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The Genetic Information Nondiscrimination Act makes it illegal to adjust health (but not life) insurance premiums or discriminate for employment based on geneti

by a2dam 2y ago

The Genetic Information Nondiscrimination Act makes it illegal to adjust health (but not life) insurance premiums or discriminate for employment based on genetic information. Couples who do genetic testing before having kids have the same protections and they're very effective.

echelon 2y ago
Companies do illegal things all the time. And let me flip this situation: are there any laws that prevent advertisers from looking at genetic data to target cohorts? If I were an unethical advertiser, I'd want to advertise to customers with less risk aversion, higher neuroticism, higher sense of FOMO. You could do some truly sickening stuff. Target higher mortality groups, certain personality types, cross reference with familial mortality data and have a field day... There are untold ways this could be abused that I'm almost certain the law doesn't fully protect against.
- progmetaldev 2y ago
  I'm not sure if there are any current laws that prevent this, but there are quite a few laws that would prevent an advertising company from getting this information. Like most things, if we're going by a company that doesn't work within the law, we're already going to lose. What's to stop someone within an advertisement company from reaching out to someone in healthcare IT, and offering a large amount of money for this information? Trying to link this physical data to an online presence is probably not worth the risk and amount of money and time (at this current point in time). All my searching currently shows that there are only laws to protect against using genetics in employment and insurance, within the US. It doesn't look like there are any other protections in the US, other than unrelated laws like HIPAA compliance. I wouldn't even try to pretend to be able to figure out other countries' laws around this (and probably don't understand US law any further than not being able to find information easily available with search tools).
  - Swizec 2y ago
    > What's to stop someone within an advertisement company from reaching out to someone in healthcare IT, and offering a large amount of money for this information? Trying to link this physical data to an online presence is probably not worth the risk and amount of money and time (at this current point in time). HIPAA works because it comes with personal liability. Anyone who sells/leaks/loses HIPAA data gets hit with a $1000 or so fine per person. So if you sell 100 patients' data, you're personally on the hook for $100,000. Your employer pays another cool $10,000/person on top. More of these laws should come with personal liability. HIPAA is the only one I've ever seen people take seriously.
    - AStonesThrow 2y ago
      HIPAA isn’t really a personal privacy regulation at all ... Like other privacy regulation, it’s there to protect the industry and their business/commercial interests. Barriers to access mean less controversy, fewer lawsuits, fewer investigative news stories, fewer insurance disputes. I’d say it’s also designed to reduce contamination or adulteration of data: if every facility needs to do new testing and new evaluation then they can be sure they got the results they need, instead of taking some rando’s word for it. HIPAA isn’t the most onerous barrier to personal access to records, but it’s a huge hassle for someone who wants it opened up for family, friends, and other entities because those forms are onerous. With good transparency in patient portals, authorized users can manage a lot on their own. Also, good luck reading anything but textual notes, because imaging and other medical data is often always distributed in proprietary file formats that don’t simply import into Gimp!
      - dragonwriter 2y ago
        > HIPAA isn’t really a personal privacy regulation at all ... HIPAA as a whole is not. The HIPAA Privacy and Security Rules, which are enforced by a different entity than the rest of HIPAA, are (the bulk of HIPAA is insurance administration rules enforced by the Centers for Medicare and Medicaid Services; the Privacy and Security Rules are personal privacy and information security rules enforced by the DHHS Office of Civil Rights.)
- robwwilliams 2y ago
  I am trying to think of how genotypes would be used for advertising. 1. Ancestry, but that is about as reliable as a photo and puts a company at far greater legal risk. 2. Actionable SNPs associated with a metabolic oddities. Hmm, that might work for a small number of cases but would probably produce huge backlash. 3. We know who your daddy is. Oh great, thanks so much. I hate you. Any advertiser going these routes will be running right into a brick wall. Can you think of plausible scenarios that make someone a buck without legal repercussions and hate mail?
  - Rastonbury 2y ago
    Don't think your reply is arguing in good faith (unless parent was edited) when you basically ignored the implied examples of that comment and made 3 strawmen points
- vintermann 2y ago
  Sure they do, but it's very hard to market illegal activities in a b2b context. How does 23andMe go about selling data allowing insurers to discriminate, without saying that's what they do? I can think of a few things you could try, maybe. But judging from 23andMe's present state, it's clear that whatever things they tried to monetize customers' DNA info, didn't work out well for them.
robwwilliams 2y ago
To the best of my knowledge use of genetic data is illegal in the USA and several other countries. It has been operational banned (self-imposed) by the life insurance industries in the UK and Australia. This was a hit topic in the late 1990s. Here we are 25 years later with few if any known abuses by the life insurance industry. They have MUCH bigger fish to fry: Do you smoke? What is your income, age, and sex, and perhaps your blood pressure and blood chemistry. Each of those is worth 10X your genotype. (I study actuarial genetics in the UM-HET3 mice and do quite a bit of human genetics related to aging. See this PMID: https://pubmed.ncbi.nlm.nih.gov/36173858/ https://pubmed.ncbi.nlm.nih.gov/36173858/ )

by a2dam 2y ago

echelon 2y ago

Companies do illegal things all the time. And let me flip this situation: are there any laws that prevent advertisers from looking at genetic data to target cohorts? If I were an unethical advertiser, I'd want to advertise to customers with less risk aversion, higher neuroticism, higher sense of FOMO. You could do some truly sickening stuff. Target higher mortality groups, certain personality types, cross reference with familial mortality data and have a field day... There are untold ways this could be abused that I'm almost certain the law doesn't fully protect against.

