5 ms·

I paid them so that they can do useful things with my sample, like correlate it with research or do more research on their own. I then volunteered to share more

I paid them so that they can do useful things with my sample, like correlate it with research or do more research on their own. I then volunteered to share more of my data in their surveys, and collected more samples for them for further research. I think it's fantastic that they are sharing this with drug companies. In fact, my main question is: What took them so long?! My DNA isn't some terrible secret I have to hide in the dark. I'm just one of like 8 billion variants of imperfectly copied ape. Maybe paying 23andme to do something useful with it will be my only lasting legacy in this world, lol. It's not that I "didn't see it coming", it's that I hoped this would happen from the get-go.

jacquesm 3y ago
GSK doesn't have your well being as it's goal, it has it's own revenue stream as its goal. Without an ethical framework around consent for the use of this data the potential for abuse is substantial, upsides are optional. They need to make that money back somehow.
- solardev 3y ago
  If my worthless genomic data contributes to a drug that one day helps even one other person, I'm fine with this. Would I prefer all this data be free and open? Sure. Failing that, would I want to hold onto it? No. I'd still rather some mega evil pharma have it and be able to develop some overpriced medication that may one day be genericized. It's not doing me or anyone any good just sitting in my body. Hell, I'll spit for anyone wanting to do research, for profit or not. I think there are very few true "good guys" in the world. But if mega evil pharma corp has even a 1% chance of accidentally doing some tiny good as a byproduct of their evil... that's already more than would've happened if 23andme didn't share it with them. It's cool with me if they make some money in the process. My DNA isn't some creative work that I need royalties on. What nature giveth, I spiteth.
  - MerelyMortal 3y ago
    Just because you value something as worthless, does not mean everyone else values it as worthless.
    - solardev 3y ago
      I'm not demanding anyone else give theirs. I'm just happy to give mine. Different customers of the same company can respond differently to their actions. In this case my opinion is that this a net good. Others can and will disagree, of course!
  - jacquesm 3y ago
    Are your children and your parents also on board with this? If not: did you realize you just contributed half of their DNA as well?
    - MerelyMortal 3y ago
      I feel bad for the children whose parents post about their medical conditions on social media, your comment reminds me of that travesty.
      - solardev 3y ago
        Even I agree with this, despite not having kids. Their lives aren't mine to monetize or publicize. Let them have whatever semblance of a childhood they can have under the already too harsh spotlight of modern media, yeesh. It was bad enough in the 2000s when my mom liked all my Facebook posts. Real travesty here.
    - solardev 3y ago
      No kids and never will (vasectomy). Parents couldn't care less. They were intrigued by the ancestry stuff though. They're not long of this world anyway and probably won't live to see genetic medicines become an everyday reality :( My partner's bigger family also contributed a lot of their DNA to this or similar services. I'll have to ask her what they think of sharing it with third (fourth?) parties. Be an interesting data point at least. I feel like the HN crowd holds a lot of uncommon opinions (not good or bad, just different from most people I know IRL).
      - jacquesm 3y ago
