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23andMe to share customer gene data with GlaxoSmithKline for $300M
- derision 7y agoSounds like a good thing to me
- sihoang 7y agoexcept when the treatments are only for those who have a lot money or expensive insurances
- larrik 7y agoThat's how a lot of stuff starts, and then the price goes down while the kinks are worked out. I don't really know what the alternative is here...
- thatfrenchguy 7y ago> and then the price goes down US health insurance costs are up 20% since last year.
- shadowgovt 7y agoThe US system's drug payment policies being broken is somewhat independent of the net utility of developing new drugs for the world at large.
- themaninthedark 7y agoBy how much did the health insurance industry and hospital administration grow?
- 1024core 7y ago> That's how a lot of stuff starts, and then the price goes down while the kinks are worked out. By that logic, Insulin would be dirt cheap today, right? Hint: it is not.
- evandijk70 7y agoCompared to more recent drugs, it is
- bananabreakfast 7y agoHint: being cynical does not help your argument and makes you sound like an asshole
- 1024core 7y agoI was pointing out an obvious counter-example to their point. Telling the truth is not being "cynical".
- simplyinfinity 7y agoMy grandmother is on insulin which the Bulgarian government mostly pays for, the rest is equal to about 50 euro/month or 55 usd. So it's practically free for us. The US has f-ed up healthcare. Change that.
- themaninthedark 7y agoWhat is considered dirt cheap? One kind of insulin can be bought for ~$25 at Walmart. Now, this means that you have to monitor you sugar levels, have a restrictive diet, etc. All things that are very restrictive but better than dying that people did when insulin treatment was first being developed. Now we have newer, reformulated insulin that allows for a more permissive lifestyle. That is expensive. Should the newer stuff be cheaper? It certainly allows for a greater QOL and took time and money to research.
- toomuchtodo 7y agoVote accordingly.
- amanaplanacanal 7y agoExactly. It’s not set in stone that the current health insurance system will last forever.
- deleted 7y ago[deleted]
- evandijk70 7y agoEven if that's the case (it is not in countries that do not have a stupid insurance system like the US) it is better than no treatment at all
- W__S 7y agoI can't tell if that is sarcastic. Are you sure it's not going to the genetic weapons department to develop targeted pathogens that can kill people of a certain group or with certain characteristics, maybe disagreeableness or behaviors that counter the desires of the global demigod neo-aristocracy?
- johnnycab 7y ago>Sounds like a good thing to me Which part sounds good? At it's most simplest, the part where you are not just frittering away your own privacy, but also of those related to you ─ in order to help a Google spin-off based on nepotism, should be reason enough to remain wary ─ until at least some semblance of how to deal with bad practices or egregious cases, is offered by lawmakers on this subject. Tiffany C. Li, a privacy expert and resident fellow at Yale Law School’s Information Society Project, told Tom's Guide. "You are paying to help the company make money with your data" When you give your DNA data to companies like Ancestry.com or 23andMe, you give up not only your own genetic privacy, but that of your entire family
- shadowgovt 7y ago"You are paying to help the company make money with your data" also describes Amazon, Target, and my local gas station. In this day and age, it's hardly an indictment.
- clSTophEjUdRanu 7y agoI'm legally allowed to follow you in public and pick up hair or skin particles that fall off of you.
- johnnycab 7y agoNAL. The act of following someone with the express intent of collecting genetic material and then covertly sending it off to be processed, without any overall consent, might be considered legal in your jurisdiction. However, you will require a rigorously disciplined approach, in order to acquire a non-contaminated sample, not to mention the costs associated with this exercise ─ just in case, you had any designs of putting this idea on a pitch deck. Nevertheless, the above-mentioned debate is moot, especially when you consider the original point(s) made in the article, with regards to the vagaries of explicitly sharing your genetic data without first analysing the implications.
- asdff 7y agoit really wouldn't be hard. person goes to a cafe, train station, and a store. grab probable hair sample from cafe, train station, and store. run pcr on 5 fingerprinting markers (kids do this in ap bio, not hard). if all three samplings match, that's probably your guy.
