4 ms·

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 awa

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/
- badrabbit 7y ago
  I am not kidding. Only a subset of college educated people have that cynicism > If we sat around and waited for the perfect environment that addressed everybody's concerns, we'll be waiting forever. Forever sounds better than the alternative. You seem so eager to sacrifice so much on the altar of hope based on wishful thinking that this data will not be abused. The #1 rule in technology should be "if it can be abused,it will be abused" there are no exceptions to this. Like another commenter suggested,perhaps your current place in society has you free from such fears but rest assured that in times of war,turmoil or civil conflict or when spy agencies and the military want to gain an operational advantage using this tech/data It will be used against you. Your sick and disabled family members would have been subject to eugenics. It's not difficult to imagine any social group finding themselves in a position of weakness against a hostile power,group or individual. Look at all the horrible experiments the CIA performed, euegenics by usgov/army, the horrible things they did in Iraq and cia detention facilities,etc... the typical situation imho will be a cooperation between evil government and these companies where the companies abuse the data/tech with impunity in exchange for sharing access with their gov protectors. Just take a peek at all the inhumanity and amorality of the pharmaceutical industry's greedy price hikes/rigging. Do you still think these are trustworthy people who won't take every opportunity to profit and say "sorry" when they get caught? (Or just bribe politicians and ignore the whole thing). I mean how naive and deluded are you? I still don't get you and op's state of mind here. Horrible abuses will happen at large scales, guaranteed (not even speculating)!
- LunaSea 7y ago
  > In the meantime, the less selfish among us are putting our own privacy at risk for the greater good. Your actions are actually more selfish. You have an opinion where you don't care about other people's opinion, so that's selfish.
gowld 7y ago
People with the same skin color and religion as the economic and political elites tend to not need to worry about eugenocide.
- badrabbit 7y ago
  Yeah, false sense of security. It takes a day for a well built system to collapse (and your position in it as well).

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/

badrabbit 7y ago
I am not kidding. Only a subset of college educated people have that cynicism > If we sat around and waited for the perfect environment that addressed everybody's concerns, we'll be waiting forever. Forever sounds better than the alternative. You seem so eager to sacrifice so much on the altar of hope based on wishful thinking that this data will not be abused. The #1 rule in technology should be "if it can be abused,it will be abused" there are no exceptions to this. Like another commenter suggested,perhaps your current place in society has you free from such fears but rest assured that in times of war,turmoil or civil conflict or when spy agencies and the military want to gain an operational advantage using this tech/data It will be used against you. Your sick and disabled family members would have been subject to eugenics. It's not difficult to imagine any social group finding themselves in a position of weakness against a hostile power,group or individual. Look at all the horrible experiments the CIA performed, euegenics by usgov/army, the horrible things they did in Iraq and cia detention facilities,etc... the typical situation imho will be a cooperation between evil government and these companies where the companies abuse the data/tech with impunity in exchange for sharing access with their gov protectors. Just take a peek at all the inhumanity and amorality of the pharmaceutical industry's greedy price hikes/rigging. Do you still think these are trustworthy people who won't take every opportunity to profit and say "sorry" when they get caught? (Or just bribe politicians and ignore the whole thing). I mean how naive and deluded are you? I still don't get you and op's state of mind here. Horrible abuses will happen at large scales, guaranteed (not even speculating)!
LunaSea 7y ago
> In the meantime, the less selfish among us are putting our own privacy at risk for the greater good. Your actions are actually more selfish. You have an opinion where you don't care about other people's opinion, so that's selfish.

gowld 7y ago

People with the same skin color and religion as the economic and political elites tend to not need to worry about eugenocide.

badrabbit 7y ago
Yeah, false sense of security. It takes a day for a well built system to collapse (and your position in it as well).