3 ms·

I do too. That's why I've refused to use the kits I've been gifted... I assumed the fallback here was to build up a cache of data to sell. I'd be nice if they

I do too. That's why I've refused to use the kits I've been gifted... I assumed the fallback here was to build up a cache of data to sell. I'd be nice if they could be prevented from doing that, possibly by the court system.

astrange 3y ago
Selling it is not a problem for the same reason they can't make a profit from it. It's not worth much. (They do have valuable data, but it's the survey answers and friend and family connections. Nobody really cares you have a G at SNP 12213244243.)
- zamadatix 3y ago
  Well, nobody is really interested in the test to find out they have G at SNP 12213244243 either. They do it specifically to get the ancestry, health, and potential physical bias type information you mention - that's the only real data anyone is talking about when referencing the test. Plenty of companies would love to have that kind of data to target users with. The real killer would probably be around how useless healthcare regulation could make having most of that data. I'm not sure how far that really extends or what you manage to sign away by sending in your sample though.
  - astrange 3y ago
    That's kind of what I mean by it not being worth much though. Sure, leaks are embarrassing - the most common issue here is finding out that your dad isn't your real dad. But it's not useful for evil purposes because it's not /accurate/. It doesn't reveal all that much real additional information about your ancestry and health! Since it's decided before you're born: 1. its effects are mostly already expressed and people can know them either by looking at you or (like life insurance) by making you get a medical exam before buying their services. 2. it can get out of date for cultural reasons. Your biological ancestry isn't always how you behave, like if you're adopted. Whereas last name + zip code is a pretty good predictor already. But 23AndMe does have a lot of that information about their customers. The reason they have it is because they asked for it in surveys.
    - digging 3y ago
      > But it's not useful for evil purposes because it's not /accurate/. It doesn't reveal all that much real additional information about your ancestry and health! I'm not actually convinced that accuracy is all that important to the value of personal data. Or perhaps I should say I don't think think there's an accuracy floor at which the value drops to $0.
      - ikekkdcjkfke 3y ago
        Not in the field, but i would assume the data is combined to create profiles to be used to infer data about other people with similar data, so now they have dna into the profiling mix. And in combined I mean the rest of your digital footprint from other sources, not a survey on 23
    - DarknessFalls 3y ago
      Strongly disagree. Through 23andme, I was able to confirm that I have the mutation for the MTHFR gene, which explained why my vitamin B12 always ran low. Once I started supplementing with the methylated form of B12 and folic acid, I noticed a huge improvement in how I felt vs when I used cyanocobalamin for B12. Not to mention some very interesting side effects, like improved tolerance for caffeine.
      - astrange 3y ago
        Are there any downsides to this, of couldn't everyone take those without asking first? (aside from cost)
      - mlrtime 3y ago
        I had this same issue. I bought Pure Encapsulations Adenosyl/Hydroxy B12 and Thorne Research - 5-MTHF 1 mg Folate from amazon but never felt any different. Was my B12 a dud, does everyone with this marker see improved results after supplements?
  - nradov 3y ago
    The health data is pretty underwhelming for most people, outside of a few highly studied genes like BRCA variants. I did a genetic test and it reported that according to one study I had something like a 3% risk of a shoulder injury which is higher than the population average of 2%. So what am I supposed to do with that information, wear shoulder pads or something?
    - codeflo 3y ago
      No, but in theory, an insurance company could use this to calculate your risks differently. Even a 1% signal isn't worthless.
      - nradov 3y ago
        Due to GINA, medical insurance companies aren't allowed to use that data for setting rates or denying coverage so it's useless to them. In theory life insurance companies could use it, but at the scale they operate it's not worth the cost.
- mcherm 3y ago
  Isn't there significant value in the medical information, deciding who to offer insurance to and who to refuse to cover in the event that Republicans gain control of the government and repeal the Affordable Care Act?
  - astrange 3y ago
    No, because health insurance companies already know perfectly well what health conditions you have, since they can see your medical spending. After all, they didn't need your genes when they were denying care in the 90s.
xhkkffbf 3y ago
But is it bad for there to be a cache of data for research? I don't even care if they make a great profit because if there's a great profit to be had it means that some drug came out of the research. While I'm generally cynical about many of the drugs, I do like the fact that the industry tries hard. Eventually they'll make something I want to take. And if this data helps them, all the better.

