Who ever did not see this one coming when 23andMe launched was asleep at the switch. DNA databases are ripe for abuse and this is just another form of abuse. First they get you to pay to give them your samples and then they get paid again to pass your data to other parties without obtaining your specific consent for that transfer.
When 23andMe launched I was absolutely amazed at how HN and less technical audiences ran with it, the abuse potential - and that's before we get into 'hacker lifted your sequences or prints' - was blatantly obvious.
I paid them so that they can do useful things with my sample, like correlate it with research or do more research on their own. I then volunteered to share more of my data in their surveys, and collected more samples for them for further research. I think it's fantastic that they are sharing this with drug companies. In fact, my main question is: What took them so long?!
My DNA isn't some terrible secret I have to hide in the dark. I'm just one of like 8 billion variants of imperfectly copied ape. Maybe paying 23andme to do something useful with it will be my only lasting legacy in this world, lol.
It's not that I "didn't see it coming", it's that I hoped this would happen from the get-go.
Insurance companies will offer a "DNA discount" and ask for DNA directly, and simply charge more to anyone who refuses, and then grade the amount of "discount" based on the risk profile back from the DNA sample.
If you hold out and refuse, you'll simply get lumped in with the riskiest.
taken to the extreme, if complete data availability allowed to predict the future with enough precision, then everyone would pay an insurance premium corresponding to their insured negative events. In practice insurances wouldn't have any reason to exist. The foundational premise of the insurance concept is that risk is spread across every participant in an equal manner.
While this is an interesting idea, no doubt, epigenetics casts major doubt on whether knowing the DNA expression at a particular time is diagnostically useful.
Sure. There are some conditions that are purely genetic, but many genes can be switched on and off depending on the environment - or even recoded in the replication process. DNA isn’t as static as we once thought and knowing a person’s DNA is not quite as useful as we imagined.
This isn’t as big of a deal as we imagined. It’s going to take some incredible processing to uncover causal patterns, and a huge amount of experimentation to determine whether they are stable against epigenetic changes. In my opinion, this is quite exciting.
Why wouldn't insurance have a reason to exist? Even the healthiest people need medical insurance because anyone can experience accidental injury requiring hospitalization and/or on going medical care.
This is presuming perfect knowledge; it's a thought experiment. In this hypothetical world, your insurance company does know that in 13 months you're going to get in a car accident that flings a 1.27mm shard of glass into your eye, that it's going to take 27 minutes to complete the surgery that fixes it, that you'll have an infection after that and the first 2 antibiotics won't work but the third one will.
It's basically just pointing out that perfect knowledge makes risk 0, and that insurance doesn't make sense in a world with no risk. At that point the question is basically just whether you distribute medical costs evenly across everyone or let there be winners and losers on those costs.
Then only insurance for actual accidents would make sense, but even then insurance companies could start analyzing more meticulously the individual probabilities of having accidents: do you have an active lifestyle? you pay a premium; do you practice sports? you pay a premium; travel more than the average human? pay a premium; are you getting older? insurance rate grows exponentially; already had an accident? sorry, you no longer a desirable customer.
> The foundational premise of the insurance concept is that risk is spread across every participant in an equal manner.
Applying this broad principle to auto insurance, it isn't doing well. Auto ins is ~mandated. Participants are forced to pay for risk pools they aren't part of.
ex: Car repair costs are skyrocketing. Premiums are also skyrocketing, including for people who don't carry collision.
Sure. But insurance companies leverage that mandate; they make people who don't choose (or can't afford) collision policies subsidize people that do. With this, the bargain of shared risk is quietly killed and replaced with exploiting the poor (or frugal) to pay for the non-poor (or lavish).
People in the UK should take note of this thread: this is what the private health industry dearly, dearly wants for you too. Treasure what you have while you still have it.
UK has done the largest sequencing project on Earth, the UK BioBank, and shares the data with both academia and private companies to do drug discovery. NHS is also chronically underfunded.
But as no one (yet) needs private health insurance, and very few people have it, it is not (yet) a societal worry that the data will be used to "offer a choice" to people based on genetic misfortune (the choice is bankruptcy or death).
> NHS is also chronically underfunded.
That's very much by ideological design. A recent ex-health minister even co-wrote a book which contained this:
> Our ambition should be to break down the barriers between private & public provision, in effect denationalising the provision of health care in Britain.
Notably he became health minister after this, not before, so the appointment says a lot about what the Party has in mind.
Note: Compliance departments in insurance companies are basically intended to facilitate by rote presentations of trainings to check off that list item as a required business operation.
Actual teeth to bite back or remidiate non-compliant activity of a company that the executives have decided to file under the "fuck it, nobody's looking" risk heading are basically not there.
Point being, just because the law is on the books doesn't mean it isn't being elided at every opportunity. You have been warned.
I have not done extensive research, but I suspect this is as effective as banning the government from data collection, with the result that the government pays companies to do that and it's somehow legal that way.
Not OP, and I agree that research needs to get access to DNA for medicinal, personalization and drug-development research purposes. What I'm more worried about is this sort of data being used to train a neural network that maps genes to physical traits, which would be both a goldmine and Pandora's box.
If I could compare it to something recent, it's the whole Content -> LLM -> Content loop that was created and we're all upset over now to various degrees. Our DNA is the content and up until now has been an opaque black-box with only minor views into it for very specific genetic diseases. Once they open up the box that allows them to get to things like IQ, height, muscle-density, resistance to diseases, fertility, etc, then the human race is in for a wild down-hill ride.
I worked in insurance and they all seem intent on tailoring everyone's insurance policies based on any minutiae they can dig up on them. For example they found out for life insurance that people who live in greener areas live longer, so they were trying to obtain geographical data for "greenness".
I asked them what the end game is. What happens when everyone's insurance policy is exactly tailored to them? What is the point of insurance then? If they get it too right they put themselves out of business. They didn't have a good answer.
I expect that marketing, regulation, and accidents will keep insurance companies around indefinitely. The upside of near perfect information seems great, for the insurance companies. They can ensure that the premiums they charge are higher than the expected payout for 100% of their customers. That won't be so good for the folks who need insurance the most though.
>If they get it too right they put themselves out of business.
No, they don't. Getting it too right just means they are able to more effectively compete on pricing since they know the lowest price they can offer while still making profit.
The point you missed is that when insurance is hyper tailored to specific people, you are basically paying for your own healthcare and can cut out the middle man
Uh, no. Insurance is paying for unlikely events, as it was said above. Greener area or not, you can still get run over by a car, event for which you definitely didn't pay. Or you house struck by lightning, or any such insurance cases might arise. The green area only affects the probability of such events, thus the tailoring.
But my point is by hyper-optimising for individuals it will at some point cross a line where it's not really insurance as you understand it any more. The unlikely event is that the insurance company gets it wrong, for example your house floods in an area that was not predicted to flood for millennia. As the insurance company gets better, the chance of an unlikely event gets smaller. How small can that chance get before you decide to just take the risk yourself?
That is assuming all health related costs can be predicted 100% correctly. If there is a 1/3rd chance to incur a cost then insurance lets you get away with only paying 1/3rd of the cost.
In that hypothetical in the best case the insurance company will never lose money by charging someone less than what they will have paid out to them and they will be able to sell this service to other companies, in the worst case they become essentially a bank.
Insurance makes money by ensuring their income (premiums) is greater than their outgoing (payouts).
The value of insurance (and why we pay for their profits) is in spreading risk across populations. They already target particular demographics (when the law allows them to), but I'm talking about targeting individuals.
If the insurance company can predict exactly how much they will be paying out to you in the next 10 years, say, then they just become a glorified savings account with a cost attached (their profit). The value is then essentially telling you how much you need to save. Data companies like 23&Me could then offer this without bothering with the savings account part.
My feeling is people won't accept this and will want actual insurance policies that actually spread risk across populations because people don't want to be told "you need to save twice as much as your neighbour because of your cancer in 15 years time".
Unless they have a crystal ball and can tell you whether or not you will be involved in an accident leading to serious injury (and the nature of those injuries) then you still need health insurance.
I know a guy who was robbed and shot. Had to have surgery and spent a few weeks in the hospital.
I have a neighbor that was jogging, tripped over a bump in the sidewalk and broke his arm. Few weeks in a cast.
I know plenty of blue collar workers who had on the job injuries that required medical treatment.
Your DNA isn't going to help with that. And in America, a simple 4 hour visit to the ER can result in a multi-thousand dollar bill. And if you're unfortunate enough to need a surgery and a multi-week stay then we're talking 5 figures minimum.
As insurance risk estimation errors approach zero, the value of having insurance instead of just a medical savings account approaches zero. Rates for higher risk individuals will become prohibitively high and those people will have no choice but to be uninsured. Insurance companies would be essentially only covering black swan events, as individual premiums would match individual health costs with high fidelity.
As a result the incentive to get comprehensive health insurance rather than just disaster insurance would plummet, as an MSA would be more cost effective and you also get to take advantage of better than predicted health outcomes in the form of interest earned and at EOL a potential inheritance gift.
Sounds great, except you jhave to understand that this would mean that society would somehow need to deal with the burden of the least healthy, who would be very unlikely to purchase, or be able to afford, insurance under this scheme. It’s like trying to charge up front for building roads. You just end up with no roads. Socialism (or in the case of insurance,capital funded socialism) is extremely beneficial to society in certain specific verticals.
The Genetic Information Nondiscrimination Act (GINA) of 2008 already forbids them from doing anything.
>GINA prohibits health insurers from discrimination based on the genetic information of enrollees. Specifically, health insurers may not use genetic information to determine if someone is eligible for insurance or to make coverage, underwriting or premium-setting decisions.
"Efficiently priced insurance": do you mean so the insurance company can set your premiums based on a more-accurate estimate of your risks?
The whole point of insurance is (or was) pooled risk. The more the insurance company knows about my risk (even risks I don't know about), the less point there is in me buying insurance; I may as well just put my premiums into a private sinking fund.
So even if your insurance worked out cheaper you would now see it as not worth buying because it’s too accurately priced? Literally what are any of you talking about, this is crazy talk. You buy insurance to hedge against risk, that’s it, if the cost accurately represents the risk then that’s a good thing. If you have unlimited money then it’s always financially better to not buy insurance, that’s correct right now… People don’t have unlimited money to spend on massive, unexpected acute financial obligations, that’s why people buy insurance… ITT: people not even understanding why they’re spending money on insurance every month, this is mind blowing to me.