        Ok, that makes you a minority in the sense that I think that the potential negative fall out from your decision is limited enough that you were entirely free to make it. But the bulk of the people that sent their family data to 23andme isn't that well informed and likely has no idea about the potential for abuse of such data. Maybe it is the 'dark side' in me or maybe it is simply seeing so many corporate abuses over a lifetime in IT that I can't see beyond the abuse to the possible good. The fact that it has Google backing is one major strike against it, as is the fact that they were going to commercialize the data itself right from the get-go whilst giving their paying customers something the amounted to expensive infotainment. It's clear that they wanted the data, not clear that there would be benefits to the participants, the data returned is just too coarse for that and akin to doing a lot of screening without symptoms, a practice that the medical profession has warned against repeatedly.
  - nonrandomstring 3y ago
    > It's not doing me or anyone any good just sitting in my body. That's funny dude! Not laughing _at_ you, but you just nailed self-objectification and reification better than a whole chapter of social scince jibberjabber or pschology babble.
    - solardev 3y ago
      Makes sense! I'm also a "yeah they can poke and prod my body and harvest my organs, not like I have any use for them after I'm dead" kinda donor. At least it's consistently materialist, eh? (as opposed to spiritual dualism, etc.) This is probably not a controversial stance here on HN, but IMO humans are essentially wet, mostly hairless sacks of proteins and dreams. It's kinda cool that despite that, we are motile and can pass for sentient (some days of the week).
      - nonrandomstring 3y ago
        Ugly Bag of Mostly Water! :) (A Trek TOS thing I think)
        itishappy 3y ago
        My favorite web-comic describes us as "bag[s] of no-longer-potable water." https://www.schlockmercenary.com/2003-03-13 https://www.schlockmercenary.com/2003-03-13
- flandish 3y ago
  I wish the data would be combined with things like Vanderbilt’s BioVU databanks, etc, for actual translational research and not for swift for profit research. This is just another version of “socialized research privatized profit.”
- fsckboy 3y ago
  > GSK doesn't have your well being as it's goal, it has it's own revenue stream as its goal. Without an ethical framework around consent for the use of this data the potential for abuse is substantial I don't like that you seem to be trying to drive a wedge between revenue streams and ethical goods. Measuring how much money societies spend on things is the best measure we have of how much societies value those things. Companies (and people, including employees and customers of companies) do all sorts of horrible, unethical things. But profit (surplus) is a good thing overall, as is symmetric information and competition.
Arainach 3y ago
>My DNA isn't some terrible secret I have to hide in the dark. .....please get back to us on how that opinion ages once your insurance companies get ahold of the data.
- zo1 3y ago
  Not OP, and I agree that research needs to get access to DNA for medicinal, personalization and drug-development research purposes. What I'm more worried about is this sort of data being used to train a neural network that maps genes to physical traits, which would be both a goldmine and Pandora's box. If I could compare it to something recent, it's the whole Content -> LLM -> Content loop that was created and we're all upset over now to various degrees. Our DNA is the content and up until now has been an opaque black-box with only minor views into it for very specific genetic diseases. Once they open up the box that allows them to get to things like IQ, height, muscle-density, resistance to diseases, fertility, etc, then the human race is in for a wild down-hill ride.
- xnorswap 3y ago
  Once that happens, it won't be by the backdoor. 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".
  - trimethylpurine 3y ago
    In the US at least, according to some quick web searching, discounts must apply to the entire pool of insured. (For medical insurance specifically.)
  - sergers 3y ago
    My household mortgage provider, TD Bank Canada, offered me critical illness/death "insurance" for me and my spouse. 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
slg 3y ago
>My DNA isn't some terrible secret I have to hide in the dark. Considering we leave our DNA basically everywhere we spend more than a few moments, it seems like a rather impossible task to keep it secret anyway. I mean if we are fearing some dystopian world in which people are discriminated against based on their DNA profiles, why would that only apply to people who volunteered their DNA?
