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Yeah, 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

Yeah, 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 ago
You 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 ago
  I would bet its more secure and scrutinized than your local doctors' office handling of your data
  - missosoup 7y ago
    My 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'.
    - toomuchtodo 7y ago
      I don't share my genome with my doctor because they don't need it (yet; also, EPIC and Apple Health don't really support OAuth to 23andme for grabbing the raw file). I have used 23andme, as well as my entire family, and have opted us all into their research. We make this choice voluntarily and in an informed manner. I am willing to trade genetic privacy (which is tenuous at best, I leave DNA everywhere as a human) for progress. Same reason my genome (as well as a sibling's) is public on Harvard's Personal Genome Project. I have a shelf life, but research lives on. I don't believe myself to have been duped. I've made concessions based on priorities. Would I prefer this work be done, publicly funded, by the NIH and other non-profit researchers? Absolutely. Am I willing to wait for perfection? Absolutely not. Federal law currently protects your DNA data from employers and insurance companies. If you find that to be insufficient, run for office. Disclaimer: Interviewed and was offered a role at 23andme a lifetime ago (2011), no other affiliation besides being a satisfied customer.
      - missosoup 7y ago
        If you want progress give your genome to your local uni so they can pass it on to researchers, not to a comic book badguy profit seeking pharma giant like GSK who will totally sue the shit out of anyone else who uses it without their go-ahead.
        toomuchtodo 7y ago
        I want results, not someone who has to churn out papers to meet their academic requirements. Go where the resources are.
        missosoup 7y ago
        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC421770/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC421770/ Yeah GSK is definitely where the resources are. To circumvent regulations and laws. Fuck actual research right?
  - hello_friendos 7y ago
    How unbelievably naive.
- jryan49 7y ago
  "Wojcicki stressed that all customers involved had agreed to let their DNA be used for medical research when they signed up for the tests." I've used 23andme and it's VERY clear when you choose to share or not share your DNA.
  - missosoup 7y ago
    Yes but no. https://time.com/5349896/23andme-glaxo-smith-kline/ https://time.com/5349896/23andme-glaxo-smith-kline/ While 23andMe has technically adhered to the original terms of service, they've been sharing your data without your consent with their new parent firms like pharma giant GSK (the same one described in this article) which purchased partial ownership of the company and therefore ownership of the data. You see, giving data to your parent firm is not technically giving data to a third party. This was the business model all along. The 'customers' were the product, and the real customers were pharmaco. Getting the products (you) to pay for the cost of their own sequencing so the data is effectively free was a stroke of genius. Not only are you giving away incredibly valuable data about yourself only a tiny fraction of which is returned back to you in the form of a report, you're paying for the cost to collect it. It's brilliant. You've been duped by the dupe that everyone saw coming.
    - mywittyname 7y ago
      > You've been duped by the dupe that everyone saw coming. Not only that, this is one of the benevolent aspects of 23&Me that people saw coming. It's only a matter of time before this information trickles to insurance companies.
      - missosoup 7y ago
        But wait, it gets better. The data is now permanently out there which means it's only a question of time until it leaks to insurance companies and bad actors, but the data is not only about the individual who submitted their DNA but everyone related to them. I'm sure GP's children will love them for selling out their data to future employers and insurers.
- shadowgovt 7y ago
  I can't answer for the original poster, but were it me, yes. I'm certainly not doing anything to cure that disease. Strict privacy advocates aren't doing something to cure that disease (I guess they might be, but how would I know, they don't talk about themselves much ;) ). I value a cure for Parkinson's more than I value my privacy. If selling the DNA I provided as part of a research dataset (that I provided without knowing who would be doing the research, but knowing it'd be someone because that's how research works) cures Parkinson's, I'm on board.
  - hedvig 7y ago
    And what percentage of your net-worth and/or your insurers bearance would you be willing to commit to the yearly treatment they'll come up with (not a cure)?
    - pertymcpert 7y ago
      I guess everything because Parkinsons is a catastrophic illness from a quality of life perspective.
    - shadowgovt 7y ago
      (a) I have no reason to believe at this point, a priori, that Parkinson's isn't curable (Clarke's First Law) (b) To address that issue, I vote for politicians who advocate for radically restructuring how healthcare is paid for in the US to minimize incentives to gouge unlucky individuals
    - mortenjorck 7y ago
      The idea that pharmaceutical companies focus on treatment at the expense of cures is inaccurate. Not because they’ve decided to put the greater good ahead of profits, but because they realized they could price breakthrough cures to match the customer LTV of chronic treatments. Novartis recently won approval for a cure to a rare genetic disorder, priced at two million dollars: https://www.reuters.com/article/us-novartis-genetherapy/novartis-2-million-gene-therapy-for-rare-disorder-is-worlds-most-expensive-drug-idUSKCN1SU1ZP https://www.reuters.com/article/us-novartis-genetherapy/nova...