- crmrc114 7y agoYeah, look- I got my tests back when $99 covered everything. I got my grandparents on each side to spit in tubes for me. I was able to fill in may missing gaps in my genealogy as well as use snp-pedia to look at my own "source code". Its fun. Guess what, my maternal granddad had Parkinson's disease. I hope to god the do something with our data. I knew that $99 was not enough to pay for the processing, storage and hosting of my data. This is the long game for 23 and me. They are a genetic research company. I knew this was something they were going to do and I am happy they are doing it. I hope we can come up with some profitable drugs that will cure some of these more complicated disorders. Just think of what we could do if we could easily treat Alzheimer's or other age related disorders. I am not even talking about cancer or diseases like pendred syndrome that could be possible result in couples hacking nature and removing genetic illness from their kids. I am excited. Dangers, sure. Debate, totally.
- missosoup 7y agoYou are glad a 3rd party is selling your DNA data to a pharmaco giant without express consent because your relative has a disease? What?
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- whatitdobooboo 7y agoI would bet its more secure and scrutinized than your local doctors' office handling of your data
- missosoup 7y agoMy doctor doesn't have my genome. And if they did it would be covered by HIPAA and untouchable by 3rd parties. I'm shocked that it needs to be spelled out on HN, but companies like 23andMe are the epitome of 'you are the product'.
- SloopJon 7y agoThis is the HN post that got the most traction since this was reported in July 2018: https://news.ycombinator.com/item?id=18831370 https://news.ycombinator.com/item?id=18831370
- droithomme 7y ago23andMe's executives still claim that HIPAA doesn't apply to them because in their opinion DNA is not personal medical information. Yet here they are, again selling it for express medical purposes. What's the fine for 5 million intentional HIPAA violations? Doesn't matter. They'll never be held accountable and they know it.
- toomuchtodo 7y agoHIPAA doesn't apply when it's patient directed request (which is how 23andme is structured).
- balls187 7y agoI think you mean consumer generated health data--i.e. like readings from a fitbit heartrate monitor. A patient directed request is absolutely covered by HIPAA.
- toomuchtodo 7y agoThat’s not my understanding based on conversations with an attorney for a project I was involved with for medical research. As always, consult an attorney; don’t take comments in an online forum as gospel, and get whatever sign off you need in writing.
- balls187 7y agoPerhaps I misunderstood what you meant. A patient has no obligation to adhere to HIPAA rules for their own PHI, if that is what you meant. In my medical work, a patient directed request is one where a patient has authorized the transfer or release of their PHI. That transfer/release is absolutely covered by HIPAA. However, if you are a covered entity as defined by HIPAA, you are required to be compliant to the privacy and security rules set forth in HIPAA for PHI data.
- droithomme 7y ago
- larrik 7y ago> "The problem with a lot of these privacy policies and Terms of Service is that no one really reads them," As a long-time 23andMe customer, I remember the opt-in for this feature to be very visible and clear.
- xeromal 7y agoYeah, it was its own page in the sign up process from what I remember.
- lurker458 7y agothey share with GSK even if you opted out, because GSK is part owner.
- Someone1234 7y agoIs that a fact or speculation?
- endorphone 7y agoThis is categorically untrue.
- OrgNet 7y ago> As a long-time 23andMe customer, I remember the opt-in for this feature to be very visible and clear. so it was visible a long time ago....
- devtul 7y agoOn another thread someone was talking about the possibilities of the use of big data on medical records, but people pointed out some restrictions, be it HIPAA or other legislations regarding personal medical information, that would prevent that from happening. TBH I think we benefit from research having access to such data, if it means to open new venues for development of better and cheaper drugs. But it sure leaves me scratching my head, maybe because the way it happened, for profit company selling user DNA data to another for profit without any cashback to the customers.