- notahacker 3y ago
  Yeah, this. If an entity really wants to screen your DNA, there are easier routes than figuring out how to deanonymise you from a collection of thousands of profiles with basic demographic info they've just bought or paying enough to convince the entity with the very profitable lawful line in selling anonymised data to break the law for them.
- RHSeeger 3y ago
  This is a matter of scale, though. There is a big difference between - Someone wants to know if your DNA matches the killer's... so they get a hold of your DNA and test it - The companies you interact with all have easy access to everyone's DNA and can make decisions based on things like who is the most likely to get addicted to gambling. We've been fighting tooth and nail to prevent things like "people with hispanic surnames have a harder time getting a loan for a house". It's illegal to do so, and we still have problems with it. Now talking about adding in all kinds of "this person is more likely to have this condition" into those calculations. And they WILL be included if they're available; even if it's not obvious.
  - slg 3y ago
    >- The companies you interact with all have easy access to everyone's DNA and can make decisions based on things like who is the most likely to get addicted to gambling. Yes, that is exactly my point. In these hypothetical dystopias, this is going to apply to "everyone's DNA" and not just some subset of people. In order to fear volunteering your DNA, you need to fear a very specific level of dystopia in which this illegal DNA discriminating becomes common, but companies don't do anything illegal to acquire the DNA data. It is like imagining that people could have escaped Nazi persecution if they just never admitted they were Jewish. Dystopias don't work like that. The evil people aren't going to give you a choice. If we are going to live in a dystopia, it likely isn't going to be the Goldilocks dystopia in which just the right amount of evilness exists for this to be an issue.
mrweasel 3y ago
> My DNA isn't some terrible secret I have to hide in the dark. You DNA isn't as unique as you think it is, or it is, but specific parts aren't. The way law enforcement uses DNA tests only compares a small part of your DNA sequence. People have already been wrongly convicted based on DNA "evidence". If 23andMe is opening up access to their database of customers there's a very real chance for people to be misidentified and potentially implicated in crimes they didn't commit, again this has already happened using existing DNA databases. So yes, you absolutely need to keep your DNA in the dark and only provide it when it's beneficial to you and when you can trust that it's kept safe or destroyed. Providing DNA to a company that might sell it in the future was always a stupid idea. 23andMe might be completely safe in what they are doing, but what stops them from selling your data to say Palantir in the future?
- xyproto 3y ago
  If enough relatives shares their DNA, then your DNA is not in the dark anymore either. Over time, I think protecting ones DNA is an uphill battle.
  - mrweasel 3y ago
    > I think protecting ones DNA is an uphill battle. Sure, I'd agree with you on that, but that doesn't mean that you shouldn't try and just give up. Ideally it should matter and there is a lot of good and positive uses, but still little protection against misuse.
- krisoft 3y ago
  > there's a very real chance for people to be misidentified and potentially implicated in crimes they didn't commit, again this has already happened using existing DNA databases. The solution there is more light, not more obscuration. You are right, the more samples you screen from the more false positives you will get. The solution is to corraborate the matches with other information, and being transparent about the levels of confidence.
  - bossyTeacher 3y ago
lm28469 3y ago
> My DNA isn't some terrible secret I have to hide in the dark. Like your faith before 1930s Germany ? What will you do when they pump your health insurance rate 300% because you have a "bad" DNA ?