- danudey 7y ago
  Personally, I can't wait for the inevitable medical breakthroughs discovered through the service that we paid for, that GSK will sell back to us for thousands of dollars per treatment. There's something so purely dystopian about paying a company to collect our genomic data, which then helps to create medical breakthroughs that none of us will be able to afford.
  - downvoted 7y ago
    And though the idea is tricky, commercializing our genome is no longer about "hey, the next R&D breakthrough will come from your genome." It's about making sure that the first humans to create such breakthroughs can get rich off the money it pays for them. This is why it's so important that companies refrain from selling our genomes to biotech companies.
  - deleted 7y ago
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  - trixie_ 7y ago
    Wouldn't you be paying for all the R&D that was required after using the genetic info to develop a treatment. If the treatment ends up costing $100k, the genetic info you provided resulted in a discount from infinite dollars to an actual finite amount. That's a pretty big discount.
nabdab 7y ago
Sounds like you would give consent if asked, and I applaud you for that. Myself I gladly donate blood for free to help others. I don’t however feel that either of those willful good deeds should be viewed as arguments supporting that people should have their blood extracted or data sold without consent.
- DangerousPie 7y ago
  23&me doesn't share data without consent. They explictly tell you that they'd like to use your data for research and ask you to opt in.
  - missosoup 7y ago
    This is false. 23andMe shares data with invested parent organisations regardless of consent, and is not required to disclose the fact because they're legally not 3rd parties. See https://news.ycombinator.com/reply?id=21815295&goto=item%3Fid%3D21814595%2321815295 https://news.ycombinator.com/reply?id=21815295&goto=item%3Fi...
    - burnte 7y ago
      Your use of their program is consent, they tell you when you get the kit.
      - taneq 7y ago
        There's a pretty significant difference between "when you use their service you can opt-in to have your data added to the dataset" and "buried in the EULA is a clause saying they own your genes."
      - Nullabillity 7y ago
        Consent is not freely given if it's a requirement for something else.
        7y ago
hrktb 7y ago
How do you see the risk of the most greedy company bidding the most to get privileged access to the data, and coming up with a cure that out-prices you or your family if you ever end up hit by the disease ? For me this is the simulation that gives me pause. I also guess that research might not just happen on itself, but can't help to wonder what better ways they could be to avoid getting cornered at the end.
- drusepth 7y ago
  >How do you see the risk of the most greedy company bidding the most to get privileged access to the data, and coming up with a cure that out-prices you or your family if you ever end up hit by the disease? Is that preferable to an alternative where no company can bid on such data, and therefore a cure either never exists or is delayed N years (where N is probably significant)? Consider also that all medicine often starts prohibitively expensive to offset R&D, and predictably lowers in cost over time.
  - gowld 7y ago
    "Mylan now offers the authorized generic for Epipen for roughly $150 to $350 for a two-pack" (which expires after 1 year.)
themagician 7y ago
Same here, G2019S brother.
shripadk 7y ago
> Guess what, my maternal granddad had Parkinson's disease > Just think of what we could do if we could easily treat Alzheimer's or other age related disorders If only scientists focused their research on Medical Cannabis which is time and again showing positive results on plenty of patients afflicted with Alzheimer's and Parkinson's. My grandpa had Parkinson's too. I wish I or my family knew of Medical Cannabis and the positive effects of CBD back then. It makes me angry that this naturally occurring plant was banned by the CIA and India followed suit when Cannabis (called Vijaya in Sanskrit) was used in Ayurveda for thousands of years. We discarded a medicine that was working perfectly fine for chemicals made artificially by Big Pharma. Now people have no choice and have to resort to going for allopathy when an alternative natural medicine exists but would invite prison time if you use it. No one would dare to break the law. And when accompanied by social stigma in using it you have this fine concoction of guilt for breaking the law and anger, sadness at the sheer ignorance of society.
trianglem 7y ago
This is why when I sent in my sample I used a fake name and a disposable debit card for the purchase. I also got it back when it was $99 without a subscription and I hope those steps are enough for them to not be able to connect my DNA data back to me. Guess my tinfoil hat worked out in this case!
- markdown 7y ago
  That works until a close relative hands over their DNA to 23andMe using their real name.
  - trianglem 7y ago
    Never considered this but sadly you’re right.
paggle 7y ago
You knew all that stuff, great. What about the people who didn’t?
bjornjaja 7y ago
Look at what China is doing with peoples DNA—it’s creepy to imagine what the possible outcomes will be with machine learning etc. Meanwhile I submitted my DNA to ancestry and learned interesting things about my family. Anything may be used for good or evil.
kilo_bravo_3 7y ago
We are on the verge of a future where automated systems trawl through exabytes of genetic data, lazily analyzing it and spitting out promising results for further, focused, research. The first steps are being taken today with similar systems for automated drug discovery, and the same amount of effort should be thrown into genetic research. Not only do I want my DNA in a database making up a genetic version of DigitalCorpora.org, freely available to researchers (commercial and non-profit alike), I also want it available to law enforcement so that when a familial match pops up for a sample in a rape kit or crime scene they can catch the person. If a critical mass of genetic information could be gathered and sufficient computing power thrown at it, live-saving discoveries could become so routine they aren't even reported on anymore. I am excited, too.