progmetaldev 2y ago
I'm not sure if there are any current laws that prevent this, but there are quite a few laws that would prevent an advertising company from getting this information. Like most things, if we're going by a company that doesn't work within the law, we're already going to lose. What's to stop someone within an advertisement company from reaching out to someone in healthcare IT, and offering a large amount of money for this information? Trying to link this physical data to an online presence is probably not worth the risk and amount of money and time (at this current point in time). All my searching currently shows that there are only laws to protect against using genetics in employment and insurance, within the US. It doesn't look like there are any other protections in the US, other than unrelated laws like HIPAA compliance. I wouldn't even try to pretend to be able to figure out other countries' laws around this (and probably don't understand US law any further than not being able to find information easily available with search tools).
- Swizec 2y ago
  > What's to stop someone within an advertisement company from reaching out to someone in healthcare IT, and offering a large amount of money for this information? Trying to link this physical data to an online presence is probably not worth the risk and amount of money and time (at this current point in time). HIPAA works because it comes with personal liability. Anyone who sells/leaks/loses HIPAA data gets hit with a $1000 or so fine per person. So if you sell 100 patients' data, you're personally on the hook for $100,000. Your employer pays another cool $10,000/person on top. More of these laws should come with personal liability. HIPAA is the only one I've ever seen people take seriously.
  - AStonesThrow 2y ago
    HIPAA isn’t really a personal privacy regulation at all ... Like other privacy regulation, it’s there to protect the industry and their business/commercial interests. Barriers to access mean less controversy, fewer lawsuits, fewer investigative news stories, fewer insurance disputes. I’d say it’s also designed to reduce contamination or adulteration of data: if every facility needs to do new testing and new evaluation then they can be sure they got the results they need, instead of taking some rando’s word for it. HIPAA isn’t the most onerous barrier to personal access to records, but it’s a huge hassle for someone who wants it opened up for family, friends, and other entities because those forms are onerous. With good transparency in patient portals, authorized users can manage a lot on their own. Also, good luck reading anything but textual notes, because imaging and other medical data is often always distributed in proprietary file formats that don’t simply import into Gimp!
    - dragonwriter 2y ago
      > HIPAA isn’t really a personal privacy regulation at all ... HIPAA as a whole is not. The HIPAA Privacy and Security Rules, which are enforced by a different entity than the rest of HIPAA, are (the bulk of HIPAA is insurance administration rules enforced by the Centers for Medicare and Medicaid Services; the Privacy and Security Rules are personal privacy and information security rules enforced by the DHHS Office of Civil Rights.)
robwwilliams 2y ago
I am trying to think of how genotypes would be used for advertising. 1. Ancestry, but that is about as reliable as a photo and puts a company at far greater legal risk. 2. Actionable SNPs associated with a metabolic oddities. Hmm, that might work for a small number of cases but would probably produce huge backlash. 3. We know who your daddy is. Oh great, thanks so much. I hate you. Any advertiser going these routes will be running right into a brick wall. Can you think of plausible scenarios that make someone a buck without legal repercussions and hate mail?
- Rastonbury 2y ago
  Don't think your reply is arguing in good faith (unless parent was edited) when you basically ignored the implied examples of that comment and made 3 strawmen points
vintermann 2y ago
Sure they do, but it's very hard to market illegal activities in a b2b context. How does 23andMe go about selling data allowing insurers to discriminate, without saying that's what they do? I can think of a few things you could try, maybe. But judging from 23andMe's present state, it's clear that whatever things they tried to monetize customers' DNA info, didn't work out well for them.

robwwilliams 2y ago

To the best of my knowledge use of genetic data is illegal in the USA and several other countries. It has been operational banned (self-imposed) by the life insurance industries in the UK and Australia. This was a hit topic in the late 1990s. Here we are 25 years later with few if any known abuses by the life insurance industry. They have MUCH bigger fish to fry: Do you smoke? What is your income, age, and sex, and perhaps your blood pressure and blood chemistry. Each of those is worth 10X your genotype. (I study actuarial genetics in the UM-HET3 mice and do quite a bit of human genetics related to aging. See this PMID: https://pubmed.ncbi.nlm.nih.gov/36173858/ https://pubmed.ncbi.nlm.nih.gov/36173858/ )