jacquesm 3y ago

GSK doesn't have your well being as it's goal, it has it's own revenue stream as its goal. Without an ethical framework around consent for the use of this data the potential for abuse is substantial, upsides are optional. They need to make that money back somehow.

solardev 3y ago
If my worthless genomic data contributes to a drug that one day helps even one other person, I'm fine with this. Would I prefer all this data be free and open? Sure. Failing that, would I want to hold onto it? No. I'd still rather some mega evil pharma have it and be able to develop some overpriced medication that may one day be genericized. It's not doing me or anyone any good just sitting in my body. Hell, I'll spit for anyone wanting to do research, for profit or not. I think there are very few true "good guys" in the world. But if mega evil pharma corp has even a 1% chance of accidentally doing some tiny good as a byproduct of their evil... that's already more than would've happened if 23andme didn't share it with them. It's cool with me if they make some money in the process. My DNA isn't some creative work that I need royalties on. What nature giveth, I spiteth.
- MerelyMortal 3y ago
  Just because you value something as worthless, does not mean everyone else values it as worthless.
  - solardev 3y ago
    I'm not demanding anyone else give theirs. I'm just happy to give mine. Different customers of the same company can respond differently to their actions. In this case my opinion is that this a net good. Others can and will disagree, of course!
- jacquesm 3y ago
  Are your children and your parents also on board with this? If not: did you realize you just contributed half of their DNA as well?
  - MerelyMortal 3y ago
    I feel bad for the children whose parents post about their medical conditions on social media, your comment reminds me of that travesty.
    - solardev 3y ago
      Even I agree with this, despite not having kids. Their lives aren't mine to monetize or publicize. Let them have whatever semblance of a childhood they can have under the already too harsh spotlight of modern media, yeesh. It was bad enough in the 2000s when my mom liked all my Facebook posts. Real travesty here.
  - solardev 3y ago
    No kids and never will (vasectomy). Parents couldn't care less. They were intrigued by the ancestry stuff though. They're not long of this world anyway and probably won't live to see genetic medicines become an everyday reality :( My partner's bigger family also contributed a lot of their DNA to this or similar services. I'll have to ask her what they think of sharing it with third (fourth?) parties. Be an interesting data point at least. I feel like the HN crowd holds a lot of uncommon opinions (not good or bad, just different from most people I know IRL).
    - jacquesm 3y ago
      Ok, that makes you a minority in the sense that I think that the potential negative fall out from your decision is limited enough that you were entirely free to make it. But the bulk of the people that sent their family data to 23andme isn't that well informed and likely has no idea about the potential for abuse of such data. Maybe it is the 'dark side' in me or maybe it is simply seeing so many corporate abuses over a lifetime in IT that I can't see beyond the abuse to the possible good. The fact that it has Google backing is one major strike against it, as is the fact that they were going to commercialize the data itself right from the get-go whilst giving their paying customers something the amounted to expensive infotainment. It's clear that they wanted the data, not clear that there would be benefits to the participants, the data returned is just too coarse for that and akin to doing a lot of screening without symptoms, a practice that the medical profession has warned against repeatedly.
- nonrandomstring 3y ago
  > It's not doing me or anyone any good just sitting in my body. That's funny dude! Not laughing _at_ you, but you just nailed self-objectification and reification better than a whole chapter of social scince jibberjabber or pschology babble.
  - solardev 3y ago
    Makes sense! I'm also a "yeah they can poke and prod my body and harvest my organs, not like I have any use for them after I'm dead" kinda donor. At least it's consistently materialist, eh? (as opposed to spiritual dualism, etc.) This is probably not a controversial stance here on HN, but IMO humans are essentially wet, mostly hairless sacks of proteins and dreams. It's kinda cool that despite that, we are motile and can pass for sentient (some days of the week).
    - nonrandomstring 3y ago
      Ugly Bag of Mostly Water! :) (A Trek TOS thing I think)
      - itishappy 3y ago
        My favorite web-comic describes us as "bag[s] of no-longer-potable water." https://www.schlockmercenary.com/2003-03-13 https://www.schlockmercenary.com/2003-03-13
flandish 3y ago
I wish the data would be combined with things like Vanderbilt’s BioVU databanks, etc, for actual translational research and not for swift for profit research. This is just another version of “socialized research privatized profit.”
fsckboy 3y ago
> GSK doesn't have your well being as it's goal, it has it's own revenue stream as its goal. Without an ethical framework around consent for the use of this data the potential for abuse is substantial I don't like that you seem to be trying to drive a wedge between revenue streams and ethical goods. Measuring how much money societies spend on things is the best measure we have of how much societies value those things. Companies (and people, including employees and customers of companies) do all sorts of horrible, unethical things. But profit (surplus) is a good thing overall, as is symmetric information and competition.

Arainach 3y ago

>My DNA isn't some terrible secret I have to hide in the dark. .....please get back to us on how that opinion ages once your insurance companies get ahold of the data.

zo1 3y ago
Not OP, and I agree that research needs to get access to DNA for medicinal, personalization and drug-development research purposes. What I'm more worried about is this sort of data being used to train a neural network that maps genes to physical traits, which would be both a goldmine and Pandora's box. If I could compare it to something recent, it's the whole Content -> LLM -> Content loop that was created and we're all upset over now to various degrees. Our DNA is the content and up until now has been an opaque black-box with only minor views into it for very specific genetic diseases. Once they open up the box that allows them to get to things like IQ, height, muscle-density, resistance to diseases, fertility, etc, then the human race is in for a wild down-hill ride.
xnorswap 3y ago
Once that happens, it won't be by the backdoor. 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".
- trimethylpurine 3y ago
  In the US at least, according to some quick web searching, discounts must apply to the entire pool of insured. (For medical insurance specifically.)
- sergers 3y ago
  My household mortgage provider, TD Bank Canada, offered me critical illness/death "insurance" for me and my spouse. 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