GSK doesn't have your well being as it's goal, it has it's own revenue stream as its goal. Without an ethical framework around consent for the use of this data the potential for abuse is substantial, upsides are optional. They need to make that money back somehow.
If my worthless genomic data contributes to a drug that one day helps even one other person, I'm fine with this.
Would I prefer all this data be free and open? Sure. Failing that, would I want to hold onto it? No. I'd still rather some mega evil pharma have it and be able to develop some overpriced medication that may one day be genericized. It's not doing me or anyone any good just sitting in my body.
Hell, I'll spit for anyone wanting to do research, for profit or not.
I think there are very few true "good guys" in the world. But if mega evil pharma corp has even a 1% chance of accidentally doing some tiny good as a byproduct of their evil... that's already more than would've happened if 23andme didn't share it with them. It's cool with me if they make some money in the process. My DNA isn't some creative work that I need royalties on. What nature giveth, I spiteth.
No kids and never will (vasectomy). Parents couldn't care less. They were intrigued by the ancestry stuff though. They're not long of this world anyway and probably won't live to see genetic medicines become an everyday reality :(
My partner's bigger family also contributed a lot of their DNA to this or similar services. I'll have to ask her what they think of sharing it with third (fourth?) parties. Be an interesting data point at least. I feel like the HN crowd holds a lot of uncommon opinions (not good or bad, just different from most people I know IRL).
Ok, that makes you a minority in the sense that I think that the potential negative fall out from your decision is limited enough that you were entirely free to make it. But the bulk of the people that sent their family data to 23andme isn't that well informed and likely has no idea about the potential for abuse of such data.
Maybe it is the 'dark side' in me or maybe it is simply seeing so many corporate abuses over a lifetime in IT that I can't see beyond the abuse to the possible good. The fact that it has Google backing is one major strike against it, as is the fact that they were going to commercialize the data itself right from the get-go whilst giving their paying customers something the amounted to expensive infotainment. It's clear that they wanted the data, not clear that there would be benefits to the participants, the data returned is just too coarse for that and akin to doing a lot of screening without symptoms, a practice that the medical profession has warned against repeatedly.
I don't disagree with what you're saying (that people don't always understand the implications of their casual dealings with big evil corps).
But can I offer another perspective, one of potential differences in values?
Privacy, for me, isn't a super high concern. Having some is nice, but it's never my top consideration. (I know this skews against the dominant HN sentiment, and Slashdot's too before it. That's okay.)
Science, however, IS huge for me -- even when the science is done by sub-optimal orgs like your Big Evil Corp du jour. When I learned that Google owned 23andme, my reaction wasn't one of horror.
Instead, it was "Oh cool! Maybe they'll actually have the resources to correlate this with all their other data on me." I then proceeded to sign up for Google Health, Google Fit, etc., and made sure to upload my health readings to their servers in the explicit hope that they would be able to merge it with 23andme and other data. My dream was that one day they would be able to identify genetic markers not just for health and lifestyle stuff but also behavioral data, like my YouTube preferences and Gmail conservational styles.
Gattaca to me was a utopia, not a dystopia.
I know that's probably not a common viewpoint. But I was really excited by the possibilities, and it doesn't bother me in the least that Google knows so much about me. I just wish they'd do something useful with all of it.
FWIW, I just asked my partner about the data sharing. She said she's fine with it and would opt-in if given the choice. Most of her family too (many were early adopters of genetic testing). One individual in particular skews conservative and is conspiracy-theory-prone and would probably not, though.
I wonder how much of this preference is political or personality or similar. Would be interesting to plot privacy needs vs the Big 5 personality test, maybe. But how would you get participants? Lol.
> It's clear that they wanted the data, not clear that there would be benefits to the participants, the data returned is just too coarse for that and akin to doing a lot of screening without symptoms, a practice that the medical profession has warned against repeatedly.
To this point, yes, you're probably right, but these things are rarely black and white. It's a false dichotomy. They can be harvesting all my data but STILL offer a useful service at a good value to me. And -- more importantly -- nobody else stepped up to offer the same thing with a better business model. Whether it's 23andme or YouTube, it's not necessarily the case that all their customers have their blindfolds on. Some of us are just OK with the tradeoffs and buy into it willingly. The medical profession isn't always able to meet consumer desires, to say the least. And even if 23andme didn't do it perfectly... at least they did it. If the medical profession or the government wants to offer something similar, I'd still be interested... they just haven't yet, AFAIK.
> My dream was that one day they would be able to identify genetic markers not just for health and lifestyle stuff but also behavioral data, like my YouTube preferences and Gmail conservational styles
You know that's unlikely to happen. What's more likely is you helping that in the future people similar to you will be paying more stuff because of their genes or being profiled against because of their genes. Yes, there are laws against just as they are against discrimination on the basis of protected classes but the discrimination is still happening. And with DNA info, you can do it better and will be harder to detect. At the end of the day, other things being equal, any of those companies using dna to assess candidates will be more accurate than those than don't and should effectively dominate the market in a red queen race. Surely, it won't happen now (dna sequencing is way too expensive now) but when it happens, it will be hard to stop.
I think this is inevitable too, but... maybe politically incorrectly... maybe we should acknowledge it and roll with it, and help people with worse genes however we can, but encourage genetic modification for future generations?
I don't think this idea of "gene blindness" can really work, long term. We're lying ourselves when we say all people are created equal. They very much are not. That's the whole point of genetics.
But we can still say "but they still deserve respect, compassion, and equal treatment." That applies whether theu are disadvantaged due to race (itself genetic, though more plainly obvious), hormonal (sex and some birth defects), upbringing, culture, whatever.
I'm totally for opening up the genome for cross-examination and all the hard social questions that will necessarily come wit it, rather than avoiding the topic and pretending like it's not a thing.
Social norms will just change over time. Better understanding and usage of our genes can actually advance the species (and hopefully societies with it).
Even I agree with this, despite not having kids. Their lives aren't mine to monetize or publicize. Let them have whatever semblance of a childhood they can have under the already too harsh spotlight of modern media, yeesh.
It was bad enough in the 2000s when my mom liked all my Facebook posts. Real travesty here.
> It's not doing me or anyone any good just sitting in my body.
That's funny dude!
Not laughing _at_ you, but you just nailed self-objectification and
reification better than a whole chapter of social scince jibberjabber
or pschology babble.
Makes sense! I'm also a "yeah they can poke and prod my body and harvest my organs, not like I have any use for them after I'm dead" kinda donor.
At least it's consistently materialist, eh? (as opposed to spiritual dualism, etc.)
This is probably not a controversial stance here on HN, but IMO humans are essentially wet, mostly hairless sacks of proteins and dreams. It's kinda cool that despite that, we are motile and can pass for sentient (some days of the week).
I'm not demanding anyone else give theirs. I'm just happy to give mine.
Different customers of the same company can respond differently to their actions. In this case my opinion is that this a net good. Others can and will disagree, of course!
I wish the data would be combined with things like Vanderbilt’s BioVU databanks, etc, for actual translational research and not for swift for profit research.
This is just another version of “socialized research privatized profit.”
> GSK doesn't have your well being as it's goal, it has it's own revenue stream as its goal. Without an ethical framework around consent for the use of this data the potential for abuse is substantial
I don't like that you seem to be trying to drive a wedge between revenue streams and ethical goods. Measuring how much money societies spend on things is the best measure we have of how much societies value those things.
Companies (and people, including employees and customers of companies) do all sorts of horrible, unethical things. But profit (surplus) is a good thing overall, as is symmetric information and competition.
>My DNA isn't some terrible secret I have to hide in the dark.
Considering we leave our DNA basically everywhere we spend more than a few moments, it seems like a rather impossible task to keep it secret anyway. I mean if we are fearing some dystopian world in which people are discriminated against based on their DNA profiles, why would that only apply to people who volunteered their DNA?
This is a matter of scale, though. There is a big difference between
- Someone wants to know if your DNA matches the killer's... so they get a hold of your DNA and test it
- The companies you interact with all have easy access to everyone's DNA and can make decisions based on things like who is the most likely to get addicted to gambling.
We've been fighting tooth and nail to prevent things like "people with hispanic surnames have a harder time getting a loan for a house". It's illegal to do so, and we still have problems with it. Now talking about adding in all kinds of "this person is more likely to have this condition" into those calculations. And they WILL be included if they're available; even if it's not obvious.
>- The companies you interact with all have easy access to everyone's DNA and can make decisions based on things like who is the most likely to get addicted to gambling.
Yes, that is exactly my point. In these hypothetical dystopias, this is going to apply to "everyone's DNA" and not just some subset of people. In order to fear volunteering your DNA, you need to fear a very specific level of dystopia in which this illegal DNA discriminating becomes common, but companies don't do anything illegal to acquire the DNA data.
It is like imagining that people could have escaped Nazi persecution if they just never admitted they were Jewish. Dystopias don't work like that. The evil people aren't going to give you a choice.
If we are going to live in a dystopia, it likely isn't going to be the Goldilocks dystopia in which just the right amount of evilness exists for this to be an issue.
Yeah, this. If an entity really wants to screen your DNA, there are easier routes than figuring out how to deanonymise you from a collection of thousands of profiles with basic demographic info they've just bought or paying enough to convince the entity with the very profitable lawful line in selling anonymised data to break the law for them.
No it isn't. I never said anything about making hiding DNA illegal, just that it is impractical. If you want to map it onto cryptography, I'm making the rubber-hose cryptanalysis argument[1][2]. People are worried about some evil entity going through proper channels for their evilness when there are more blunt and direct ways to get what they want.
> My DNA isn't some terrible secret I have to hide in the dark.
You DNA isn't as unique as you think it is, or it is, but specific parts aren't. The way law enforcement uses DNA tests only compares a small part of your DNA sequence. People have already been wrongly convicted based on DNA "evidence". If 23andMe is opening up access to their database of customers there's a very real chance for people to be misidentified and potentially implicated in crimes they didn't commit, again this has already happened using existing DNA databases.
So yes, you absolutely need to keep your DNA in the dark and only provide it when it's beneficial to you and when you can trust that it's kept safe or destroyed. Providing DNA to a company that might sell it in the future was always a stupid idea. 23andMe might be completely safe in what they are doing, but what stops them from selling your data to say Palantir in the future?