- JoeAltmaier 7y agoDid they violate their privacy terms? "To give or decline consent for 23andMe Research. By agreeing to the Research Consent Document, Individual Data Sharing Consent Document, or participating in a 23andMe Research Community you can consent to the use of your de-identified data for scientific research purposes."
- W__S 7y agoSo you paid what, $100, to have your DNA tested and logged, directly tied to your person/identity, and you paid that so that Galactic Corporation Alphabet can profit by selling the literal source code to your being to a mega corporation to develop drugs. I am glad that sounds perfectly fine and not at all like a problem.
- blululu 7y agoI would like to add that this is only a small part of the ethically fraught landscape of DNA databases. A proper regulatory framework is needed. Fundamental to the problem is that consent is not necessarily possible with this data because of the high degree of correlation across the population. If a family member decides to get some recreational genetic testing done on themself then they have given consent on your behalf for you to get that testing done as well.
- zymhan 7y ago1.5 year old article
- partiallypro 7y agoI knew they would do something like this when I used 23andMe. I have no problem with it at all. If my DNA helps people well after my death, I'm totally fine with it.
- vallode 7y agoMy main issue here would be the fact the data is being sold to a private pharma company. The 'help' you are talking about might come at a huge cost, this simply helps them develop ever more expensive drugs because they are the only ones holding the data.
- asdff 7y agoprivate pharma companies can already get access to confidential patient information during clinical trials. these protections are established and robust.
- ecf 7y agoThe problem is that you’re not just selling your DNA. You’re selling the DNA of everyone in your entire family. Do you have their consent? Because I’d be really, really pissed off if I found my sister or anytime in my family did this test.
- shadowgovt 7y agoYou don't own your sister's DNA; you don't get to tell her what she does with it.
- wasdfff 7y ago23 and me isnt sequencing anyones DNA...
- mattr47 7y agoThat is not they way the courts see it I believe. My DNA is mine to do with as I please.
- leshow 7y ago
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- methehack 7y agoWhat's preventing a health insurance company from buying 23andMe and doing what they want with the data? (i.e., reducing costs by denying coverage...)
- carbocation 7y agoFor that specific question, the GINA legislation would be a barrier.
- Dirlewanger 7y agoDon't give em ideas man. Next thing you know, your premium goes up by X% because you're predisposed to having an addictive personality and deemed at risk to becoming an alcoholic/opiate/etc. addict.
- sdinsn 7y agoMaking changes to health insurance based on customer genetic information is illegal in the US.
- astura 7y agoFirst off it's illegal for them to use genetic information in health insurance decisions in the US. If it were legal and they did want to do it then why would they need to buy 23andMe to accomplish this? Instead they'd just refuse to insure you without you providing a sample of your DNA.
- chubasco 7y agoOkay for all the people that are talking about how great this is, try this one. What if it turns out a company that they sold all of their data to was later contracted by a government to develop biological weapons? And what if they were suddenly able to target those weapons at specific populations because of all the DNA data they had? Is it still great that they can do this? EDIT: Here is a concrete hypothetical for people that pretend they don't understand what I am talking about... Imagine that [oppressive communist superpower] decided that they were tired of all the criticism they get for their treatment of their [minority Turkic ethnic group originating from and culturally affiliated with the general region of Central and East Asia] population. Rather than overtly mistreat them, they (via third-party contractors) go to the DNA database and find out that members of that population typically share a vulnerability to a dangerous strain of flu to which the general population has a resistance. Rather than overtly oppress them in camps, they could now just custom tailor diseases to handle the "problem" for them, and not have to suffer the PR backlash.
- Accujack 7y agoThat's like saying what if the charity for the homeless to whom people donated money suddenly was found to be a front for a global human trafficking (slave) organization. People would be rightly outraged and angry, but that doesn't mean they made a mistake by giving their money to the charity. Everyone makes judgement calls every day, it's the way the world works.
- t_serpico 7y agoThe difference here is that your input is used to specifically exploit you and others like you.
- Accujack 7y agoSo no difference, then?
