storage and hosting of my data. This is the long game for 23 and me. They are a genetic research company.
I knew this was something they were going to do and I am happy they are doing it. I hope we can come up with some profitable drugs that will cure some of these more complicated disorders. Just think of what we could do if we could easily treat Alzheimer's or other age related disorders. I am not even talking about cancer or diseases like pendred syndrome that could be possible result in couples hacking nature and removing genetic illness from their kids.
I am excited. Dangers, sure. Debate, totally.