- gowld 7y ago
  It can also jail you for a crime you didn't commit. amp.theatlantic.com/amp/article/408709/ Or otherwise criminalize your existence https://en.wikipedia.org/wiki/One-drop_rule https://en.wikipedia.org/wiki/One-drop_rule
- thedudeabides5 7y ago
  Know someone who's trying to do this for rape kits, and a couple overzealous state AGs are trying to shut them down (unsuccessfully mind you). Funny we don't see any subpoenas here while a private company openly trumphs monetizing your DNA data, but threaten the govt 'process' and whamo! lawyers out the wazoo
drusepth 7y ago
I'm really shocked at some of the responses you're getting. I'm in a similar situation, except for Alzheimer's. I signed up to 23andme (and several other genome companies) explicitly to give them more data for their research. The product was kind of cool (I connected my mom with a long-lost brother!) but the real product is research and what comes from that research. There are dangers if it's misused, sure, but the benefits for literally everyone on the planet dwarfs even the worst, least-likely dangers, IMO.
- dpcan 7y ago
  Sorry, but this is the classic "I have nothing to hide" argument in regards to privacy. If they want to market their services as "donate your DNA for research" and then, as a side-note, we'll send you back some fun details about you... Fine. But right now, they sell it as a way to know about yourself, your family, genes, etc. Then millions of people wake up to the news to find out that their DNA was handed over to a pharma company.
  - drusepth 7y ago
    It shouldn't be controversial to say that I value everyone on the planet having a higher quality of life more than I value a small subset of people's worry over losing privacy to a company that they not only willingly gave their DNA to, but also opted in during the signup process to use that DNA for health research. If they feel fooled for whatever reason (I assume because that research is being done by another company instead of 23andme directly) and are now claiming they've lost some semblance of privacy over deidentified data they already handed over, that pales in comparison to lifesaving cures that are enabled and made more likely by sharing such data. Quality of life for everyone > pedantics of what exact things you're opting into when you give your DNA to a genetic research company that dedicates a whole page in the signup flow to using your DNA for lifesaving research and cures.
    - dkonofalski 7y ago
      >but also opted in during the signup process to use that DNA for health research. That is not the same thing as selling data to third-parties. Especially considering that 23andMe asks users questions and then shows results based on correlations, it's too easy for users to understand "opting in for health research" as research being done by 23andMe and not by a third-party.
delfinom 7y ago
>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. Sadly because of the state of America, your insurance company once it gets your genetic data is going to make you sorely regret it.
- dekhn 7y ago
  it's illegal for health insurers to discriminate using genetic information: https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination https://www.genome.gov/about-genomics/policy-issues/Genetic-... ("Specifically, health insurers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions").
  - rublev 7y ago
    Just because it exists in some 10,000 page backoffice document doesn't mean that's how reality is going to play out. They will find a way.
  - lostcolony 7y ago
    Currently it is. That can change.
    - dekhn 7y ago
      Sure, but it's a law, and any change like that would be major national news, debated extensively in Congress, and then, if turned into a new law, would roll out over years. And it's unlikely it would be passed as a law, because (currently) most people favor privacy for their genomic information. Personally, I can see the value in allowing health insurance to access genomic information. Assuming it truly correlates with health outcomes, the data would be valuable in accurately personalizing contracts. I believe other indicators are already used.
      - 7y ago
Bombthecat 7y ago
Until the pill costs one million and you get nothing, or even, if you need it you can't afford it.
goatinaboat 7y ago
Guess what, my maternal granddad had Parkinson's disease. I hope to god the do something with our data Guess what, they will sell it to insurance companies who will gouge you for the rest of your life. That was always the endgame.
- peteretep 7y ago
  > they will sell it to insurance companies who will gouge you for the rest of your life Where do you live that this would be legal?
jariel 7y ago
"I knew that $99 was not enough to pay for the processing, storage and hosting of my data." Sure it is. Definitely the 'hosting and storage' part, which they wouldn't need to do if you weren't the product. Though there are issues with privacy, I think we should remember that there's a lot of good that can come with this if cures are made available. It's a really weird route that capitalism has forged on this one. It'd be nice to see public agencies get their act together on these kinds of things. Imagine if a university were able to do this - and all the data were made public to any researcher, properly anonymised.
amiga_500 7y ago
What if GSK share this with a health insurance company who want it "for research" and you then cannot get insurance?
seganddr 7y ago
It's interesting for a new account to have such a strongly opinioned, eloquent, and top voted comment on such a controversial topic.