astrange 3y ago

Selling it is not a problem for the same reason they can't make a profit from it. It's not worth much. (They do have valuable data, but it's the survey answers and friend and family connections. Nobody really cares you have a G at SNP 12213244243.)

zamadatix 3y ago
Well, nobody is really interested in the test to find out they have G at SNP 12213244243 either. They do it specifically to get the ancestry, health, and potential physical bias type information you mention - that's the only real data anyone is talking about when referencing the test. Plenty of companies would love to have that kind of data to target users with. The real killer would probably be around how useless healthcare regulation could make having most of that data. I'm not sure how far that really extends or what you manage to sign away by sending in your sample though.
- astrange 3y ago
  That's kind of what I mean by it not being worth much though. Sure, leaks are embarrassing - the most common issue here is finding out that your dad isn't your real dad. But it's not useful for evil purposes because it's not /accurate/. It doesn't reveal all that much real additional information about your ancestry and health! Since it's decided before you're born: 1. its effects are mostly already expressed and people can know them either by looking at you or (like life insurance) by making you get a medical exam before buying their services. 2. it can get out of date for cultural reasons. Your biological ancestry isn't always how you behave, like if you're adopted. Whereas last name + zip code is a pretty good predictor already. But 23AndMe does have a lot of that information about their customers. The reason they have it is because they asked for it in surveys.
  - digging 3y ago
    > But it's not useful for evil purposes because it's not /accurate/. It doesn't reveal all that much real additional information about your ancestry and health! I'm not actually convinced that accuracy is all that important to the value of personal data. Or perhaps I should say I don't think think there's an accuracy floor at which the value drops to $0.
    - ikekkdcjkfke 3y ago
      Not in the field, but i would assume the data is combined to create profiles to be used to infer data about other people with similar data, so now they have dna into the profiling mix. And in combined I mean the rest of your digital footprint from other sources, not a survey on 23
  - DarknessFalls 3y ago
    Strongly disagree. Through 23andme, I was able to confirm that I have the mutation for the MTHFR gene, which explained why my vitamin B12 always ran low. Once I started supplementing with the methylated form of B12 and folic acid, I noticed a huge improvement in how I felt vs when I used cyanocobalamin for B12. Not to mention some very interesting side effects, like improved tolerance for caffeine.
    - astrange 3y ago
      Are there any downsides to this, of couldn't everyone take those without asking first? (aside from cost)
    - mlrtime 3y ago
      I had this same issue. I bought Pure Encapsulations Adenosyl/Hydroxy B12 and Thorne Research - 5-MTHF 1 mg Folate from amazon but never felt any different. Was my B12 a dud, does everyone with this marker see improved results after supplements?
- nradov 3y ago
  The health data is pretty underwhelming for most people, outside of a few highly studied genes like BRCA variants. I did a genetic test and it reported that according to one study I had something like a 3% risk of a shoulder injury which is higher than the population average of 2%. So what am I supposed to do with that information, wear shoulder pads or something?
  - codeflo 3y ago
    No, but in theory, an insurance company could use this to calculate your risks differently. Even a 1% signal isn't worthless.
    - nradov 3y ago
      Due to GINA, medical insurance companies aren't allowed to use that data for setting rates or denying coverage so it's useless to them. In theory life insurance companies could use it, but at the scale they operate it's not worth the cost.
mcherm 3y ago
Isn't there significant value in the medical information, deciding who to offer insurance to and who to refuse to cover in the event that Republicans gain control of the government and repeal the Affordable Care Act?
- astrange 3y ago
  No, because health insurance companies already know perfectly well what health conditions you have, since they can see your medical spending. After all, they didn't need your genes when they were denying care in the 90s.

xhkkffbf 3y ago

But is it bad for there to be a cache of data for research? I don't even care if they make a great profit because if there's a great profit to be had it means that some drug came out of the research. While I'm generally cynical about many of the drugs, I do like the fact that the industry tries hard. Eventually they'll make something I want to take. And if this data helps them, all the better.