> I think protecting ones DNA is an uphill battle.
Sure, I'd agree with you on that, but that doesn't mean that you shouldn't try and just give up. Ideally it should matter and there is a lot of good and positive uses, but still little protection against misuse.
> there's a very real chance for people to be misidentified and potentially implicated in crimes they didn't commit, again this has already happened using existing DNA databases.
The solution there is more light, not more obscuration. You are right, the more samples you screen from the more false positives you will get. The solution is to corraborate the matches with other information, and being transparent about the levels of confidence.
Seems like growing pains for that methodology. More data can inform our confidence intervals.
Someday soon, it'll be as ubiquitous as fingerprints, facial recognition, iris scans, etc. It'll be up to our legislatures and law enforcement to keep pace (it does take decades, sadly).
I don't think pretending something isn't there has ever worked. Only when it's so open and transparent and undeniable does it force through change.
"Mr. John Moore suffered from hairy-cell leukemia. In 1976, Dr. David Golde of the University of California Medical Center, recommended that his spleen be removed in order to slow the progress of the disease. Mr. Moore signed a written consent form authorizing a splenectomy, and surgeons removed his spleen. Dr. Golde and his research assistants extracted tissue from the discarded spleen, having recognized its value for research to develop possible ant-cancer treatments. In the next three years they established a cell line from the extracted T-lymphocytes. Mr. Moore was not informed about the research work or the potential of the cell line. In 1984 Dr. Golde was granted US patent 4438032 on the cell line, which generated substantial revenue through commercial arrangements with two biotech firms."
Exactly. If they were for example using genetic testing to set your insurance rates or something like this, that's dystopian. Doing medical research that leads to successful treatments for deadly diseases is hardly the sinister plot people seem to be implying it is.
There is a culture of exploitation in the pharmaceutical industry - exhibit one being the opioid epidemic - that would justify default suspicion any time a major player gets more leverage.
It's been illegal for insurance to use your DNA to discriminate against you or charge different costs since 2008 (see the Genetic Information Nondiscrimination Act).
If that changes I'll regret having used 23andme, but so far I'm not worried.
GINA does not cover life insurance. That said, I agree with the overall point, research use does not cover insurance using this data charging someone different rates, and would be business-ending / corporate suicide for 23andMe.
It would be the right thing to inform and share some tiny small part of revenues with these kinds of patients, even if not legally required. Of course I can see a problem with some being greedy and thus denying access to treatment to others.
I m glad they use the data, and have volunteered my data to other services as well. This was actually my reasoning for using these services from the beginning. It's sad that laws prevent them from giving us health reports.
DNA data is not worth protecting imho, and the benefits from their public use are very big. The DNA degrees-of-separation between any two humans is less than 3, so we are all traceable anyway already, and people should be aware of that. But the science/health benefits that can come out of this remain enormous.
Just because the benefits of sharing DNA data appear large, doesn't mean we should take potential drawbacks lightly. Imagine this: a future where a specific gene is linked to hard work. Companies start screening job applicants based purely on their genetic makeup -- if you don't have the gene, you don't get the job. Or even more worryingly, imagine the government starts surveillance on a group of people with a particular gene, claiming they're more likely to commit a certain crime based on some obscure study. It would lead to moral and ethical havoc. DNA data might not seem worth protecting right now, but unchecked, the misuse could be catastrophic.
>Under the health care law, insurance companies can account for only 5 things when setting premiums.
>Age: Premiums can be up to 3 times higher for older people than for younger ones.
>Location: Where you live has a big effect on your premiums. Differences in competition, state and local rules, and cost of living account for this.
>Tobacco use: Insurers can charge tobacco users up to 50% more than those who don’t use tobacco.
>Individual vs. family enrollment: Insurers can charge more for a plan that also covers a spouse and/or dependents.
>Plan category: There are five plan categories – Bronze, Silver, Gold, Platinum, and Catastrophic. The categories are based on how you and the plan share costs. Bronze plans usually have lower monthly premiums and higher out-of-pocket costs when you get care. Platinum plans usually have the highest premiums and lowest out-of-pocket costs.
As a generally healthy person it's very disappointing that catastrophic plans are only available for under 30s. [0] For me it makes the most financial sense to pay out of pocket for incidentals/annuals, but be covered for catastrophes e.g. get hit by a bus and wake up in a hospital.
What magical event happens to people at age 30 that led the legislators to ban catastrophic? Would love to see the actuarial data on that. I have no knowledge/evidence of the reasoning but to me it definitely smells like lobbying.
I imagine this was a political compromise to let politicians advertise the availability of low cost insurance plans for low earners like young people in jobs without health insurance so they were not hit with the tax penalty that used to exist for not having health insurance.
Over 30 is likelier to be making more money and in jobs that do subsidize health insurance so they are likelier to buy it. And since the whole scheme is actually a mechanism to tax, you cannot let everyone opt out of the tax.
It's pretty hard to hide cigarette usage (smell, color of teeth). Vaping is likely to be much easier to conceal though (does that count as "tobacco" though?)
The age one is completely insane considering the amount of unchecked age discrimination that American employers engage in. We decided to fire Bob because he’s 51 and it’s cheaper to employ a 27 year old. Oh Bob, sorry, BTW your market place plan is now also $1500 a month.
Everyone pays for everyone else’s healthcare, whether it be insurance pools, Medicaid, CHIPS, Medicare, etc. In America, we just do it in an especially dumb, cruel, and expensive way because it makes some assholes a lot of money.
We is in quotes because various demographics/political tribes want to pass the hot potato.
The beauty of the health insurance system is it allows you to deliver differing qualities of healthcare to different voter groups.
For example, high voter participation groups like old people can get Medicare that pays providers more and hence more providers are available. And Medicaid for poor people on the other end that pays much less and has stricter rules on prior authorizations. And you can give Senators healthcare that pays providers more than other federal employees, and so on and so forth.
No, we do it that way because both political parties are bought and sold by the assholes who run insurance companies. They use this corruption to impose a private tax on everyone. No one in the US is saving money. We spend more than most wealthy country for worse outcomes.
The insurance companies are not that powerful. Pharmaceutical companies are far more profitable, as are healthcare software, other tech, doctor groups, hospital groups, etc. You may want to look into liability laws and tort reform for other big reasons for why healthcare in the US costs a lot.
Do you work in the industry or something? Yes, all of for profit healthcare is a monstrosity that should be abolished. Everyone I’ve ever met knows the first part of that and it does not excuse how awful health insurance companies are or all the terrible things they’ve done, both past and present. Tort reform has been tried on the state level and it has no impact. It’s just a canard trotted out by those who are trying to keep the human suffering money pump pumping.
If I had to chose between making more money off screwing over an unemployed middle aged person seeking medical treatment or less money not doing that, I would choose the latter. As would most people, because they’re not depraved.
That's not true at all. No need to speculate, insurance companies are real. In fact, you're complaining about the fact that most people have already chosen the former. Is the medical industry really filled with depraved individuals? I suspect you're looking at this differently than them, and I'm interested to know where you think that disconnect might be.
Most people don’t work in the health insurance industry…? But the management of health insurance companies are almost certainly filled with depraved individuals. They’re repeatedly caught engaging in all kinds of evil and deceptive tactics to deny people necessary treatments, including those in quite desperate circumstances. The lower-levels? Who knows. Like a lot of other human suffering industries in the US, they probably just compartmentalize it away or are steered away from thinking about by the c-suite sociopaths who run them.
The comment I replied to specific medical insurance.
When governments restrict insurers underwriting criteria, they are providing a subsidy from one subset of the population to another. I think those are best accounted for as taxes and government benefits.
In the United States, my understanding is that your medical & employment discrimination scenarios are already illegal due to the Genetic Information Nondiscrimination Act of 2008.
There was already an effort to weaken this law in 2017. It didn’t pass, but if corporations are lobbying for loopholes it would be entirely unsurprising to see some slip into future legislation. https://www.vox.com/policy-and-politics/2017/3/13/14907250/h...
Any law could be subverted via these justifications. "Why should I register my gun when the government itself breaks laws, and its politicians corrupted by bribes!"
They'll get sued immediately by everyone who is denied a job following a genetic screen.
There's a reason companies who require a physical or medical history (usually done to find pre existing conditions to protect against future workman's comp claims) do it after the job offer has been extended (it's risky to rescind an offer for no reason by the way) - if they did it before, every applicant with a disability (and their pro-bono lawyers taking a slam dunk case) who did not get the job would sue.
> Medical insurance - oh you have cancer/hear attack/etc gene. You premiums skyrocket.
This is how insurance is supposed to work. It should reflect your actual risk levels.
Now, if what you actually want is socialised healthcare then implement that, trying to backdoor it via insurance gives you the worst of both worlds.
> Job opportunities - oh so sorry you have bipolar gene...
Then the company that looks at actual behavior rather than genes hires people slightly under market and makes bank. Then other companies start copying them.
> This is how insurance is supposed to work. It should reflect your actual risk levels.
Of course not. This is how perverse insurance works. Proper insurance systems work by pooling risks into large groups so that the few who are unlucky to have problems at a given point in time are covered.
The whole custom risk factor at the individual level is pure exploitation and a travesty of what insurance systems used to stand for.
> Of course not. This is how perverse insurance works. Proper insurance systems work by pooling risks into large groups so that the few who are unlucky to have problems at a given point in time are covered.
No just regular insurance before insurance companies figured out they could make more profits by making individual customization, which should be completely forbidden by regulations in the first place.
I'm not sure that I follow. Whats wrong with insurance companies factoring in DNA markers to put people at risk of cancer or heart attack in a higher risk pool?
That's not a custom risk factor at the individual level. Its just using data they believe indicates risk to decide what larger pool the person gets put into.
I don't know insurance law well enough to say if that's legally discrimination.
Now if you're asking me personally, I dislike the insurance industry in general. Insurance shouldn't be required, legally or otherwise. At that point insurance companies can use whatever data they want to price policies, as long as the terms are clear customers would actually have a choice whether they want insurance or not.
Companies use many forms of data to change premiums, many you don't have much control over (e.g. what area of the country you live in). Why is that wrong?
So car insurances shouldn't account for past driving experience?
Are you talking private insurance or socialised risk mitigation?
The goal of private companies is to make profits. There is space and use cases for both models. Of course large private companies put efforts into making people believe that's not the case.
