Drugmakers are set to pay 23andMe to access consumer DNA
bloomberg.com
bloomberg.com
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.
Also, bringing murderers to justice is a pretty odd thing to object to.
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.
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.
But I would feel bad if, e.g., insurance premiums were to go up because I had inherited risk factors for some costly diseases.
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?
(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)
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.
https://www.personalgenomes.org/
https://www.joinallofus.org/learn-more
I still want fraud prosecuted, regardless of entity. Complex problems are full of nuance. Are we here for sound bites? Or to solve complex problems?
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.
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.
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.
Your health insurance company for example ?
> 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.
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.
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.
And God forbid you object to the side effects or quality of life this gets you.
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.
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 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.
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.
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.
"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)
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.
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.
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.
Someone even more cynical than me.
/Still naive after all these years.
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)
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.
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.
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
These are two independent statements with no connection whatsoever.
"I gave up my right to bear arms to stop wars in the world"
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.
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.
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!
It was bad enough in the 2000s when my mom liked all my Facebook posts. Real travesty here.
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).
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.
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.
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 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).
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.
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).
(A Trek TOS thing I think)
This is just another version of “socialized research privatized profit.”
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.
.....please get back to us on how that opinion ages once your insurance companies get ahold of the data.
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.
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.
People love a "discount".
As we were insuring over a million in the mortgage/loc, I guess they have diff requirements.
They sent over their own funded nurse, who collected vitals and blood samples which we signed off them running any number of tests.
I should have checked if any clause for DNA. But that's not needed... Insurance is already all over you now.
Mostly in past was just a quick questionnaire. Then I was use to be sent to Dr for physical.
Now they contracting their own nurses and labs.
They probably already collecting your dna
Is having a bad recessive a “pre-existing condition”? Or do genotypes form already legally protected classes?
Clearly we need good lawyers here, or careful regulation, or public medical insurance.
I hope it doesn’t go the way of car insurance.
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.
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.
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.
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.
Protection from unlikely events.
>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 of insurance is to cover for unlikely events not expected events (like you needing increase healthcare support as you age)
What? How is it you think insurance companies make money exactly? And why would getting better at predicting risk stop them doing that?
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 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 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.
> 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.
If you look at the graph of waiting times, his tenure is from 2012-2018, and the party is in place from 2010 and quickly has the knives out to ruin the then-recent improvement. https://www.statista.com/chart/27447/nhs-hospital-waiting-ti...
The latest squeeze on "efficiency" (dragging this back into technology) is throwing AI (read: more consultancy contracts) at it.
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.
>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.
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?
- 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.
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.
This is the "encryption should be illegal because I have nothing to hide" level of argumentation.
[1] - https://xkcd.com/538/
[2] - https://en.wikipedia.org/wiki/Rubber-hose_cryptanalysis
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?
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.
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.
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.
Like your faith before 1930s Germany ?
What will you do when they pump your health insurance rate 300% because you have a "bad" DNA ?
Were also the people who have very little understanding of biology and/or privacy. I'd say that covers a good 90% of the population.
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.
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 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.
Job opportunities - oh so sorry you have bipolar gene...
Dictator governments - oh your genes are shit so you are not allowed to have kids.
i avoid dictator governments , which do it anyway already, just based on phenotype
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.
If you are born in one you cannot really escape thats kind of a big design feature you know
https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...
Or bribed politicians to change them?
If they want in, a locked door isn’t stopping them.
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...
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.
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.
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.
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.
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.
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.
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.
Do you understand why discriminating job applicants based on race/sex is illegal but not based on GPA?
One is something you were born with. Another is something that you did.
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.
It's not always that clear e.g. genetic disposition to alcoholism is linked to actual alcoholism and related behaviours.
Is there a point of private health insurance?
Nope, they should not. That's exactly the kind of things that ends up bringing prices up for everyone in the end.
Have you just described socialised healthcare?
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.
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.
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).
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.
Is it assumed that premiums will rise? If you get a package of, say, pension plan your lower life expectancy might lower the premium?
I think this is why certain motorbike cover is actually lower..
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.
https://www.healthcare.gov/how-plans-set-your-premiums
>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.
Also, as an fyi, New York and Vermont do not allow age as a factor in pricing, and Massachusetts restricts the age rating factor to 2 instead of 3.
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.
I actually find it impressive in some sense.
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.
[0] https://www.healthcare.gov/choose-a-plan/catastrophic-health...
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.
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.
Wondering what fraction of smokers know that, and are lying to their doctors about it. Inappropriate testing or treatment being a possible result.
with a reasonable degree of accuracy you can then predict what that person looks like.
epigenetics and other factors make that something like a "best guess" approximation, but it is a good start.
And of course selling DNA data was the idea from the get go...
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.
Or
Just take all the criminal cases in which DNA was used to close cold cases.
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!"
That seems to be a very valid reason to not send someone on a space mission.
Genetics may partly, or even significantly, be destiny.
Making genetic information more widely available has likely benefits far far larger than the costs.
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)
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.
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.
I'm not so sure. Racism was shown to be completely unsupported by science: https://en.wikipedia.org/wiki/UNESCO_statements_on_race?wpro...
There were a couple notable dissenters (some bigwig statistician iirc), but overall it was a clear consensus.
If it is shown that certain genes are causative of violent behavior, the legal situation might not shake out so cleanly. Already the debate has begun: https://www.newyorker.com/magazine/2021/09/13/can-progressiv...
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.
We watched and discussed that movie in my Ethics of Engineering course in university.
Kind of ironic to me that the movie they used to try and teach me how not to use engineering for unethical purposes may be coming true today.