- peu4000 7y ago
  Do you find it similarly interesting that a 5 year old account with 3 other posts and a few comments posted a 1.5 year old article and managed to get over 300 upvotes on it?
  - seganddr 7y ago
    I had never considered those metrics as a possible source of data. I'll have to think about it. Thank you.
coleifer 7y ago
Nice advertisement / damage control.
badrabbit 7y ago
I don't get it, are you being naive or ignorant? Are you not aware of how much genetic science and ML have already been abused in the past? Are you also not aware of how much the laws and public understanding of the techs and their implications is severely lacking? Cure parkinsons but hey systemic eugenics no big deal? I mean,come on...we live in quite the evil world with all sorts of people that will gladly misuse this data and the tech to make inference out of it. I am all for finding cures but the unwitting public needs to be protected. Most people assume there is no way a legit company would do something terribly evil.
- wahern 7y ago
  > Most people assume there is no way a legit company would do something terribly evil. Are you kidding? Cynicism is endemic in the U.S. today; likewise for anti-corporatism. You can see it in the comments. Personally, I'm in the same boat as the OP: I was a very early 23&Me customer and persuaded many family members to also participate, with the knowledge that 23&Me would monetize the data through research. They never claimed to be a non-profit. They were relatively transparent about their opt-in and opt-out policies, though after the FDA debacle their "simplified" website became significantly more complex and opaque. I also participated in a Kaiser Permanente whole genome sequencing research program, donated my blood samples, and then never heard anything ever again. I hope they're doing good science, especially because donating my whole genome is significantly more invasive from a privacy perspective than a few thousand SNPs. If we sat around and waited for the perfect environment that addressed everybody's concerns, we'll be waiting forever. In the meantime, the less selfish among us are putting our own privacy at risk for the greater good. And the more of us that do that, the more political pressure there will be to sustain and expand existing legal protections prohibiting discrimination. Not only am I glad 23&Me is selling the data (and this isn't the first time), I hope that overtime they'll have enough income that they can start sharing much of their data for free with schools and labs around the world. The latter may never come to pass, but I can't let perfection be the enemy of the good. And I won't let fear and uncertainty turn me into a perpetual privacy victim. EDIT: I just received an e-mail from KP regarding their research project. It's the first I've noticed, but judging by my e-mail log they seem to have sent a handful over the past several years which I apparently deleted as spam. Here's the project website: https://researchbank.kaiserpermanente.org/ https://researchbank.kaiserpermanente.org/
laurencerowe 7y ago
> I knew that $99 was not enough to pay for the processing, storage and hosting of my data. Genotyping is not full sequencing. The files produced are not that large. According to this press release volume pricing is below $40 / sample. https://www.businesswire.com/news/home/20160616005665/en/Illumina-Announces-Initial-Customer-Orders-Global-Screening https://www.businesswire.com/news/home/20160616005665/en/Ill...
mistersquid 7y ago
This genetic data will be used by 3rd parties not (only?) altruistically but to maximize profits. Any products developed using this genetic data will likely have profit as their primary motive. Wanting to accelerate the development of novel drugs and therapies to treat disease is great. But rather than giving a private company carte blanche to share data with third parties trusting (hoping?) that the outcome will benefit humanity, it would be better first to establish a sensible regulatory framework around genetic information and its uses by private companies and the governnment.
- alexfromapex 7y ago
  Can’t upvote this enough
- killjoywashere 7y ago
  > it would be better first to establish a sensible regulatory framework The new common rule provides for just such a thing called broad consent, which requires tracking patient consent in a fine-grained and revokable way. Interestingly, about the time it came into effect, I heard about a new start-up supported by George Church, called Nebula, which provides just such a consent service using a blockchain. So, the regulatory framework exists, and a product to implement that is on the market. And this stuff was in discussion for better part of a decade, so it's not like this just snuck up on people. https://blog.nebula.org/anonymous-sequencing/ https://blog.nebula.org/anonymous-sequencing/
- travisoneill1 7y ago
  Of course their motive is not altruistic, and what does it matter anyway? They won't make money if the outcome of the research isn't beneficial. What use would a bunch of government bureaucracy be?
  - gowld 7y ago
    amp.cnn.com/cnn/2019/12/17/us/purdue-pharma-sackler-family-10-billion-withdrawals/index.html
- marticode 7y ago
throwawaybbb 7y ago
I hope you enjoy being uninsurable for Parkinson's in the future.
- NotSammyHagar 7y ago
  My grandfather had parkinson, I have wondered about all this genetic testing. I almost bought those kits when they were alive. I was worried about future negatives, never imagined the law enforcement 'find relatives' thing that happens now.
Antoninus 7y ago
These are my sentiments as well. My wife and I did this before our first child. The data is kept in both a secure server and physical thumb drive with reserved domains, personal email adress with their legal names. I wish I had this type of data growing up, I’m sure I would have at least eaten better. All I got was, grandpa died of a heart attack and grandma died of cancer. Hopefully the kids find it useful.