Don’t compare car insurance with health insurance. Past driving incidents are perfectly okay to take into consideration for car insurance, some people need incentives to drive safely. But genetics is nothing people can change, it’s fixed.
This all assumes two perfectly definable categories of characteristic - fixed, unchangeable category, and incentiv-isable behaviour / changable category.
It's not always that clear e.g. genetic disposition to alcoholism is linked to actual alcoholism and related behaviours.
All the evidence I have seen points to “what you were born with”, including the parent(s), family, neighborhood, etc to be very heavily correlated with GPA.
Right, but for some reason it lets claim the moral high-ground. Right now individual taxes account for more revenue than all companies combined, perhaps barring payroll taxes.
Socialize medicine, please. A million dollars for a cancer treatment is insanity, when nearly 50% of the US population will get cancer at some point in their lives.
In the Netherlands insurance is provided by for-profit insurance companies. However, there are very strict rules - they are not allowed to refuse any applicant based on any medical reasons (including preexisting conditions), there is a list of treatments they have to cover, there are rules for the minimum/maximum deductible, etc.
I would not say that this is the 'worst of both worlds'. I actually think it has the best of both worlds, - namely coverage for everyone that needs it (benefit of social healthcare) and competition between insurance companies on price, convencience/reliability of apps, service, etc.
No, that isn't exactly how insurance works, and it would be almost pointless for individuals if it did work that way.
Instead, it works by bucketing risk. In the simplest form, everyone is in one bucket, ignoring individual risk. That means that all other things being equal (e.g. size and value of your house), despite you have low risk of your house flooding, you would be paying exactly the same premium as the person who who has very high risk because their house is built on a flood plain.
Of course people paying more for their risk than it warrants may see that as unfair - so insurers use more buckets - e.g. bucketing high, medium and low risks.
But there's a delicate balance here - for instance, insurers may just decide not to insure the high-risk category. Or even if they do, the premiums may be unaffordable or the insurance benefits substantially restricted. And the natural extension of categorizing like this is to put an individual in a category by themselves - and then to limit payout. Essentially making the insurance not any better than a savings account, and probably worse if you don't claim at the beginning of the policy, before there's a large pot in the savings account.
From the point of view of perfect capitalists, the insurers would like to insure people with negligible risk, for high premiums, for low benefits - to make the most profit. From a social-good point of view, we would like insurers to cover risk that people cannot control (e.g. genetic risk) for reasonable premiums and good benefits. Categorizing lives somewhere between these two - a kind of necessary un/fairness.
> From a social-good point of view, we would like insurers to cover risk that people cannot control (e.g. genetic risk) for reasonable premiums and good benefits.
You're using the wrong tool for the job there, if you want people to be supported regardless of their actual risk levels then you should get socialised medicine rather than artificially restricting what factors insurance companies can take into account (and there will be plenty of information leakage from due to other factors they are allowed to consider correlating with the banned ones).
> This is how insurance is supposed to work. It should reflect your actual risk levels.
This assumes the relation correlation between genes and adverse health outcomes are actually known. By definition that ignores personal
behavior and epigenetics.
If an insurance becomes to specific to the individuals it stops spreading the risk.
(Potentially in some US states): Your biological material was found in the bio-waste can of a facility that was performing illegal gynecological operations. You're under arrest for the murder of a fetus.
In general, a person's performance in their job is the best evidence for their future performance, followed by tests you can give them, followed by their genes. That's not to say that there aren't pointy haired bosses who could be sold a load of snake oil on the subject but that's probably nowhere you'd want to work anyways. And with medicine pre-existing conditions are a much worse problem than genetics could ever be but thankfully in the US at least our existing laws seem to have that in hand.
> sue the first two, get $$$. This is textbook discrimination
Ah but they did no wrong! They just licensed the AI du jur that functions pretty much like a black box, but just so happens to feed on multiple sources of data from dozens of data brokers. One of those brokers aggregates data from other brokers, including DNA data from DNA services.
Meanwhile, all the recruiter saw was "37% match" before reading your resume and moved on.
I don't think the first two are necessary a big deal in a western liberal democracy. We already have fairly strict legislation around data protection and selective hiring based on certain characteristics (like ethnicity - which is really just a much less accurate form of genetic classification).
There might be a period where we haven't legislated against that sort of stuff. But once we do there's going to be a pretty big paper trail if a potential employer or insurance provider is searching a genetic database for you.
Dictators? Yes, they could do that. But they could already send you to the gulag because of how you look, who you're friends with, what you said in the pub etc. It's another tool in their arsenal maybe, but it's not like they don't have a lot anyway.
Now imagine a future where not only we are screening job applicants based on their genes, that police targets a specific genetic profile, but we also mark people with the "bad" genes so that anyone can recognize them. Some sort of color coding, like white for good, black for bad...
Yeah... see where I am going...
Gene-based discrimination is not new, in fact, it used to be the norm. Now, it is called racism, and we are actually in a much better situation than we once were. Not perfect of course, but we have laws in place to limit such abuse.
If discrimination based on "non color-coding" genes is not already illegal in first world countries, I suspect the existing laws will soon be updated to reflect that once it starts being practical.
And I think it will be more readily enforced than for traditional racism. Racism is a natural, quasi-instinctive bias that you actually have to fight against, because there is no way you can ignore the skin tone of the person in front of you, but you can simply not use a genetic sequencing test. Plus it sounds like eugenics, something that became kind of unpopular since the 1940s.
Gattaca is fiction, with more attention given to having a good story than to realism.
Which was a success, it is a good story, and a movie I recommend.
What I think is that Gattaca, like most good dystopian fiction feels much more realistic than it really is, almost visionary. It is by design, it is a reflection of real world issues that readers/spectators are familiar with at the time of the writing, pushed to the extreme, and our natural negativity bias tend to make us forget the parts where the story was wrong in its terrible predictions.
Anyone can lose the genetic lottery (and everyone might lose it in some way). Even if you're considered fine by the genetic standards of the day, you can never be sure that your future kids or grandkids will be. Everyone will know someone, a close friend or family member, that's been negatively impacted by the laws so it's much harder to boogie man or "other" them.
Those laws would be wildly unpopular and would never survive in a democracy or even a populist dictatorship.
Gattaca while a great movie always rubbed me wrong as at the end it turns out society was "right" and he probably doomed the mission. His heart was "bad" it turns the whole movie from someone overcoming societal limitation to someone ruining the space mission so they can see space.
"The poors who somehow got into this fine dining establishment through all the obstacles we have carefully constructed are really ruining the vibe here!"
The space mission may not be the perfect allegory, but that's just nitpicking. How many people watched Gattaca and thought, "Oh no! That crippled tool ruined the space mission! Not my tax dollars oh my stars!"
And many people get well from placebo medication. We don’t fully understand human willpower and its ability to overcome the cards we were dealt at birth. The whole movie is literally about how genetics is not destiny.
I thought the point was that society was completely wrong and was basically overhyping the thing they'd all bought into. They had decided their method was so superior that naturally born people wouldn't live past 30. He'd already well beaten that, outlived his parents and didn't seem sick now. Society was far removed from reality and somehow forgot that natural birth worked fine for all but very recent human history. I find this statement about how society works more compelling than the cautionary about genetic discrimination.
The world is already GROSSLY, AWFULLY unfair due to genetics. This amount of unfairness is immensely larger than the amount that would be caused by genetic information being more widely available.
Making genetic information more widely available has likely benefits far far larger than the costs.
The world is as unfair as it is even _with_ us pushing back a lot on sources of unfairness. If we didn't push back because "it's already unfair", it would add up quick and be a _lot_ worse.
Can someone explain why they’re downing this? As Someone with schizoaffective bipolar disorder and Asperger’s, which is definitely affected by genetics because I seen in my genetics, I don’t see what the disagreement here is?
Can I ask, what would be your ideas about how DNA information could be used? For example, shared with the person themselves, and no one else -- so they know what the reasons can be, for problems they run into later in life.
Or do you see any government agencies that it'd be good if they had access to the DNA info? The health care system maybe? (If they didn't share the data against ones will, say)
I agree, but the other behaviors and sensitivities I have made extremely difficult in my life not because I couldn’t handle it, but because other people couldn’t.
I heard that, but it's like the end of days, it's always said to come soon, but doesn't no matter how much you wait. Conveniently, the prophecy doesn't have an exact date.
We already did these things, we discriminated against women, racial minorities, skin colors, and even more, religious minorities etc. We already have laws against these things, we never asked people to hide the color of their skin.
What's problematic right now is that only law enforcment has unrestricted access to the dna data. I actually want such data to be open source.
> we never asked people to hide the color of their skin
We have a bunch of regulations around "you can't even ask the person about that", specifically because companies cannot be trusted not to discriminate based on it.
Just take all the criminal cases in which DNA was used to convict innocent people. Now imagine that with a DNS database in the background as huge as 23andMe.
And of course selling DNA data was the idea from the get go...
The age old question: how many innocent people we are ok with convicting in order to convict the guilty ones. Personally, I don't think a for profitbcompany should even play the smallest role in that.
if there is more data, the dna identification will be more precise and correct also. Ideally i want this data to be open source, and thankfull you can download your data
Akin's Laws of Spacecraft design apply. If you want to have the biggest effect on how something shakes out become an artist.
And ideas have a flow. Nentally disturbed/child->Artist->Scientist/Engineer/Academic/Professional->Everybody else. Some other diversions may apply.
The mentally disturbed are the most sensitive to society at large's edge cases, but largely incomprehensible to everyone else due to divergent world view. The Artist breathes the surreal and unarticulated, in the practice of their work articulating that which defies the aggregate capability of the majority of society to manifest. That seeds the way for elucidation, exposition, and enumeration for the current flight of society's operant effectors, who implement it, which then trickles into the pool of common knowledge.
If you're seeing an artistic work in your life, and not keeping an eye out for it's implementations. You're running half-asleep to be frank.
You can release your DNA with an open (source) license. I personally would be hesitant, similar as I would not open source my fingerprints, health records etc., even if it is forbidden to abuse them.
I don't know, I'm most worried about law enforcement abusing access to DNA data, and courts being absolutely convinces of a 0% false positive rate. We may see a wrongful conviction based on DNA dragnet eventually.
I don't understand what are these immense benefits, to catch more criminals? Since when has throwing more people in jail reduced crime?
I guess this would stop someone who is plotting a murder but a school shooting is gonna happen either way.