- Kliment 7y agoThere's a number of charities that have been exposed like this - care homes run by charities have been exposed for sexual abuse and violence, homeless charities have been exposed for selling data to deportation agencies. The situation there is different because people come to those organizations expecting help in a crisis or untenable situation and end up harmed rather than helped. In the case of people giving their genetic data to a for-profit corporation there is the reasonable expectation that that data is not and was never safe because any such organization is a target to friendly or hostile takeovers by organizations that wish to harm the users. So in one case it's a matter of a broken promise, an organization doing the opposite of what its very purpose of existence is, and in the other case it's just capitalism doing what capitalism does.
- wenc 7y agoI see the word DNA being bandied around here. I wonder if folks here understand the difference between "genotyping" (what 23andme does) and full "sequencing"? [1] Genotyping only returns variants of interest (SNPs) which are specified up front -- not the full sequence. It's a smaller dataset. Sequencing gives you the full genome -- which is currently too expensive to do at consumer scale (though prices are falling). 23andme does not do this. This means the type of genetic research that 23andme can do is somewhat limited. [1] https://customercare.23andme.com/hc/en-us/articles/202904600-Difference-Between-DNA-Genotyping-Sequencing https://customercare.23andme.com/hc/en-us/articles/202904600...
- kevin_thibedeau 7y agoNothing prevents them from reserving interesting samples for full sequencing.
- Symmetry 7y agoNothing prevents the owner of any bathroom you use from doing the same thing except, in both cases, the danger of being found out.
- kevin_thibedeau 7y agoYou would never get a clean sample that way.
- buboard 7y ago> which is currently too expensive to do at consumer scale There are companies that do that for $200, sequencing is the new genotyping! (which I hope will encourage more people to donate their data to open source databases, making the sale of this kind of data unprofitable)
- mjpuser 7y agoThe cheapest I could find in 2019 was $600 by Veritas Genetics for next-gen sequencing. 23andMe is SNP testing as OP said, which is cheaper.
- 2dvisio 7y agoSo many questions... 1. Will 23andme share returns with the people who provided the sample in the long term? 2. Are the drugs that GSK going to produce being charged thousands a vial? 3. what happens to the data of those that are covered by GDPR? Quite sure all the answers will disappoint me.
- marcell 7y ago[2018] tag
- Gatsky 7y agoThis is just like facebook all over again. In the early days people said “so what if they have my data, I can play farmville and chat to my friends”. Fast forward 5 years, everyone starts to realise they’ve given away too much for too little. Except now you also give away data about your children and all your blood relatives as well.
- nshepperd 7y agoGood. This is exactly why I signed up.
- jiveturkey 7y agoPSA: California collects DNA samples of all hospital-born babies, without your consent and without notification. https://www.google.com/search?q=california+dna+collection+babies&rlz=1C5CHFA_enUS879&oq=california+dna+collection+babies&aqs=chrome..69i57j33.4538j0j9&sourceid=chrome&ie=UTF-8 https://www.google.com/search?q=california+dna+collection+ba... You have to write a letter to some authority to have the DNA sample destroyed. You cannot prevent the collection ahead of time, so you have to trust that they have actually destroyed both the sample and any analysis they may have already done on it. We did this, it took about 2 months. We got a letter back that the sample had not been used for any purpose and was destroyed.
- asdff 7y agowhat a waste of a sample. hope your kid doesn't wake up one day at 30 years old with huntingtons.
- cosmodisk 7y agoThe problem with a lot of these privacy policies and Terms of Service is that no one really reads them," Sometimes things get escalated to me when my team can't handle calls with upset customers. Our T&Cs is one page but covers A to Z. Some people openly admit "they don't read that shit" and yet expect you to bend every rule you have in place for them. I'll leave others to comment on moral aspects of this story,as it's got a lot of it on each side of the coin.
- andreilys 7y agoI wonder if those of us whose private data is used to find drugs with billion dollar P&L will receive a royalty check in the mail
- binaryblitz 7y agoThis is from July of 2018. Why is it being reposted now?