missosoup 7y ago

You 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 ago
I would bet its more secure and scrutinized than your local doctors' office handling of your data
- missosoup 7y ago
  My 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'.
  - toomuchtodo 7y ago
    I don't share my genome with my doctor because they don't need it (yet; also, EPIC and Apple Health don't really support OAuth to 23andme for grabbing the raw file). I have used 23andme, as well as my entire family, and have opted us all into their research. We make this choice voluntarily and in an informed manner. I am willing to trade genetic privacy (which is tenuous at best, I leave DNA everywhere as a human) for progress. Same reason my genome (as well as a sibling's) is public on Harvard's Personal Genome Project. I have a shelf life, but research lives on. I don't believe myself to have been duped. I've made concessions based on priorities. Would I prefer this work be done, publicly funded, by the NIH and other non-profit researchers? Absolutely. Am I willing to wait for perfection? Absolutely not. Federal law currently protects your DNA data from employers and insurance companies. If you find that to be insufficient, run for office. Disclaimer: Interviewed and was offered a role at 23andme a lifetime ago (2011), no other affiliation besides being a satisfied customer.
    - missosoup 7y ago
      If you want progress give your genome to your local uni so they can pass it on to researchers, not to a comic book badguy profit seeking pharma giant like GSK who will totally sue the shit out of anyone else who uses it without their go-ahead.
      - toomuchtodo 7y ago
        I want results, not someone who has to churn out papers to meet their academic requirements. Go where the resources are.
        missosoup 7y ago
        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC421770/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC421770/ Yeah GSK is definitely where the resources are. To circumvent regulations and laws. Fuck actual research right?
- hello_friendos 7y ago
  How unbelievably naive.
jryan49 7y ago
"Wojcicki stressed that all customers involved had agreed to let their DNA be used for medical research when they signed up for the tests." I've used 23andme and it's VERY clear when you choose to share or not share your DNA.
- missosoup 7y ago
  Yes but no. https://time.com/5349896/23andme-glaxo-smith-kline/ https://time.com/5349896/23andme-glaxo-smith-kline/ While 23andMe has technically adhered to the original terms of service, they've been sharing your data without your consent with their new parent firms like pharma giant GSK (the same one described in this article) which purchased partial ownership of the company and therefore ownership of the data. You see, giving data to your parent firm is not technically giving data to a third party. This was the business model all along. The 'customers' were the product, and the real customers were pharmaco. Getting the products (you) to pay for the cost of their own sequencing so the data is effectively free was a stroke of genius. Not only are you giving away incredibly valuable data about yourself only a tiny fraction of which is returned back to you in the form of a report, you're paying for the cost to collect it. It's brilliant. You've been duped by the dupe that everyone saw coming.
  - mywittyname 7y ago
    > You've been duped by the dupe that everyone saw coming. Not only that, this is one of the benevolent aspects of 23&Me that people saw coming. It's only a matter of time before this information trickles to insurance companies.
    - missosoup 7y ago
      But wait, it gets better. The data is now permanently out there which means it's only a question of time until it leaks to insurance companies and bad actors, but the data is not only about the individual who submitted their DNA but everyone related to them. I'm sure GP's children will love them for selling out their data to future employers and insurers.
shadowgovt 7y ago
I can't answer for the original poster, but were it me, yes. I'm certainly not doing anything to cure that disease. Strict privacy advocates aren't doing something to cure that disease (I guess they might be, but how would I know, they don't talk about themselves much ;) ). I value a cure for Parkinson's more than I value my privacy. If selling the DNA I provided as part of a research dataset (that I provided without knowing who would be doing the research, but knowing it'd be someone because that's how research works) cures Parkinson's, I'm on board.
- hedvig 7y ago
  And what percentage of your net-worth and/or your insurers bearance would you be willing to commit to the yearly treatment they'll come up with (not a cure)?
  - pertymcpert 7y ago
    I guess everything because Parkinsons is a catastrophic illness from a quality of life perspective.
  - shadowgovt 7y ago
    (a) I have no reason to believe at this point, a priori, that Parkinson's isn't curable (Clarke's First Law) (b) To address that issue, I vote for politicians who advocate for radically restructuring how healthcare is paid for in the US to minimize incentives to gouge unlucky individuals
  - mortenjorck 7y ago
    The idea that pharmaceutical companies focus on treatment at the expense of cures is inaccurate. Not because they’ve decided to put the greater good ahead of profits, but because they realized they could price breakthrough cures to match the customer LTV of chronic treatments. Novartis recently won approval for a cure to a rare genetic disorder, priced at two million dollars: https://www.reuters.com/article/us-novartis-genetherapy/novartis-2-million-gene-therapy-for-rare-disorder-is-worlds-most-expensive-drug-idUSKCN1SU1ZP https://www.reuters.com/article/us-novartis-genetherapy/nova...
danudey 7y ago
Personally, I can't wait for the inevitable medical breakthroughs discovered through the service that we paid for, that GSK will sell back to us for thousands of dollars per treatment. There's something so purely dystopian about paying a company to collect our genomic data, which then helps to create medical breakthroughs that none of us will be able to afford.
- downvoted 7y ago
  And though the idea is tricky, commercializing our genome is no longer about "hey, the next R&D breakthrough will come from your genome." It's about making sure that the first humans to create such breakthroughs can get rich off the money it pays for them. This is why it's so important that companies refrain from selling our genomes to biotech companies.
- deleted 7y ago
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- trixie_ 7y ago
  Wouldn't you be paying for all the R&D that was required after using the genetic info to develop a treatment. If the treatment ends up costing $100k, the genetic info you provided resulted in a discount from infinite dollars to an actual finite amount. That's a pretty big discount.