Edit: Wiki page for the movie if anyone's curious: https://en.m.wikipedia.org/wiki/Gattaca
Pretty good movie from what I recall. Some good discussions around ethics that came out of it.
Using computers to generate imagery that is then deployed duplicitously by the person who asked for profit? Yup.
Ubiquitous surveillance and geofencing? Yep.
Artificial constructs for remote deployment of lethal weaponry? Yup.
Poisoning of the well of knowledge to make it more likely that one particular source gets visited rather than another? Yep.
Attempts by monied interests to divest themselves from the implied responsibility to hire in society through increased mechanization? Yep.
To be frank, I'm starting to take Ethics courses as societal statements of intent nowadays.
And guess what, they got bought by MyHeritage
But we hardly need advanced DNA profiling to catch 99.9% of criminals (versus just standard DNA matching).
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.
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.
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.
There's something important there about the nature of the information economy but I can't fully get my mind around it.
People can use some external services like promethease. 23andme is likely to have more thorough data however.
Like decline you health insurance because of high probability of cancer or other issues ?
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.
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.
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.
There are many examples out there of people doing that with cells from tissue, here is one from https://www.wipo.int/wipo_magazine/en/2006/05/article_0008.h...:
"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."
Absent from this statement is that when biotech companies generate revenue from cancer treatments it's probably because they're treating cancer.
What if it got bought by an insurance?
If that changes I'll regret having used 23andme, but so far I'm not worried.
If I throw away a can of paint, then someone finds it and paints a masterpiece, I should have some rights over the painting?
If this was an insurance company I wouldn't have asked this question.
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.
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.
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.
But other than that how will I be abused?
Additionally the incentive for abuse just isn't there. The companies that buy this data don't care about individuals. They want aggregate data.
“Look, GM is getting gov subsidies but we still have to pay for a car!” Not a strong argument indeed.
23andme has democratized DNA testing by making it affordable when the numbers didn’t work. This is remarkable in itself. Kudos to them.
Kind of regret not getting the full work up done at one of places. Maybe would prevented a number of blood clots.
no 'sequences or prints' were ever accessed by the hackers
A lot of people just really don't care about data privacy at all.
I do care. But I still think the benefit outweights the downsides.
There is no situation where they would put people over money and DNA is immutable.
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?
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.
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.
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.
It's never about the data itself, it's about what the worst possible groups can do with it given some nation state backing.
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.
[1] https://nypost.com/2019/11/09/genetic-test-aims-to-predict-a...
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.
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.
Insurrance is.
The bad teeth everyone has in the family?
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.
You are already living in a invisible Gattaca.
So if insurance is using this data it could be pretty rough for the insurers and 23andme.
[0] https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...
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.
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.
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.
The system will prompt the user to decide at enrollment time - they don't have to seek it out, but it certainly is not opt-out.
There's also a few dark patterns to confuse the user to check the box. Put it next to a "Accept T&C" and people think they have to check it.
Or word in a vague way. I doubt it said "We can sell your DNA to 3rd party who can then patent it".
- Police arrest my cousin for getting a paper cut during a home robbery
- Hackers sell my DNA on the internet
- Drugmakers make new and exciting opiates that are especially addictive for me alone
I'm pretty sure there's an uber dystopian horror movie in there somewhere.
- https://www.nationalreview.com/corner/the-coming-threat-of-a...
There's also an outline with references here: https://en.wikipedia.org/wiki/Ethnic_bioweapon
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.
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?
Our so-called "health care system" isn't about your health and welfare at all.
We have a lot of chronic illness these days because treating you forever pays the bills, curing you does not.
Are we sending this data to universities to research optimal nutrition for your genetic profile? Absolutely not.
No money in helping you eat right and live better.
Lots of money in poisoning you with their potions and blaming it on "your condition."
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.
(Insert Spock eyebrow because this concept fails to compute for me.)
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.
It's like saying you need general recommendations for sun exposure before you can research specific recommendations based on skin type/ethnicities.
It's nonsense. Pale-skinned Caucasions need different recommendations from other ethnic groups with more baseline melanin.
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 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.
"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."
It was only later that I realized the privacy implications of what I'd done, and asked them to forget my data and deleted my account.
Is there anything more I can do to protect myself at this point?
https://www.reddit.com/r/23andme/comments/w6knxq/you_can_nev...
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.
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.
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.
win-win everywhere
We should start caring about stuff.
If having the wrong IP address costs $1k extra per month, but only of other people know, then you'd also be more careful about keeping it a secret.
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.
Even so: processing IP-addresses is not allowed in general, in the EU at least. You need permission or a specific, allowed goal.
In the US many states collect DNA samples at birth, as well as for citizens born abroad.
Within 24 hours, before I had mustered up the courage to read my results, I started getting ads for early onset parkinsons meds.
I’ll give you one guess what disease I happen to be extremely genetically predisposed to based on the results of the scan...
https://www.dnasquirrel.com/how-to-protect-your-genetic-priv...
If anonymized, are there issues? If it helps cure disease with anonymous dna, why not?
A company that helps drug company was always the plan.. they just needed that googol of human data.
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.
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.
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.
They have my sympathy, because ToS agreements are BS that even companies don't expect users to read.
23andMe is 1MM Henrietta Lacks.
Seems fine to me?
It is only hard enough for general public to not understand what they are doing.
probably.
what’s the point if there’s not more money to be made? in perpetuity?
from me?
there will be a loyalty program.
it’s fine.
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]"
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?
I unfortunately had a close family member go down this route because he "was curious".
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.
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.
In this case, however, 23andMe seems like the "easy way" since it's paying for itself and is opt-in.