slg 3y ago

>My DNA isn't some terrible secret I have to hide in the dark. Considering we leave our DNA basically everywhere we spend more than a few moments, it seems like a rather impossible task to keep it secret anyway. I mean if we are fearing some dystopian world in which people are discriminated against based on their DNA profiles, why would that only apply to people who volunteered their DNA?

notahacker 3y ago
Yeah, this. If an entity really wants to screen your DNA, there are easier routes than figuring out how to deanonymise you from a collection of thousands of profiles with basic demographic info they've just bought or paying enough to convince the entity with the very profitable lawful line in selling anonymised data to break the law for them.
RHSeeger 3y ago
This is a matter of scale, though. There is a big difference between - Someone wants to know if your DNA matches the killer's... so they get a hold of your DNA and test it - The companies you interact with all have easy access to everyone's DNA and can make decisions based on things like who is the most likely to get addicted to gambling. We've been fighting tooth and nail to prevent things like "people with hispanic surnames have a harder time getting a loan for a house". It's illegal to do so, and we still have problems with it. Now talking about adding in all kinds of "this person is more likely to have this condition" into those calculations. And they WILL be included if they're available; even if it's not obvious.
- slg 3y ago
  >- The companies you interact with all have easy access to everyone's DNA and can make decisions based on things like who is the most likely to get addicted to gambling. Yes, that is exactly my point. In these hypothetical dystopias, this is going to apply to "everyone's DNA" and not just some subset of people. In order to fear volunteering your DNA, you need to fear a very specific level of dystopia in which this illegal DNA discriminating becomes common, but companies don't do anything illegal to acquire the DNA data. It is like imagining that people could have escaped Nazi persecution if they just never admitted they were Jewish. Dystopias don't work like that. The evil people aren't going to give you a choice. If we are going to live in a dystopia, it likely isn't going to be the Goldilocks dystopia in which just the right amount of evilness exists for this to be an issue.

mrweasel 3y ago

> My DNA isn't some terrible secret I have to hide in the dark. You DNA isn't as unique as you think it is, or it is, but specific parts aren't. The way law enforcement uses DNA tests only compares a small part of your DNA sequence. People have already been wrongly convicted based on DNA "evidence". If 23andMe is opening up access to their database of customers there's a very real chance for people to be misidentified and potentially implicated in crimes they didn't commit, again this has already happened using existing DNA databases. So yes, you absolutely need to keep your DNA in the dark and only provide it when it's beneficial to you and when you can trust that it's kept safe or destroyed. Providing DNA to a company that might sell it in the future was always a stupid idea. 23andMe might be completely safe in what they are doing, but what stops them from selling your data to say Palantir in the future?

xyproto 3y ago
If enough relatives shares their DNA, then your DNA is not in the dark anymore either. Over time, I think protecting ones DNA is an uphill battle.
- mrweasel 3y ago
  > I think protecting ones DNA is an uphill battle. Sure, I'd agree with you on that, but that doesn't mean that you shouldn't try and just give up. Ideally it should matter and there is a lot of good and positive uses, but still little protection against misuse.
krisoft 3y ago
> there's a very real chance for people to be misidentified and potentially implicated in crimes they didn't commit, again this has already happened using existing DNA databases. The solution there is more light, not more obscuration. You are right, the more samples you screen from the more false positives you will get. The solution is to corraborate the matches with other information, and being transparent about the levels of confidence.
- bossyTeacher 3y ago

lm28469 3y ago

> My DNA isn't some terrible secret I have to hide in the dark. Like your faith before 1930s Germany ? What will you do when they pump your health insurance rate 300% because you have a "bad" DNA ?