nabdab 7y ago

Sounds like you would give consent if asked, and I applaud you for that. Myself I gladly donate blood for free to help others. I don’t however feel that either of those willful good deeds should be viewed as arguments supporting that people should have their blood extracted or data sold without consent.

DangerousPie 7y ago
23&me doesn't share data without consent. They explictly tell you that they'd like to use your data for research and ask you to opt in.
- missosoup 7y ago
  This is false. 23andMe shares data with invested parent organisations regardless of consent, and is not required to disclose the fact because they're legally not 3rd parties. See https://news.ycombinator.com/reply?id=21815295&goto=item%3Fid%3D21814595%2321815295 https://news.ycombinator.com/reply?id=21815295&goto=item%3Fi...
  - burnte 7y ago
    Your use of their program is consent, they tell you when you get the kit.
    - taneq 7y ago
      There's a pretty significant difference between "when you use their service you can opt-in to have your data added to the dataset" and "buried in the EULA is a clause saying they own your genes."
    - Nullabillity 7y ago
      Consent is not freely given if it's a requirement for something else.
      - 7y ago

hrktb 7y ago

How do you see the risk of the most greedy company bidding the most to get privileged access to the data, and coming up with a cure that out-prices you or your family if you ever end up hit by the disease ? For me this is the simulation that gives me pause. I also guess that research might not just happen on itself, but can't help to wonder what better ways they could be to avoid getting cornered at the end.

drusepth 7y ago
>How do you see the risk of the most greedy company bidding the most to get privileged access to the data, and coming up with a cure that out-prices you or your family if you ever end up hit by the disease? Is that preferable to an alternative where no company can bid on such data, and therefore a cure either never exists or is delayed N years (where N is probably significant)? Consider also that all medicine often starts prohibitively expensive to offset R&D, and predictably lowers in cost over time.
- gowld 7y ago
  "Mylan now offers the authorized generic for Epipen for roughly $150 to $350 for a two-pack" (which expires after 1 year.)

themagician 7y ago

Same here, G2019S brother.

shripadk 7y ago

> Guess what, my maternal granddad had Parkinson's disease > Just think of what we could do if we could easily treat Alzheimer's or other age related disorders If only scientists focused their research on Medical Cannabis which is time and again showing positive results on plenty of patients afflicted with Alzheimer's and Parkinson's. My grandpa had Parkinson's too. I wish I or my family knew of Medical Cannabis and the positive effects of CBD back then. It makes me angry that this naturally occurring plant was banned by the CIA and India followed suit when Cannabis (called Vijaya in Sanskrit) was used in Ayurveda for thousands of years. We discarded a medicine that was working perfectly fine for chemicals made artificially by Big Pharma. Now people have no choice and have to resort to going for allopathy when an alternative natural medicine exists but would invite prison time if you use it. No one would dare to break the law. And when accompanied by social stigma in using it you have this fine concoction of guilt for breaking the law and anger, sadness at the sheer ignorance of society.

trianglem 7y ago

This is why when I sent in my sample I used a fake name and a disposable debit card for the purchase. I also got it back when it was $99 without a subscription and I hope those steps are enough for them to not be able to connect my DNA data back to me. Guess my tinfoil hat worked out in this case!

markdown 7y ago
That works until a close relative hands over their DNA to 23andMe using their real name.
- trianglem 7y ago
  Never considered this but sadly you’re right.

paggle 7y ago

You knew all that stuff, great. What about the people who didn’t?

bjornjaja 7y ago

Look at what China is doing with peoples DNA—it’s creepy to imagine what the possible outcomes will be with machine learning etc. Meanwhile I submitted my DNA to ancestry and learned interesting things about my family. Anything may be used for good or evil.

