4 ms·

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?

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.
    - solardev 3y ago
      I don't disagree with what you're saying (that people don't always understand the implications of their casual dealings with big evil corps). But can I offer another perspective, one of potential differences in values? Privacy, for me, isn't a super high concern. Having some is nice, but it's never my top consideration. (I know this skews against the dominant HN sentiment, and Slashdot's too before it. That's okay.) Science, however, IS huge for me -- even when the science is done by sub-optimal orgs like your Big Evil Corp du jour. When I learned that Google owned 23andme, my reaction wasn't one of horror. Instead, it was "Oh cool! Maybe they'll actually have the resources to correlate this with all their other data on me." I then proceeded to sign up for Google Health, Google Fit, etc., and made sure to upload my health readings to their servers in the explicit hope that they would be able to merge it with 23andme and other data. My dream was that one day they would be able to identify genetic markers not just for health and lifestyle stuff but also behavioral data, like my YouTube preferences and Gmail conservational styles. Gattaca to me was a utopia, not a dystopia. I know that's probably not a common viewpoint. But I was really excited by the possibilities, and it doesn't bother me in the least that Google knows so much about me. I just wish they'd do something useful with all of it. FWIW, I just asked my partner about the data sharing. She said she's fine with it and would opt-in if given the choice. Most of her family too (many were early adopters of genetic testing). One individual in particular skews conservative and is conspiracy-theory-prone and would probably not, though. I wonder how much of this preference is political or personality or similar. Would be interesting to plot privacy needs vs the Big 5 personality test, maybe. But how would you get participants? Lol. > 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. To this point, yes, you're probably right, but these things are rarely black and white. It's a false dichotomy. They can be harvesting all my data but STILL offer a useful service at a good value to me. And -- more importantly -- nobody else stepped up to offer the same thing with a better business model. Whether it's 23andme or YouTube, it's not necessarily the case that all their customers have their blindfolds on. Some of us are just OK with the tradeoffs and buy into it willingly. The medical profession isn't always able to meet consumer desires, to say the least. And even if 23andme didn't do it perfectly... at least they did it. If the medical profession or the government wants to offer something similar, I'd still be interested... they just haven't yet, AFAIK.
- itishappy 3y ago
  Half of their unique DNA. He also contributed 99.6% of yours and mine.
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

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.
  - solardev 3y ago
    I don't disagree with what you're saying (that people don't always understand the implications of their casual dealings with big evil corps). But can I offer another perspective, one of potential differences in values? Privacy, for me, isn't a super high concern. Having some is nice, but it's never my top consideration. (I know this skews against the dominant HN sentiment, and Slashdot's too before it. That's okay.) Science, however, IS huge for me -- even when the science is done by sub-optimal orgs like your Big Evil Corp du jour. When I learned that Google owned 23andme, my reaction wasn't one of horror. Instead, it was "Oh cool! Maybe they'll actually have the resources to correlate this with all their other data on me." I then proceeded to sign up for Google Health, Google Fit, etc., and made sure to upload my health readings to their servers in the explicit hope that they would be able to merge it with 23andme and other data. My dream was that one day they would be able to identify genetic markers not just for health and lifestyle stuff but also behavioral data, like my YouTube preferences and Gmail conservational styles. Gattaca to me was a utopia, not a dystopia. I know that's probably not a common viewpoint. But I was really excited by the possibilities, and it doesn't bother me in the least that Google knows so much about me. I just wish they'd do something useful with all of it. FWIW, I just asked my partner about the data sharing. She said she's fine with it and would opt-in if given the choice. Most of her family too (many were early adopters of genetic testing). One individual in particular skews conservative and is conspiracy-theory-prone and would probably not, though. I wonder how much of this preference is political or personality or similar. Would be interesting to plot privacy needs vs the Big 5 personality test, maybe. But how would you get participants? Lol. > 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. To this point, yes, you're probably right, but these things are rarely black and white. It's a false dichotomy. They can be harvesting all my data but STILL offer a useful service at a good value to me. And -- more importantly -- nobody else stepped up to offer the same thing with a better business model. Whether it's 23andme or YouTube, it's not necessarily the case that all their customers have their blindfolds on. Some of us are just OK with the tradeoffs and buy into it willingly. The medical profession isn't always able to meet consumer desires, to say the least. And even if 23andme didn't do it perfectly... at least they did it. If the medical profession or the government wants to offer something similar, I'd still be interested... they just haven't yet, AFAIK.
itishappy 3y ago
Half of their unique DNA. He also contributed 99.6% of yours and mine.

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