8 ms·

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?

deleted 7y ago
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deleted 7y ago
[deleted]
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?
        toomuchtodo 7y ago
        See my comment above where I contributed my DNA to Harvard’s genome project. I approve all requests to use it in partner studies. Not sure what else you’re expecting, but my opinion is that your expectations are unrealistic. If you don’t like the law, fix the law. If you have evidence a drug company or data provider violated the law, report them to your attorney general.
      - chr1 7y ago
        Which university wants a genome for research? I would gladly give it, but don't know anyone who'd want my genome.
  - darkpicnic 7y ago
    That's incorrect. HIPAA compliance only requires consent between patient and provider. Provider can choose to share that data with other providers. This is how Google purchased medical records by partnering with Ascension. If you are covered under 42 CFR Part 2, then it would not be allowed because the patient has to give consent to ALL parties.
    - missosoup 7y ago
      > Provider can choose to share that data with other providers Not without express consent. The default is 0 hops. Same rules applies for banking info. You want to share with someone else? You have to ask for consent again. A lot of people did unknowingly sign up to have their data shared like you say though, which I think is a regulatory failure more than anything else.
      - JohnFen 7y ago
        In the US, HIPAA allows your medical data to be shared without your express consent as long as certain conditions are met. Generally, they are that the data must be used to help your provider meet a legitimate medical or business need, and they have to have a contract with the entities they share with that constrains their use of that data.
      - darkpicnic 7y ago
        HIPAA compliance has a lot of ambiguity. You are correct if, say, your employer requested medical records from your doctor. However, any entity that works with your provider that is facilitating its business can still get your data without your consent. JohnFen's comment is correct. This is why 42 CFR Part 2 was created; HIPAA was too loose with patient data.
- 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
  [deleted]
- 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.

deleted 7y ago

[deleted]

deleted 7y ago

[deleted]

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?
        toomuchtodo 7y ago
        See my comment above where I contributed my DNA to Harvard’s genome project. I approve all requests to use it in partner studies. Not sure what else you’re expecting, but my opinion is that your expectations are unrealistic. If you don’t like the law, fix the law. If you have evidence a drug company or data provider violated the law, report them to your attorney general.
    - chr1 7y ago
      Which university wants a genome for research? I would gladly give it, but don't know anyone who'd want my genome.
- darkpicnic 7y ago
  That's incorrect. HIPAA compliance only requires consent between patient and provider. Provider can choose to share that data with other providers. This is how Google purchased medical records by partnering with Ascension. If you are covered under 42 CFR Part 2, then it would not be allowed because the patient has to give consent to ALL parties.
  - missosoup 7y ago
    > Provider can choose to share that data with other providers Not without express consent. The default is 0 hops. Same rules applies for banking info. You want to share with someone else? You have to ask for consent again. A lot of people did unknowingly sign up to have their data shared like you say though, which I think is a regulatory failure more than anything else.
    - JohnFen 7y ago
      In the US, HIPAA allows your medical data to be shared without your express consent as long as certain conditions are met. Generally, they are that the data must be used to help your provider meet a legitimate medical or business need, and they have to have a contract with the entities they share with that constrains their use of that data.
    - darkpicnic 7y ago
      HIPAA compliance has a lot of ambiguity. You are correct if, say, your employer requested medical records from your doctor. However, any entity that works with your provider that is facilitating its business can still get your data without your consent. JohnFen's comment is correct. This is why 42 CFR Part 2 was created; HIPAA was too loose with patient data.
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
[deleted]
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.