kilo_bravo_3 7y ago

We are on the verge of a future where automated systems trawl through exabytes of genetic data, lazily analyzing it and spitting out promising results for further, focused, research. The first steps are being taken today with similar systems for automated drug discovery, and the same amount of effort should be thrown into genetic research. Not only do I want my DNA in a database making up a genetic version of DigitalCorpora.org, freely available to researchers (commercial and non-profit alike), I also want it available to law enforcement so that when a familial match pops up for a sample in a rape kit or crime scene they can catch the person. If a critical mass of genetic information could be gathered and sufficient computing power thrown at it, live-saving discoveries could become so routine they aren't even reported on anymore. I am excited, too.

gowld 7y ago
It can also jail you for a crime you didn't commit. amp.theatlantic.com/amp/article/408709/ Or otherwise criminalize your existence https://en.wikipedia.org/wiki/One-drop_rule https://en.wikipedia.org/wiki/One-drop_rule
thedudeabides5 7y ago
Know someone who's trying to do this for rape kits, and a couple overzealous state AGs are trying to shut them down (unsuccessfully mind you). Funny we don't see any subpoenas here while a private company openly trumphs monetizing your DNA data, but threaten the govt 'process' and whamo! lawyers out the wazoo

drusepth 7y ago

I'm really shocked at some of the responses you're getting. I'm in a similar situation, except for Alzheimer's. I signed up to 23andme (and several other genome companies) explicitly to give them more data for their research. The product was kind of cool (I connected my mom with a long-lost brother!) but the real product is research and what comes from that research. There are dangers if it's misused, sure, but the benefits for literally everyone on the planet dwarfs even the worst, least-likely dangers, IMO.

dpcan 7y ago
Sorry, but this is the classic "I have nothing to hide" argument in regards to privacy. If they want to market their services as "donate your DNA for research" and then, as a side-note, we'll send you back some fun details about you... Fine. But right now, they sell it as a way to know about yourself, your family, genes, etc. Then millions of people wake up to the news to find out that their DNA was handed over to a pharma company.
- drusepth 7y ago
  It shouldn't be controversial to say that I value everyone on the planet having a higher quality of life more than I value a small subset of people's worry over losing privacy to a company that they not only willingly gave their DNA to, but also opted in during the signup process to use that DNA for health research. If they feel fooled for whatever reason (I assume because that research is being done by another company instead of 23andme directly) and are now claiming they've lost some semblance of privacy over deidentified data they already handed over, that pales in comparison to lifesaving cures that are enabled and made more likely by sharing such data. Quality of life for everyone > pedantics of what exact things you're opting into when you give your DNA to a genetic research company that dedicates a whole page in the signup flow to using your DNA for lifesaving research and cures.
  - dkonofalski 7y ago
    >but also opted in during the signup process to use that DNA for health research. That is not the same thing as selling data to third-parties. Especially considering that 23andMe asks users questions and then shows results based on correlations, it's too easy for users to understand "opting in for health research" as research being done by 23andMe and not by a third-party.

delfinom 7y ago

>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. Sadly because of the state of America, your insurance company once it gets your genetic data is going to make you sorely regret it.

dekhn 7y ago
it's illegal for health insurers to discriminate using genetic information: https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination https://www.genome.gov/about-genomics/policy-issues/Genetic-... ("Specifically, health insurers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions").
- rublev 7y ago
  Just because it exists in some 10,000 page backoffice document doesn't mean that's how reality is going to play out. They will find a way.
- lostcolony 7y ago
  Currently it is. That can change.
  - dekhn 7y ago
    Sure, but it's a law, and any change like that would be major national news, debated extensively in Congress, and then, if turned into a new law, would roll out over years. And it's unlikely it would be passed as a law, because (currently) most people favor privacy for their genomic information. Personally, I can see the value in allowing health insurance to access genomic information. Assuming it truly correlates with health outcomes, the data would be valuable in accurately personalizing contracts. I believe other indicators are already used.
    - 7y ago

Bombthecat 7y ago

Until the pill costs one million and you get nothing, or even, if you need it you can't afford it.

goatinaboat 7y ago

Guess what, my maternal granddad had Parkinson's disease. I hope to god the do something with our data Guess what, they will sell it to insurance companies who will gouge you for the rest of your life. That was always the endgame.

peteretep 7y ago
> they will sell it to insurance companies who will gouge you for the rest of your life Where do you live that this would be legal?

jariel 7y ago

"I knew that $99 was not enough to pay for the processing, storage and hosting of my data." Sure it is. Definitely the 'hosting and storage' part, which they wouldn't need to do if you weren't the product. Though there are issues with privacy, I think we should remember that there's a lot of good that can come with this if cures are made available. It's a really weird route that capitalism has forged on this one. It'd be nice to see public agencies get their act together on these kinds of things. Imagine if a university were able to do this - and all the data were made public to any researcher, properly anonymised.

amiga_500 7y ago

What if GSK share this with a health insurance company who want it "for research" and you then cannot get insurance?

seganddr 7y ago

It's interesting for a new account to have such a strongly opinioned, eloquent, and top voted comment on such a controversial topic.