I don't know about "throwing people in jail", but putting criminals in jail certainly reduces crime rates. As opposed to not putting convicted criminals in jail.
But we hardly need advanced DNA profiling to catch 99.9% of criminals (versus just standard DNA matching).
> I don't know about "throwing people in jail", but putting criminals in jail certainly reduces crime rates.
That's the sort of statement that seems plausible, and even intuitive, but probably needs a citation. It wouldn't wholly surprise me if it were true, though at moral and economic cost; but it would surprise me even less if it were false.
It’s literally self evident that a person in jail can’t commit crimes on the outside. The statement itself contains all the axioms you need, citations are not something required here. It’s like saying a dead baker reduces the amount of bread in a town for that day and you asking for a source
> It’s literally self evident that a person in jail can’t commit crimes on the outside. The statement itself contains all the axioms you need, citations are not something required here. It’s like saying a dead baker reduces the amount of bread in a town for that day and you asking for a source
You didn't say "reduces the crime rate outside of prison." I assumed that's what you meant, but it's not clear that ignoring the crime rate inside prison is a reasonable statistic.
People in prison also, presumably, eventually get out, and a claim that prison officials can accurately deduce the likelihood of recidivism, and whether it has been decreased rather than increased by time in prison, is far from clear.
Finally, putting lots of people in prison has an effect on people outside of prison. For example, it is possible—though, again, I don't know; citations are needed—that high incarceration rates lead to more crime outside, since, if a member of a community has a good chance of going to prison whether or not they commit a crime, then prison can cease to have a meaningful deterrent effect in that community.
Well if the data is being sold to drug companies, one massive benefit that is glarinly obvious is that drug companies may mow have an enormously valuable dataset for developing new medical technologies.
Im as anti-dna info-sharing as anybody, and I wont begiving 23andme a sample ever, but this is admitedly probably a pretty good thing. Even if it does ultimately serve to enrich some mega corps,consumers will probably get some amazing new treatments/therapies/medicines out of the deal.
Gotta agree with the DNA Data not worth protecting point. My every evolved instinct tells me to spread my DNAs data as widely as possible. Even if I don't see an immediate benefit I'd be foolish to argue with that kind of track record.
There's something important there about the nature of the information economy but I can't fully get my mind around it.
Which wouldn't be so bad if we didn't have a massive, unaccountable complex of public and private actors building surveillance and discrimination into the structures of governance. The fact that this is all extremely baroque and often faulty doesn't make it any less likely to ruin your day for no good reason
Yeah... I kind of dont care? Use my DNA to do whatever good you can with it. I can see how someone could use this maliciously, but there are far simpler ways to mess with someone's life. 23andMe also has an opt out check box, right?
But several consumer genetics companies do offer health reports. AFAIK it is perfectly allowed to turn insights from studies into personalized reports as long it is clear that this is not diagnostics or medical advice.
I willingly gave them my DNA. I want to support research and better drug development, and gave broad consent towards that end.
(disclosure: also interviewed there over a decade ago and declined the offer only because of lacking comp, don’t recall the name of their CTO around Jan 2011 but was a cool dude)
Did you intend to give your DNA to GSK PLC too? The company that bought the DNA data from 23andme is GSK PLC, the tenth largest pharmaceutical company and #294 on the 2022 Fortune Global 500.
In 2012, GSK pleaded guilty to promotion of drugs for unapproved uses, failure to report safety data and kickbacks to physicians in the United States and agreed to pay a US$3 billion (£1.9bn) settlement. It was the largest health-care fraud case to date in the US and the largest settlement by a drug company.
I intended to give it to anyone 23andme would provide it to. I previously provided it to Harvard’s Personal Genome Project, along with my lifetime medical records. More recently, Northwestern Medicine and a similar program in affiliation with the National Institute of Health (“AllOfUs”).
Yes, it is complex. I agree that providing personal data to trustworthy research programs is beneficial to the public. Do you agree that providing detailed health data to untrustworthy corporations can easily become problematic? Because so far, you've made it sound like you don't see a reason for an individual to not provide their data to 23andme.
It is problematic but has no perfect solution, as there is no such thing as perfect security. Create data security and governance requirements contractually. Require the partner carry insurance as well as attest to and provide evidence of their controls and processes. If they fail to protect the data provided, require penalties outlined in the data processing agreement.
Alternatively, 23andme could offer compute to pharma companies that can run against their genetic data lake, with DLP and data security controls between them and the pharma customer. This would minimize leakage potential while still allowing compute against the data.
Thank you! You mirrored my thought process exactly.
Is there an open genome movement where you can just donate your genome into the public domain? I don't really care who has access to it, but it's a hassle to have to manually apply for each project that wants it.
> I intended to give it to anyone 23andme would provide it to.
So basically any big pharma or big insurance corporation because those are the ones that will get it eventually and will use it for their own profile without regards to any negative consequences for you or anyone else.
I wish the data would be combined with things like Vanderbilt’s BioVU databanks, etc, for actual translational research and not for swift for profit research.
This is just another version of “socialized research privatized profit.”
> The Genetic Information Nondiscrimination Act (GINA) of 2008 protects Americans from discrimination based on their genetic information in both health insurance (Title I) and employment (Title II). Title I amends the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act (PHSA), and the Internal Revenue Code (IRC), through the Health Insurance Portability and Accountability Act of 1996 (HIPAA), as well as the Social Security Act, to prohibit health insurers from engaging in genetic discrimination. Title II of GINA is implemented by the Equal Employment Opportunity Commission (EEOC) and prevents employers from using genetic information in employment decisions and prevents employers from requesting and requiring genetic information from employees or those applying for jobs.
I'll never understand the degree of unearned trust start-ups tendbto get. Whatever they do, they have the benefit of the doubt. You want to contribute to research? Find and participate in a study for which you are a match. In that case, data is annonymized, and tailored to a specific disease / drug development / whatever.
Sharing it, in a personalized manner, with a for-profit start-up without an alternative path to profitability is just so naive... Giving your DNA profile directly to the likes of GSK would be better.
Problem is that your relatives and ethnic group didn't consent yet your decision is impacting them too. Not talking about helping drugmakers make better drugs, I'm talking about the nefarious use-cases, such as the leak and the long-term consequences of that.
I'm fairly uneducated in this area, can you explains in what ways our own DNAs will be used to our detriment by theses drug companies? (if will leave 23andMe and the likes out of the question)
I can think of a few scenarios that have different conditions/threats:
1. Something that would normally be your own secret to control which is used against you, like discovering you're suddenly un-insurable for condition X that you might not even have known you could get. Other variations in the space include embarrassment/blackmail or aggressive marketing.
2. Exploitation without "fair" compensation, such as if your family has a history of a certain expensive health problem and it turns out those genes are also the key to making an unrelated Miracle Cure, but none of that makes its way back to compensate people for the suffering/cost that enabled the benefit to everyone else.
3. Re-sharing with governments or law-enforcement, bypassing other rights/protections you would normally have.
1. Re: insurance buying the data to be used against you. This seems like a problem that could be solved by other regulatory venues w.r.t. pre-existing conditions in insurance.
2. This is a dramatic overreach of intellectual property. I put in no effort to create my genes and certainly should not be able to withhold certain beneficial amino acid sequences from being used by others simply because I exist. Not to mention the fact that the same gene is probably present in millions of people. Clearly I am not going to do the work to monetize some gene and help save people, so the people who do the actual work should be able to profit from it (unless you think it's better if people who could benefit from it just die). Fair compensation is zero; any finder's fee awarded in such an unlikely technical scenario would be gratuitous.
3. Governments already have this as soon as 23-and-me exists. Whether or not the data was for sale is irrelevant to Uncle Sam.
I can think of one dystopian application off the top of my head.
A pharmaceutical company develops a treatment for a terminal, currently-uncurable disease like Huntington's. Without your permission, they identify you as having the gene for Huntington's and pitch their drug to you.
Many people at risk of Huntington's deliberately don't test for it, bc the prognosis is so bad and it causes so much anxiety to know you have it. A marketing campaign like this -- even with a drug with marginal benefits -- could be both very profitable and devastating.
Bonus! The drug company itself wouldn't have to be the one to actually make the pitch to you. It could be a third-party pharma retailer who does it, selling the drug to you at a markup.
I can't tell if this is satire. Big pharma is going to cure my Huntington's, and they're even tell me about it before I start to lose mobility? What's the catch?
My guess is they live in the US and they're making their argument under the assumption that the treatment will be enormously expensive and you will have to pay out of pocket for it. In that case you're caught between a rock and a hard place: will I die a slow and painful death due to genetical disease X, or do I go bankrupt paying for it.
In many countries this is a genuine concern I guess. Even in multiple European countries with great healthcare and (nearly) free health insurance, "novel" (and often very expensive) treatments are not always covered.
This meme of becoming bankrupt to pay for drugs doesn't hold water, especially in the long term.
Look at HIV medications. It used to cost hundreds of thousands of dollars to stay afloat in the 90's, when the drugs were cutting edge.
Fast forward 30 years, and you can find generic antivirals for $110/month. As patents expire, medicines become more affordable. HIV is slowly approaching "cured disease" status in the western world for new infections, and is an increasingly manageable disease for existing infections.
It's better that some people could get the drug in the early days, funding the research that would save millions in the coming generation, even if others couldn't afford it.
The logic in this thread is just flummoxing. So many people irrationally hate companies that make lots of money so vehemently, even if the companies profit by saving lives that would be guaranteed to suffer/die without that company's profit-seeking efforts.
In most cases, being (truthfully) told that you have a disease and being offered a cure (at least attempted in good faith) is a good thing. Most people throughout history could only dream of something like this.
Not really sure why this is nefarious. I'd rather be treated than die. And if I don't think the side effects are worth it, then I'm still free to die. What does this have to do with malice?
That's the equation for big pharma. Now tell me you don't see a problem with this.
If you don't, I will help, a treatment is more profitable. And you know what's even more profitable? Knowing that someone might need your treatment in the near future or far future. Because you can extract even more profit from the person.
Yes, this means that you would get screened early but it also means that your healthcare costs would be much higher compared to now where most people (apart from US) only experience healthcare costs when they become old. Business models for early payment of potential treatments to offset the costs (don;t think hn crowd, think real people with real, see low, salaries) would likely become a reality. Now imagine being super healthy but 1/3 of your salary goes out to accommodation costs and another 1.5/3 goes to this futurist version of healthcare. It would absolutely devastate most people. Remember most people don't make the high salaries most HN folks make, they live paycheck to paycheck with barely enough to make ends meet.
