4 ms·

I have an honest question: what are the specific negative consequences you, personally, are worried about if your genome, today, was made completely public?

giuliomagnifico 4y ago
For example an insurance company can rise the price of your contract if they know that you are genetically predisposed for some diseases.
- bpodgursky 4y ago
  I'm asking at a personal level, because in the US this genetic discrimination is against federal law, and I (personally) have 0 fear that an insurance company will seek out and use this information to illegally discriminate against me. Are you worried that companies will not respect this law? Or are you not US based.
  - rnk 4y ago
    It's illegal but companies will figure out a way to work around it. Why can't they just require your authorization as part of getting insurance? You might notice lots of services require you to give up certain privacy rights. I don't want the phone company to sell my location data, I don't want apps on my phone to sell my location data. There are all these tenuous yet successful ways where your right to opt out is overcome. I'm happy to click in boxes in apps, I've done it lots of times, I turn off location history when possible. But because I carry a phone I believe it's certain that some apps somewhere are storing my location. Same for having a recent car with a data modem in it. And then there are license plate readers. I want to disallow all of these things, but the battle is basically lots as far as I can tell.
    - novok 4y ago
      That just means the laws don't have teeth. Often if they do, they straight out say it's illegal to even get 'authorization' or anything approaching it. It would be a straight out ban vs. an "ok with consent" which is what authorization is about. You can't sign a contract to sign yourself into slavery, it's just straight out illegal. And thus you don't see anybody being signed into slavery via contract in the USA, and there many other things that act this way in law.
    - lotsofpulp 4y ago
      > It's illegal but companies will figure out a way to work around it. Why can't they just require your authorization as part of getting insurance? Because it is highly regulated, with no known examples of insurance companies and regulators colluding to incorporate health data for pricing purposes. https://www.healthcare.gov/how-plans-set-your-premiums https://www.healthcare.gov/how-plans-set-your-premiums For example, you can even figure out your health insurance premium in the state of NJ just based on this pdf: https://www.state.nj.us/dobi/division_insurance/ihcseh/ihcrates2022.pdf https://www.state.nj.us/dobi/division_insurance/ihcseh/ihcra...
- lotsofpulp 4y ago
  In the US, a health insurance company cannot price premiums based on health or any pre existing conditions. https://www.healthcare.gov/how-plans-set-your-premiums https://www.healthcare.gov/how-plans-set-your-premiums > FYI Your health, medical history, or gender can’t affect your premium. However, life insurance, long term disability insurance, and I presume other types of insurance are free to use health data for pricing. Of course, if genetic data was known to be worth it for predicting probability of death or disability by a certain age, those insurance companies would already be requiring applicants to provide genetic data.
JZL003 4y ago
The thing is it's not much data in absolute terms, but it's not going to change for over human timescales and tells you something about your entire family, going back generations in the past and many in the future. On the other hand, look at GWAS studies, if you have many people and know if they get a disease or not, you can narrow down exactly what parts of the genome are implicated in the disease, and start designing drugs for it. It's hard work and doesn't always work, but it allows us to go from high level disease phenotype -> exact mechanistic problems
- bpodgursky 4y ago
  Yeah and I'm digging into this because I personally would much prefer that these GWAS studies have access to my genome and medical data, so they can design drugs for whatever my specific genotype is. I think it's far more likely that this will benefit me and my children, than hurt me. I'm not telling other people they are wrong to be afraid, but I want to understand the exact mechanism of those fears.
  - JZL003 4y ago
    If you're interested and a US citizen, look into the All of Us program by NIH. They're going to sequence a million people's genome (!!) and allow researchers to use it. And they're doing it in a very careful safe way. It will mean many researchers will have your deanonymized genome (and it's up for debate if it's possible to truly future-proof deanonymize a genome) but it's not sketchy at all and will be a huge help for future generations IMO. And if you're in another country, especially european ones, look into other research programs, there are lots round
  - FollowingTheDao 4y ago
    Why drugs? These GWAS studies should be looking at nutrition.
    - JZL003 4y ago
      I guess I agree on principle and diet is understated. But let's say, as has happened recently, you're looking at Alzheimer's or lewey body syndrome and you find the gwas returns a lot of results for a certain cellular pathway (like a stress response or where a cell breaks down misfolded proteins, leading to plaques). You can look for small molecule drug which targets that, or try a fancier treatment to target that exact protein. But how would that insight extend to diet? Beyond just eating more health (in whatever way) and exercising more, which does go a long way. Thse drugs are trying to be extremely targeted and intricate in now they work
sometimeshuman 4y ago
Would you want a dating App telling your potential match all of your negative genetic predispositions ? How about your employer ? Or your parents, would they have raised you differently if they had unnecessary paranoia about a predisposition that you would never manifest. Human nature values first impressions and you can expose your flaws after you have established your reputation a bit. This data has the potential to short-circuit that and could lead to yet another technology that is maladapted to human nature.
- deleted 4y ago
  [deleted]
colinsane 4y ago
during extreme wartime or societal setback, we often see society look for scapegoats. the outgroups created in living memory have been based on social standing but also ancestry and things tightly related to the genome. if/when the time comes of a meaningful societal regression like this, i want it to not be so easy to drag me into it. it’s precautionary.