- rahuldottech 7y agoWhy should it not? Old articles can still be relevant. That said, it should be tagged "(2018)" as per the guidelines.
- solotronics 7y agoWhat happens if you submit someone elses DNA as yourself to these products?
- manmal 7y agoChances are high nobody will ever find out.
- sdinsn 7y ago(2018)
- pkaye 7y agoAs someone living with various health issues, I'd rather share my gene data and hope that GSK makes a major breathrough on something. Atleast that will push a gold rush for others to search for others cures. Maybe I it will eventually be one that lets me live a normal life.
- stevespang 7y agoHe he, they sold your ass (your data) on down the line, did you really expect anything less . . . I mean after all, they were financed by none other than Google . . . .
- alexnewman 7y agoWTF. I didn't sign off on this. Also who are they using scanning this DNA? Why do I trust them. I guess my DNA is everywhere anyways. I just wish I had more of a say about my genetics. I am so glad 23andme never accepted my DNA
- hailhash 7y agoTheranos 2.0
- damnlies 7y agoSelling. That's called "selling". Sharing for money is called "selling".
- mgamache 7y agoDNA is where technology renders the idea of privacy and ownership moot... If a few people related to me share their data 23andMe has more than enough to convict me of a crime or predict my health to some degree. My DNA is not just mine, but it's really shared property. We really have few social conventions or intuitions to cover this situation (I think).
- Eleopteryx 7y ago>My DNA is not just mine, but it's really shared property. But you didn't get a cut of the $300m.
- mastrsushi 7y agoWhy should we be concerned with this?
- christanah 7y agoi was diagnosed with Parkinson's disease nearly 4 years ago, at 51. I had a stooped posture, tremors, muscle stiffness, sleeplessness, slow movement. I was placed on Sinemet for 7 months and then Sifrol and Rotigotine was introduced which replaced the Sinemet but I had to stop due to side effects. Last year, I started on Parkinsons disease herbal treatment from Akanni Herbal Clinic, this natural herbal treatment totally reversed my Parkinsons disease. Visit www. akanniherbalcentre .com The treatment worked incredibly for my Parkinsons disease, i have a total decline in symptoms including tremors, stiffness, slow movement and others.
- DrivebyPoster 7y agoKnowledge is power, now couple this with modern medical research, advertising, aggregate private consumer data, public official records, or basically everything that is already being collected from us. This is a weapon. They don't want eugenics or even want to treat us. They want to administer us like cattle into global depopulation programs while only elite practices eugenics. Now since they have more genetic data they will be able to have raw correlative power on our weaknesses, behaviorisms, and the like. This will help form their final game plan.
- snowcat8 7y agoScrew them
- devy 7y agoThis is an old news. Can mod change the title to add (2018) suffix?
- christanah 7y agoi was diagnosed with Parkinson's disease nearly 4 years ago, at 51. I had a stooped posture, tremors, muscle stiffness, sleeplessness, slow movement. I was placed on Sinemet for 7 months and then Sifrol and Rotigotine was introduced which replaced the Sinemet but I had to stop due to side effects. Last year, I started on Parkinsons disease herbal treatment from Akanni Herbal Clinic, this natural herbal treatment totally reversed my Parkinsons disease. Visit www. akanniherbalcentre .com The treatment worked incredibly for my Parkinsons disease, i have a total decline in symptoms including tremors, stiffness, slow movement and others.
- christanah 7y agoAfter my PD diagnosis, I started out taking only Azilect, then Mirapex and sinemet as the disease progressed but didn’t help much. In July last year, I started on PARKINSON DISEASE TREATMENT PROTOCOL from Akanni herbal centre (www. akanniherbalcentre .com ). Few months into the treatment, I made a significant recovery. After I completed the recommended treatment plan, almost all my symptoms were gone, had wonderful improvement with my movement and tremors . Its been 6 months since I completed the treatment, I live a better life