At this point, what's the point of working in cures when treatments are much better? This is like academics only working on original research, gets you a field where most of the studies cannot be replicated
The possibility of safely doing whole body gene therapy is barely past experimental so it's hard to understand what you might be trying to explain (it's gonna be hard to cure a genetic disorder some other way).
Sure, an expensive drug to correct some issue with a protein is not the ideal solution, but it's just bizarre to cast something that represents tremendous progress as some kind of novel evil.
Yes because just snap your fingers and you get cured easily of a genetic disease, sure
"they treat you forever" well I certainly hope so, given the alternative is snuffing out
(yes yes I'll be the ones to agree that companies and researchers can be hard headed sometimes, but that's not why diseases go uncured - life and biology is not a tiktok video)
The solution that's better is "Actually get me healthy."
And once they have an expensive drug alleviating some of your symptoms while making them stinking rich, you are supposed to quit your bitching and be glad you aren't dead.
So if my insulin wasn't being produced, doctor told me, I should just die naturally instead of being grateful for insulin, because making someone rich is a greater sin? You're making very little sense.
As a society, the goal should be to make it so you don't need to pay some private company for insulin. Your condition would ideally be totally cured.
Instead, the current state of affairs (where they make a bunch of money off you) is a sort of local maximum and there is very little incentive to research a genuine cure unless such a thing would be more profitable than present day.
No, you're arguing in bad faith. It's obvious that that wasn't what the OP meant. Besides, the insulin graft is an excellent example of how in some countries people with a particular illness are just seen as dairy cows to be milked for every last cent: because life is priceless.
In a just world - not the one we live in - medicine would be produced like every other bulk molecule, because that's really what it is. Insulin could cost ~ what you pay for some other complex chemical. But because of patents and various graft protecting industry practices depending on where you live you may be overpaying by many orders of magnitude for something that could be quite cheap.
Society is not my personal piggybank for help. Being born with a health condition already makes it an unjust world. Being entitled to other people's work by your own metric of payment is also unjust.
the point is that in a fair world, the cure for your condition would eventually be found and produced but in your world, it wouldn't hence you will be paying more and more for healthcare as the number of potential conditions you could have grows
Given how insurance works, this possibility should concern people more.
Insurance is a bet. Like all gambling establishments in Las Vegas, they need to take in enough money to cover overhead, pay staff, pay off the (financial) "winners" and still turn a profit.
If your genes guarantee you X problem, it's a "sucker's bet." There's no money to be made covering you. It's effectively charity to let you buy coverage for a pittance knowing you will get a big payout.
Even if you work for an insurance company, having a genetic disorder automatically disqualifies you from purchasing a lot of their policies.
I suspect what will actually happen is that they'll take your money, but once you need the coverage _then_ they will suddenly realize that you're predisposed to that and refuse to hand out the money. That is, they will take the bet and then reuse the payout.
Oh, they'll still take your money, and they won't inform you explicitly that you're disqualified. Like all asymmetric information games, the way to 'win' insurance is to know more than the other party.
That's basically what would happen. So you would have any of the scenarios below
1. you pay higher because the info you provided them made them think that you are likely to be correlated with people that have genetic trait x which is linked to conditions w, y and z
2. you pay as normal, but when you want a payout because you suddenly have a condition for which you are genetically predisposed, you don't receive anything or receive a really small amount of money (small enough that they will make enough profit from you, but just enough that you won't sue immediately)
This is already illegal though, directly by the Genetic Information Nondiscrimination Act, which passed 420 to 12. I'm not pro DNA collection by any means but this argument gets tossed around a lot and it's clearly undesirable to everybody, and we can change/set laws to prohibit it.
It doesn’t have to be to someone’s detriment - it can just be unethical. The obvious agenda here is for a private company to use DNA data sets to develop/streamline drugs and profit handsomely (or write off any losses on their taxes). To me it is offensive that as a society we tolerate shit like this, but maybe I’m an outlier. Though, like most other commenters, I don’t see how anyone who signed up for this service did not see this coming.
1. they sell to insurance companies, insurance companies charge you a premium (obvs the dna profiling would be too blatant but it would happen, the money is wayyy too good to leave it on the table and any company that doesn't loses in the long run other things being equal)
2. big pharma knows you (where you just means people that are likely to be genetically similar to you) are likely to have x medical condition in the future, they relay this information to a third party, third party spams with you ads telling you to get check for x for free if you sign up for drug subscription that is highly marked up
I thought of these in 5 minutes. Now I imagine how many opportunities could be devised by thousands of highly experienced medical sale/marketing folks between now and anytime afterwards.
You have to understand, that your dna is like a video record of your potential present and your potential future, and just like video records are highly valuable, the same happens with your dna
Even worse though, is that it doesnt even have to be you submitting your data. Several killers have been caught because their family members have submitted DNA and the killers have been tracked down using DNA ancestry. It really sucks, because it only takes one gullible person to really expose your family to data mining.
Or even worse, premiums went up because you could have inherited costly diseases (but didn't), and they have no way to verify it unless you also prostrate yourself on the altar of no privacy.
How confident are you that the government of the country you live in will use the ability to genetically trace the entire population through long range genetic scanning to harm only people you think deserve to be harmed? Keeping in mind that as long as these databases are allowed to exist, the genetic information itself remains relevant for hundreds of years?
Basically, this let's the government put a tracker on every person as long as they can get to where that person was within a couple of months to years (depending on conditions), and every future government gets to decide exactly who should be subject to that level of surveillance, what crime is bad enough to justify it. Do you trust the government of the United States 100 years from now to be that aligned with your personal views? Zero concern that a Hitler-figure could arise in the US and use that power to exterminate large numbers of people?
Two wrongs don’t make a right. I object to non-consensual collection of newborn DNA as well.
And it’s not bringing murderers to justice per se. It’s the implications to others. I don’t want MegaCorp extrapolating my medical history via my cousin’s DNA.
Yeah, but now you're associated with a killer, whatever SNPs you share pile up into correlates.
Insurance companies see you as feckless, lenders see you as risky, law enforcement sees you as a likely criminal, justice sees you as a burden.
And maybe it wasn't even you that volunteered the sample. And maybe I share some of the SNPs, and maybe I have some countermutations, but they aren't properly analyzed. Now my feet are in the fire despite no predisposition to violence or recklessness just an association.
This is one step and I expect another. For the greater good, for security, for the safety of the nation, for the children.
I sure hope they don't use my DNA to catch any criminals. I hope they roam around undetected as before, I would never harbor any bad feelings towards any members of my family regardless of their rape, murder or other crimes. You don't want them in prison either, and wouldn't believe they did anything wrong regardless of the DNA and OTHER substantial evidence would you?
My hope is that Drug companies might be able to make breakthroughs in research for better treatments for people with rare genetic disorders by using this data.
But cynically I bet they're probably going to use it for marketing demographics purposes
Really worried about the day that it's Insurance companies buying up our DNA data to make sure we get the right coverage.
What do you mean “those of us didn’t see this coming”? They said out right this is what they were going to do with our data. This is nothing new. This is just an extension of the same thing they were doing.
Plus you can opt out and you could delete Your profile and your data and download the raw data to use yourself.
I accepted this trade-off because I had an unknown genetic condition in my family and this helped me find out what it was.
80% of people agreed to give consent, and only the data of those people are being used for research purposes.
It is furthermore used at a population level, and in anonymous fashion. Your individual genetic data is not very useful as a singleton, it is only useful in large numbers to do GWAS (genome-wide association studies) to identify novel disease-gene relationships.
This is not the first GSK collaboration with 23andMe. They identified a novel cancer target now being further developed CD96. So... wow, what a terrible thing, you may now have contributed in a tiny way to people potentially getting life-extending medication. What terrible abuse.
23andMe has about 14million customers. 80% of that is about 11M customers. GSK is paying $20M per year I think. So that's about $2 per customer, if we're being generous. Would you feel less abused if each customer got a $2 discount or rebate?
I mean sure we pay them and now they are "selling" our data to pharma companies... to research human health and learn more.
At some point does being against other people using your data work against you? If every human refused to allow their DNA to be used for research the entire species would be worse off.
The obsession with protecting our data is very strange to me.
They are selling the data for (allegedly) medical research now. Tomorrow, they will sell it for genetic discrimination against you. The point is: it's not your data anymore, and from your perspective it can only be used against you.
While I understand there are pro-social uses of this data, such as medical research and identifying criminals and their victims, those exceptions should be clearly delineated by law in a white list, with strong safeguards, with the default being DNA privacy.
Spent several years with a mystery illness that nearly killed me. Turned out to be genetic. Easy treatment, but only if you’re aware. (Factor 5 Leiden)
Kind of regret not getting the full work up done at one of places. Maybe would prevented a number of blood clots.
110% with you on this. In fact, even if they hand out your data, against any agreement you had with them, the worse they would face would be a pittance fine.
There is no situation where they would put people over money and DNA is immutable.
Some people make enough money that the utility of 23andMe is worth it them, and they don't care if 23andMe makes money selling their anonymized data on the side.
A lot of people just really don't care about data privacy at all.
I generally agree that 23andMe was obviously going to end in something like this. The actual value was never in the "fun personal genetic testing" - it was always the aggregated population-wide DNA data.
However, I do think a national "DNA database" would be interesting, if it could actually be made truly anonymous. I have no idea if that is possible, but assuming it is - I think there would be massive benefit for this data to be available to public (and private) researchers for the cost of simple maintenance and upkeep of the database. Who knows what great discoveries could be made in the future with this data available at the fingertips of many.
However, I don't know enough on the subject to understand the evil potential with a database that can by truly anonymous. Maybe it enables making a new cancer vaccine for the most common type of cancer. Maybe it enables creating a virus that is lethal after exactly 28 days to only a certain segment of the population carrying a specific gene. This bit is certainly what gives me huge pause. I also suspect truly anonymizing such a database would be extremely difficult to nigh-impossible.
That all said, while my DNA is in government databases against my will (many mothers signed up for those "get your kid back if kidnapped" law enforcement drives in the 80's and 90's) I will never willingly submit a sample to such a service unless I have exceedingly clear control of all my data and assurances it will be destroyed after whatever specific results I need come back.