peu4000 7y ago
Do you find it similarly interesting that a 5 year old account with 3 other posts and a few comments posted a 1.5 year old article and managed to get over 300 upvotes on it?
- seganddr 7y ago
  I had never considered those metrics as a possible source of data. I'll have to think about it. Thank you.

coleifer 7y ago

Nice advertisement / damage control.

badrabbit 7y ago

I don't get it, are you being naive or ignorant? Are you not aware of how much genetic science and ML have already been abused in the past? Are you also not aware of how much the laws and public understanding of the techs and their implications is severely lacking? Cure parkinsons but hey systemic eugenics no big deal? I mean,come on...we live in quite the evil world with all sorts of people that will gladly misuse this data and the tech to make inference out of it. I am all for finding cures but the unwitting public needs to be protected. Most people assume there is no way a legit company would do something terribly evil.

wahern 7y ago
> Most people assume there is no way a legit company would do something terribly evil. Are you kidding? Cynicism is endemic in the U.S. today; likewise for anti-corporatism. You can see it in the comments. Personally, I'm in the same boat as the OP: I was a very early 23&Me customer and persuaded many family members to also participate, with the knowledge that 23&Me would monetize the data through research. They never claimed to be a non-profit. They were relatively transparent about their opt-in and opt-out policies, though after the FDA debacle their "simplified" website became significantly more complex and opaque. I also participated in a Kaiser Permanente whole genome sequencing research program, donated my blood samples, and then never heard anything ever again. I hope they're doing good science, especially because donating my whole genome is significantly more invasive from a privacy perspective than a few thousand SNPs. If we sat around and waited for the perfect environment that addressed everybody's concerns, we'll be waiting forever. In the meantime, the less selfish among us are putting our own privacy at risk for the greater good. And the more of us that do that, the more political pressure there will be to sustain and expand existing legal protections prohibiting discrimination. Not only am I glad 23&Me is selling the data (and this isn't the first time), I hope that overtime they'll have enough income that they can start sharing much of their data for free with schools and labs around the world. The latter may never come to pass, but I can't let perfection be the enemy of the good. And I won't let fear and uncertainty turn me into a perpetual privacy victim. EDIT: I just received an e-mail from KP regarding their research project. It's the first I've noticed, but judging by my e-mail log they seem to have sent a handful over the past several years which I apparently deleted as spam. Here's the project website: https://researchbank.kaiserpermanente.org/ https://researchbank.kaiserpermanente.org/

laurencerowe 7y ago

> I knew that $99 was not enough to pay for the processing, storage and hosting of my data. Genotyping is not full sequencing. The files produced are not that large. According to this press release volume pricing is below $40 / sample. https://www.businesswire.com/news/home/20160616005665/en/Illumina-Announces-Initial-Customer-Orders-Global-Screening https://www.businesswire.com/news/home/20160616005665/en/Ill...

mistersquid 7y ago

This genetic data will be used by 3rd parties not (only?) altruistically but to maximize profits. Any products developed using this genetic data will likely have profit as their primary motive. Wanting to accelerate the development of novel drugs and therapies to treat disease is great. But rather than giving a private company carte blanche to share data with third parties trusting (hoping?) that the outcome will benefit humanity, it would be better first to establish a sensible regulatory framework around genetic information and its uses by private companies and the governnment.

alexfromapex 7y ago
Can’t upvote this enough
killjoywashere 7y ago
> it would be better first to establish a sensible regulatory framework The new common rule provides for just such a thing called broad consent, which requires tracking patient consent in a fine-grained and revokable way. Interestingly, about the time it came into effect, I heard about a new start-up supported by George Church, called Nebula, which provides just such a consent service using a blockchain. So, the regulatory framework exists, and a product to implement that is on the market. And this stuff was in discussion for better part of a decade, so it's not like this just snuck up on people. https://blog.nebula.org/anonymous-sequencing/ https://blog.nebula.org/anonymous-sequencing/
travisoneill1 7y ago
Of course their motive is not altruistic, and what does it matter anyway? They won't make money if the outcome of the research isn't beneficial. What use would a bunch of government bureaucracy be?
- gowld 7y ago
  amp.cnn.com/cnn/2019/12/17/us/purdue-pharma-sackler-family-10-billion-withdrawals/index.html
marticode 7y ago

throwawaybbb 7y ago

I hope you enjoy being uninsurable for Parkinson's in the future.

NotSammyHagar 7y ago
My grandfather had parkinson, I have wondered about all this genetic testing. I almost bought those kits when they were alive. I was worried about future negatives, never imagined the law enforcement 'find relatives' thing that happens now.

Antoninus 7y ago

These are my sentiments as well. My wife and I did this before our first child. The data is kept in both a secure server and physical thumb drive with reserved domains, personal email adress with their legal names. I wish I had this type of data growing up, I’m sure I would have at least eaten better. All I got was, grandpa died of a heart attack and grandma died of cancer. Hopefully the kids find it useful.