giuliomagnifico 4y ago

For example an insurance company can rise the price of your contract if they know that you are genetically predisposed for some diseases.

bpodgursky 4y ago
I'm asking at a personal level, because in the US this genetic discrimination is against federal law, and I (personally) have 0 fear that an insurance company will seek out and use this information to illegally discriminate against me. Are you worried that companies will not respect this law? Or are you not US based.
- rnk 4y ago
  It's illegal but companies will figure out a way to work around it. Why can't they just require your authorization as part of getting insurance? You might notice lots of services require you to give up certain privacy rights. I don't want the phone company to sell my location data, I don't want apps on my phone to sell my location data. There are all these tenuous yet successful ways where your right to opt out is overcome. I'm happy to click in boxes in apps, I've done it lots of times, I turn off location history when possible. But because I carry a phone I believe it's certain that some apps somewhere are storing my location. Same for having a recent car with a data modem in it. And then there are license plate readers. I want to disallow all of these things, but the battle is basically lots as far as I can tell.
  - novok 4y ago
    That just means the laws don't have teeth. Often if they do, they straight out say it's illegal to even get 'authorization' or anything approaching it. It would be a straight out ban vs. an "ok with consent" which is what authorization is about. You can't sign a contract to sign yourself into slavery, it's just straight out illegal. And thus you don't see anybody being signed into slavery via contract in the USA, and there many other things that act this way in law.
  - lotsofpulp 4y ago
    > It's illegal but companies will figure out a way to work around it. Why can't they just require your authorization as part of getting insurance? Because it is highly regulated, with no known examples of insurance companies and regulators colluding to incorporate health data for pricing purposes. https://www.healthcare.gov/how-plans-set-your-premiums https://www.healthcare.gov/how-plans-set-your-premiums For example, you can even figure out your health insurance premium in the state of NJ just based on this pdf: https://www.state.nj.us/dobi/division_insurance/ihcseh/ihcrates2022.pdf https://www.state.nj.us/dobi/division_insurance/ihcseh/ihcra...
lotsofpulp 4y ago
In the US, a health insurance company cannot price premiums based on health or any pre existing conditions. https://www.healthcare.gov/how-plans-set-your-premiums https://www.healthcare.gov/how-plans-set-your-premiums > FYI Your health, medical history, or gender can’t affect your premium. However, life insurance, long term disability insurance, and I presume other types of insurance are free to use health data for pricing. Of course, if genetic data was known to be worth it for predicting probability of death or disability by a certain age, those insurance companies would already be requiring applicants to provide genetic data.

JZL003 4y ago

The thing is it's not much data in absolute terms, but it's not going to change for over human timescales and tells you something about your entire family, going back generations in the past and many in the future. On the other hand, look at GWAS studies, if you have many people and know if they get a disease or not, you can narrow down exactly what parts of the genome are implicated in the disease, and start designing drugs for it. It's hard work and doesn't always work, but it allows us to go from high level disease phenotype -> exact mechanistic problems

bpodgursky 4y ago
Yeah and I'm digging into this because I personally would much prefer that these GWAS studies have access to my genome and medical data, so they can design drugs for whatever my specific genotype is. I think it's far more likely that this will benefit me and my children, than hurt me. I'm not telling other people they are wrong to be afraid, but I want to understand the exact mechanism of those fears.
- JZL003 4y ago
  If you're interested and a US citizen, look into the All of Us program by NIH. They're going to sequence a million people's genome (!!) and allow researchers to use it. And they're doing it in a very careful safe way. It will mean many researchers will have your deanonymized genome (and it's up for debate if it's possible to truly future-proof deanonymize a genome) but it's not sketchy at all and will be a huge help for future generations IMO. And if you're in another country, especially european ones, look into other research programs, there are lots round
- FollowingTheDao 4y ago
  Why drugs? These GWAS studies should be looking at nutrition.
  - JZL003 4y ago
    I guess I agree on principle and diet is understated. But let's say, as has happened recently, you're looking at Alzheimer's or lewey body syndrome and you find the gwas returns a lot of results for a certain cellular pathway (like a stress response or where a cell breaks down misfolded proteins, leading to plaques). You can look for small molecule drug which targets that, or try a fancier treatment to target that exact protein. But how would that insight extend to diet? Beyond just eating more health (in whatever way) and exercising more, which does go a long way. Thse drugs are trying to be extremely targeted and intricate in now they work

sometimeshuman 4y ago

Would you want a dating App telling your potential match all of your negative genetic predispositions ? How about your employer ? Or your parents, would they have raised you differently if they had unnecessary paranoia about a predisposition that you would never manifest. Human nature values first impressions and you can expose your flaws after you have established your reputation a bit. This data has the potential to short-circuit that and could lead to yet another technology that is maladapted to human nature.

deleted 4y ago
[deleted]

colinsane 4y ago

during extreme wartime or societal setback, we often see society look for scapegoats. the outgroups created in living memory have been based on social standing but also ancestry and things tightly related to the genome. if/when the time comes of a meaningful societal regression like this, i want it to not be so easy to drag me into it. it’s precautionary.