Imagine a nationwide US gov research program that collects DNA for the purposes of prescription drug research.
They'd be storming the capital again, no matter how much good it can do.
Now imagine we had to raise taxes to support it. Preposterous! Communism!
Instead a company was founded on the promise of providing a useful product to both consumers and producers. Let them get rich, I'm pretty sure this is a net win for all parties.
I wonder how this works with the GDPR. Not sure if their service is even available in Europe, but if it is, Europeans at least should be able to just require them to delete all data whenever they want.
After reading the article, it looks to me like giving access to this data is not what's new, it's that the contractual terms of the existing agreement have changed. That is, it seems like 23AndMe already gives access of some form to pharmaceutical research companies.
Two questions I had:
* I'm vaguely familiar with the challenges of anonymizing omics data, and I'm wondering how they expect to make someone's entire genetic profile sufficiently anonymous or deidentified. All I've seen from them is one of their example reports, and you could take the name off one of those, and it seems like it would still be pretty easy to reidentify the subject just from that high level report, let alone from the raw data.
* When they say these are users who have opted in to data sharing, I wonder what form that actually takes. Is this one of those things where everybody who uses 23AndMe is opting in? Did these 14 million users all actually provide informed, active consent? I assume that to maximize the value of that data, 23AndMe is incentivized to interpret consent as broadly (and vaguely) as possible.
My biggest concern is that my siblings and parents have all signed up. So (more or less) my DNA is in this database, even though I have never interacted with the organization.
Yes, I wrote about that when this all first started happening. Not that anybody cared... it doesn't take a whole lot to be able to identify you given some samples of your extended family. And as a means of elimination it will be extremely effective.
Gattaca is an amazing movie, it has aged so well I find myself having more and more appreciation for the amount of thought that went into the script.
Yes, I know what it is about. But what gets me is how incredibly prescient it all is, we're pretty much running headlong into this future without any ethical framework to guide any of it. It's a free-for-all right now, as if the new frontier of the Wild West re-opened. Reminiscent of the early days of the web. But Gattaca seems to be used as a blueprint rather than a warning.
> But Gattaca seems to be used as a blueprint rather than a warning.
There's a founder of a genetic sequencing and embryo selection start up that I talked to who said they were "inspired by Gattaca" and isn't shy about bringing that inspiration up[1] at any opportunity.
Their company's promotional material also isn't shy about selecting embryos for predicted intelligence, height, etc.
I'm on board with the idea that it's going to be difficult to make the opt in on something like this respectful of the actual wishes of the participants, but they are at least partly working in that direction.
No, the horrors of the potential downsides associated with the abuse of that information and the fact that once it is out of the bag you can't put it back in.
It's never about the data itself, it's about what the worst possible groups can do with it given some nation state backing.
> Did these 14 million users all actually provide informed, active consent?
Virtually impossible, even without preconceived notions of this company's ethics (which... should be obvious), because it's actually very difficult to get informed consent. Not only does it take longer and more work to get the consent, you'd actually have to work pretty hard to define a system that >90% of people would consider true informed consent. There's no blueprint for it in the corporate world. The default consent-getting is so bad that even doing a bad job can look amazingly progressive in comparison.
It's not clear to me this takes automatic effect, and actually states "If you agree to this consent" - I assume that users are given the option to consent or not?
This seems to be the usual TOS - https://www.23andme.com/privacy/
and it says "We will not share your genetic data ... without your explicit consent."
So the news here is "Drugmakers are set to pay 23andMe to access consumer DNA for consumers that have given their explicit consent to do so". Maybe the fact 23am is getting paid is considered a sour note here, but it doesn't seem this is otherwise underhanded.
No, there's nothing underhanded here. 23&Me has never hidden its long term intention to use genetic data, from informed consent customers, to help solve diseases. To me the idea was obvious from before their founding, and it's amazing how long it took them to get to this point.
Uninsurable for all your descendants. The mental problems some developed? No coverage of that in life-insurrance - forever for all descendants carrying the genes.
More then average aggression as a teenager? Presume your kids on some invisible watchlist.
This law is unrelated to big pharma, but I think the answer is “yes, but pharma follows the law.”
Or at least the law as they interpret it. Look at the opioid madness and even with that, I think big pharma was being Lawful Evil. Once the law is determined, I think they follow it. Even though they lobby to change it.
Insurance companies could directly ask for DNA if they don't care about legality. And in return they could easily offer say 90% discount to 90% of the people.
All I am saying is insurance companies could ask and people will happily give their DNA for say 90% discount(which I think they could easily provide). They don't need family members or any other things or any other backdoor.
It was illegal in the movie Gattaca too, but they explained it by suggesting companies / insurance will just invisibly discriminate anyway which I think is most likely where this will end up in the real world
Its amazing how quickly sentiment shifted from despising the Sackler family and big pharma in general to raining free government money on big pharma and claiming they aren't a problem.
That's one hell of an impressive PR turn around honestly.
Don't get me wrong insurance companies are a problem too, I just can't let pharma off the hook.
How was that agreement collected? Was in similar to how OpenAI gets consent to use your data for further training, in that they disable certain unrelated features if you don't give consent, or was it unconditional?
23andMe website > settings > Research & Product Consents.
There are three options:
- Research Consent Document: Allow 23andMe researchers to use your genetic information to study a variety of topics, stripped of name and contact information and aggregated. May involve 3rd party collaborations including non-profits, pharmaceutical companies, and academic institutions. Results of research may be shared publicly.
- Health Records Project: Connect your data to your healthcare providers using "Human API"
- Individual Data Sharing: This is a supplement of the first one and includes additional data points, most of which come from interacting with the website.
This information is available directly on the page I referenced, not hidden in a ToS document.
Thanks! So none of those are checked by default and the user has to manually go to "Settings" and then "Consents"? If that's the case, I don't see what the issue is, people really gave them the consent to do what they're doing now.
> You know what would be fun? If we could see where all of our ancestors were from
That is the part I could never understand. Maybe I have jumped to too many conclusions in my past.
So, you send your DNA and your results say you are 25% Irish or whatever broad "Northwestern European" category you are lumped into.
Okay, cool. . . But that does really make you "Irish" like someone that was born and raised in Ireland? Someone who grew up immersed in the culture, history, languages, etc.? Go tell someone from Ireland that you took a DNA test and that you are part Irish. I guarantee they would not care, probably hear it all the time from Americans, and would not think of you as one of them.
Another aspect about ancestry that has always bothered me is that I feel like it's a socially acceptable version of Nationalism-lite/Racism-lite.
"I am proud to be of Italian descent!"
Why? Do you think Italians are better than other people? You didn't do anything to earn your heritage, and sure, Italians -- like all cultures -- have made wonderful contributions to humanity, but those contributions were more than likely due to their culture and resources vs. the DNA in their cells.
"Wow! I two of my grandparents from 5 generations ago were German"
Cool, except Germany was only established in 1867, so they probably were Germanic people, but not "German" like one thinks. After all, countries are just lines on a map.
Lastly, aren't all people with European ancestry related by at least one common ancestor if you go back like 500-1000 years? I think if you go back like 2000 years or something, everyone on Earth shares at least one common ancestor. So, regardless of what the DNA tests say about your ancestor 4x generations back or however far back they go, we're all related anyway, and maybe we should start acting like that towards one another.
Seriously, what's the appeal to these tests? I can understand health information slightly more, but couldn't a hospital do that for you?
Ah. Its nice to know my worst nightmare has already been in a video game from 25 years ago. I guess I'll just go outside and stare at squirrels for awhile.
I don't see anything credible there about nation-states currently engaging in this research. I think generally it does not appear to be a productive line of research.
Preventing a database from existing isn't gonna stop people with that capability. If they can make the targeted virus, they can forcefully obtain enough genetic samples from their targets to determine the information they need to do so.
The idea that a small technical road block will protect society from horrors is misguided.
Like it wasn't great for people that were identified in government registers as being in groups that the Nazis targeted, but they would have made up targets just the same of there were no government registers.
How difficult would it be with 2023 technology to produce DNA trace evidence for someone else given the sequenced information in these systems? Is there enough information there to do that, and if so, what are the technology hurdles?
23andMe has - fortunately, and to the best of my knowledge - not done any whole genome sequencing, they have made 'prints' ('Genotypes') that can be used to identify a person, but can't be used to re-sequence the DNA. That said: they do have your samples and there is a chance that they have made full sequences of select samples. But whole genome sequencing is still expensive enough that they would not be able to do this today. But given a few years advances in readers and someone with access to the samples could re-run all of them and obtain full sequences for their whole sample inventory.
Am I right that sequencing the DNA is one thing but manufacturing or copying? that DNA to produce enough to falsify evidence would be much more difficult - in a Gattica type scenario?
I get what you're saying, but nutrition is probably not a great example because we know nearly nothing about it. It's not ok to lock someone in a room and force-feed them for years to get data.
Anyways, that aside, what's insane to me is that there is a nearly-simultaneous story of the Opioid epidemic and people aren't losing their minds over this.
It's possible to investigate whether diets produce beneficial results in subgroups even without having a proper general model of diet and nutrition.
It's analogous to investigating whether drugs produce beneficial results in people with X disease even without having a proper model of how exactly X disease works.
We don't know that pale-skinned Caucasians need different recommendations in this scenario. That's the point. We barely know anything about nutritional science, let alone what one specific race of people needs.
If you have no clue how sun exposure actually affects the body beyond "ow burn hurt", you don't have the necessary knowledge to begin creating highly specific treatments. What would you base the science on? There's no real foundation.
I think US law has it backward, and health data should be publicly accessible by default, and very easy to share with researchers. I care so much more about solving diseases and reducing costs than I do privacy. I think people underestimate the costs of privacy on both. Unwanted effects (like discriminating based on data) can be legislated separately. Once we are all effectively immortal, I think we can loop back around to the privacy thing. I did 23and Me years ago hoping my data would be used for research.
I feel that privacy absolutists dominate the narrative, but given the choice of privacy, cost, and effective medicine…how many people really would choose privacy?
This is the lie sold to every generation's wealthy and powerful. The idea that our tech now is better than before and we're all going to live forever.
I don't disagree that health data should be public, but so should all medical procedures and prescriptions. They should be covered by single-payer, too. That way no one has to worry about their ailments, but are also accountable to everyone else for the services they use and demand.
The idea we're going to live a lot longer than other generations is a common one among those beginning to lose their youth who spend too much time in the science-will-save-us narrative.
Other countries like Iceland have excellent genomics projects in comparison. 2/3 of Icelandic adults are sequenced and these are made available to researchers. They have represented a very important control population for medical genomics for example, among many other excellent projects.
Just like letting people store your phone number in their contacts list... the only way to actually stay away from some of the most invasive companies is to live in isolation.
To delete your 23andMe data, go to your account settings page and find the “Delete Your Data” option under “23andMe Data.” You can download any or all of your data before you destroy it.
"Any discoveries GSK makes with the 23andMe data will now be solely owned by the British pharmaceutical giant, while the genetic-testing company will be eligible for royalties on some projects."
No different from the sample of cancer they got from cell lines. After all, Steve jobs father only contributed DNA data, he isn't going to receive royalties or any benefits from his genetic data's activity.
You could probably try to mount a legal fight if you've got the money and the time, because they probably didn't delete anything, and there's a chance doing so was illegal. But, it probably wasn't even illegal for them to ignore your request.
Is there any company that offers your DNA to be sequenced but will promise to just give you back the raw data (or aligned to genome) without storing or selling it to companies?
Yet another example of individual customers not being companies' real clients.
As long as there are organizations willing to pay millions/billions for a company's customers' data, that data will eventually be sold/licensed/shared/etc to them. Companies would be leaving money on the table otherwise, and shareholders won't have that.
Everyone here has a negative take. Yet, when people post that cutting edge drugs might save their lives you all want drugmakers and the FDA to move faster.
What is it?
Do we want to save people's lives or not? This is critical data for developing new drugs.
Keep in mind all of the people who did this, said they want their DNA to be used for research. If you didn't opt into that, you can still use 23andMe! But your DNA is never used. What's the problem here? I volunteered my DNA. And if there was a government scheme for people to do so that so that we can help advance medical science faster, I would sign up tomorrow.
Do you want to live longer? Find a cure for your grandparent's cancer? Find a cure for multiple sclerosis? Find genetic markers for autism? etc. All of these require data.
The hypocrisy and knee jerk reaction on HN about these issues is astounding.
You can look through posters' comment history, you know. Come back when you've found one person who's actually making both of those arguments instead of fighting this strawman.
I hope that my DNA was part of the sample that was sent to drugmakers.
I do not see how it can negatively affect me as data is anonymized.
At the same time if it will help to develop better drugs -> this is good thing for the humanity.
If someone will make money in the process - 23andMe and drugmakers - this is great as it will incentivise other companies invest to similar research projects which, again, looks as a good outcome for the humanity.
If information about my DNA will make a drug being more beneficial to people who share DNA with me - my relatives and I will benefit as well.
> Because insurances can use DNA knowledge as a justification for charging you more
In America they cannot. This is forbidden by law.
... But they should be allowed to, you are more risky to insure. Just like under 25-yo's are more prone to accidents; or coastal houses are more prone to flooding.
I would really like to get my DNA analised. Mostly to see what deseases I might be prone to get. Obviously 23andMe cannot be trusted. Is there a more privacy focused provider? Ideally who just gives me the result and then deletes my data?
Are they anonymized? Would think this is illegal even if users agreed to it which most would be unknowingly agreeing. Like agreeing to hand over your first born.
If anonymized, are there issues? If it helps cure disease with anonymous dna, why not?
Merck was involved from day one. Very early in the database scraping they identified a cancer treatment based on data collected within the first year of operation.
A company that helps drug company was always the plan.. they just needed that googol of human data.
Granted, it's not much, but I did this under an assumed name and declined to allow them to keep the sample. I think it's good that the DNA is being used for science, I just hope I can keep some privacy from it.
I take your point, but the only family I have is my wife and children. My entire lineage has weathered on the vine from everyone dying and not having children. Outside of that my nearest relative is a second cousin once removed. I'm in a unique situation, but I take your point that it could still be identified down the line.
We bought their kits but after reading their terms and conditions never used them. It was clearly a land grab.
Hardly matters as close relatives did it anyways.
We need a privacy bill of rights that keeps companies from using our very DNA like this in the first place. without a strong legal framework, misuse is inevitable.
Also, consider that much genetic information about an entire lineage is revealed by one person opting in for the entire lineage. This has implications beyond one persons choice, and those implications are long reaching and will become increasingly economically impactful as technology matures. Is it morally correct that companies can know tons of genetic information about people who never opted in merely because they share DNA with one that does? It’s not handled in the T&Cs that’s for sure. Not has 23andMe ever addressed it.
Why? People choose to upload their data if they want to. If by 'stealing' you mean your voluntary upload and not reading the TOS it's hard to have sympathy. Most people CHOOSE to upload their data to private databases to get more info since the us government is rather conservative with their databases and it's not HIPAA either.
Because companies incentivize behavior and pushing all responsibility onto the end use for predatory business practices is very outdated thinking.
You can choose not to have credit but without credit you can’t really fully participate in the financial system, but a home or a car, rent an apartment, etc. But it’s a choice to participate.
You buy a computer it’s not really a choice to accept the OS terms and conditions. Not if you want to use the computer.
Many things masquerading as choices are not a choice really, though people pretend they are.
We don’t need sympathy, we need ironclad data protection for users who do care even if others do not. The illusion that consumers can make a choice on many of these products and data agreements is a useful fiction that benefits companies and is often subverted to unfairly benefit just one of the parties: the current system is frequently a predatory exchange by companies designed to incentivize behavior that benefits them under the illusion of choice.
Having seen data brokerages in great depth I can tell you the amount of information and type of information collected it hardly being done benevolently, and it always seems to go right to the edge of legality and morality in terms of what can be collected. Most importantly unless you are working deeply with the datasets it’s hard to understand just how profoundly powerful recombined data can be. So while users are offering approval to collection of data on a data platform basis the recombination of data is almost never explicit and has far reaching implications most people cannot really fathom. Recombination of released data is never presented to users in this way, as each company contributes their part and looks benign in isolated agreements, but they are not. Particularly not in the age of AI.
In addition data is durable long after that company and their aligned business model is defunct. Yet there is no opt in for continued use even if the data goes to a use that would be objected to by the original grantor. This is deeply problematic.
To call that a “choice” to release information is farcical under the current system. Beyond dark pattern in gaining the data, endurance beyond intention, unintended use and irrevocability are deeply, deeply problematic issues.
Respectfully, they “agreed” is a weak argument given the complexity of the modern paradigm.
To go into philosophy a bit, you make a deal with society when you live in it (Rousseau). If you post online, on the clearweb, you should expect some logging where you volunteer your information. If you upload your DNA, it's not accident. The privacy laws are as such that encourage days gathering behavior, although there are places where photos and cameras are not allowed to take pictures of others.
These actions are on the edge of legality because it's where there is growth. It's the nature of an intersection of capitalism and science. If it was illegal they would only do it when its wasn't enforceable (Uber).
All these fears haven't come to pass and DNA had been in databases for many decades, this fear of the unknown would freeze everyone into inaction if unintentional consequences were a great fear no German would have another child again.
Consent is an intellectually lazy framework. Far more often than we do so now, people need to decided ex-ante what is and what is not OK--consent or no consent be damned.
AND it was passed with a Republican president and with essentially unanimous votes.
"In 2008, on April 24 H.R. 493 passed the Senate 95-0. The bill was then sent back to the House of Representatives and passed 414-1 on May 1; the lone dissenter was Congressman Ron Paul.[5] President George W. Bush signed the bill into law on May 21, 2008.[6][7]"
I assume in the smallprint when you got 23andMe to do a DNA analysis of you, it said that you give them the right to do this.
One of those times where reading that small print realllllllllly was important. And anybody who signed it presumably didn't actually understand what they were signing away there.
I'm not a lawyer, but if I'm 23andMe, and I get sued in the USA that there was no actual meeting of the minds here, and that they don't really have consent regardless of that smallprint, I'd not be all too confident I'd win that case (I wouldn't be confident it's a total loser of a case either; the users _did_ sign, after all).
Same situation in the EU and I'd be even less confident.
Hypothetically pushed scenario: A smallprint / clickthrough / 'you accept by tearing this sticker' style licenses dictate you owe them $100000 and a kidney if you fail to review the product with the maximum possible score within 1 month of purchasing the product.
You tear that sticker and fail to review in time. They come a-knockin, scalpel at the ready. There's zero chance you lose in court. That's not something you get to stick in a clickthrough contract. No meeting of the minds would be the legal basis.
Hence why I wonder: Will 'you signed away your rights; we now get to sell your DNA profile' actually hold up?
Imagine a nationwide US gov research program that collects DNA for the purposes of prescription drug research.
They'd be storming the capital again, no matter how much good it can do.
Now imagine we had to raise taxes to support it. Preposterous! Communism!
Instead a company was founded on the promise of providing a useful product to both consumers and producers. Let them get rich, I'm pretty sure this is a net win for all parties.
> Imagine a nationwide US gov research program that collects DNA for the purposes of prescription drug research.
It's not unprecedented in other parts of the world. Almost every single person born after 1975 in Sweden is a part of the PKU-registry whose usage is encoded in Swedish law:
> On July 1, 2023, a new Biobank Act came into force (Act 2023:38). The Act specifies the purposes for which PKU samples may be stored: medical care and diagnostics, epidemiological studies, monitoring and quality assurance of operations, and clinical research and development.
The promise was always that police would never be able to use it for lookups. Unsurprisingly, the police has been trying to get access to it since inception.
I'm not sure how useful it's been though, I don't think I've come across anything major that has been solved via the registry, but then I'm not heavily in biology and related areas, so maybe that's just my ignorance.
I agree wholeheartedly that other countries have implemented programs and general laws that the US should do, but am leaning on the general US sentiment that we're somehow different and should do everything (seemingly) the hard way.
In this case, however, 23andMe seems like the "easy way" since it's paying for itself and is opt-in.
The USA does have a publicly funded genetic biobank mostly of US veterans. Its somewhat notorious in the research community for being difficult to gain access to. The UK biobank or the myriad other national biobanks are generally pay to use for researchers and are anonymous.
When 23andMe launched I was absolutely amazed at how HN and less technical audiences ran with it, the abuse potential - and that's before we get into 'hacker lifted your sequences or prints' - was blatantly obvious.