5 ms·

My primary concern with these are: what will it mean in a possible future to know your risk profile, and your ability to get/maintain health insurance, also wit

My primary concern with these are: what will it mean in a possible future to know your risk profile, and your ability to get/maintain health insurance, also without having to pay premiums. I live in the Netherlands, so probably not too much, but US could be different, and who knows what the future holds. Anyway, this makes me less/not want to take them...

carbocation 3y ago
GINA should protect you against this (for health insurance) in the US but it does not necessarily extend to other forms of insurance.
- deleted 3y ago
  [deleted]
- kulahan 3y ago
  GINA needs to be much, much stronger for me to feel safe. There's a lot of potential money to be made from genetic information.
  - ethbr1 3y ago
    There's a lot of money to be made from a lot of enriched genetic information. Is there a lot of money to be made from one individual's genetic information?
    - rlabrecque 3y ago
      yes.
autoexec 3y ago
I wonder if this could keep you from even being hired for a job. Given two otherwise equal candidates I can imagine some companies may wish to choose the one which doesn't have a risk for a major cancer.
- dragonwriter 3y ago
  It could be, though in the US this type of thing has been anticipated, hence the Genetic Information Non-Discrimination Act of 2008.
  - ethbr1 3y ago
    And critically, that's banned at common points of use, rather than collection. Which I think is more important given how leaky a sieve prohibiting the multitudinous hydra that collection is. Although I wouldn't be sad to see strict laws around genetic info storage too. Toxic waste, etc.
loeg 3y ago
It shouldn't be a problem in the US. The ACA requires insurers to insure people with pre-existing conditions. (And GINA is also relevant here, as sibling mentioned. I was struggling to remember its name.)
- chimeracoder 3y ago
  > It shouldn't be a problem in the US. The ACA requires insurers to insure people with pre-existing conditions. The ACA requires insurers to cover people under the age of 65 with pre-existing conditions and, more importantly, requires them to provide coverage at the same prices regardless of those conditions (they can only set price using a few pieces of information: age, zip code, smoking status, etc.). However, there are a lot of ways that insurers already skirt that second part, such as offering "discounts" to patients for certain elections which are strongly negatively correlated with various pre-existing conditions. Furthermore, the ACA has seen a number of challenges over the last few years - most recently, the requirement to cover preventive care at no cost to the patient was struck down a few months ago. There's plenty of reason to suspect that this provision will be challenged in the future as well, and could easily be overturned.
  - lotsofpulp 3y ago
    > However, there are a lot of ways that insurers already skirt that second part, such as offering "discounts" to patients for certain elections which are strongly negatively correlated with various pre-existing conditions. Can you give any examples?
  - EvanAnderson 3y ago
    I agree with you re: the ACA hanging around unscathed. That seems like a bad gamble. Striking it down completely seems politically unlikely, but then there's Roe v. Wade.
  - Wohlf 3y ago
    They aren't skirting anything, discounts were explicitly written in to the ACA to encourage behaviors the government and insurance companies both wanted.
deleted 3y ago
[deleted]
marc__1 3y ago
In the USA there is The Genetic Information Nondiscrimination Act from 2008 that bars insurance discrimination based on your genes. I assume this will become a landmark law in the next 50 years as society becomes familiarized with routine blood (I mean gene) tests to drive preventive care to the next level https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination https://www.genome.gov/about-genomics/policy-issues/Genetic-...
- deleted 3y ago
  [deleted]
pfisherman 3y ago
The sci-fi use case is that an prognostic / diagnostic / active learning agent pulling information from EHRs would use this as a prior. More low tech is that you and your physician are more vigilant when it comes to monitoring or testing for certain types of cancer if you have a high impact onco-variant. Keep in mind that prognosis for cancer improves dramatically when you can detect it early.
- Gibbon1 3y ago
  Even more sci-fi might be drugs that can mitigate the risk. Notable is the recent cocktail of drugs that coax the defective protein in CF to functioning better. There is one cancer gene I know that causes people to develop polyps in their intestines which then go on to become cancerous. Imagine a drug that stops that.
  - pfisherman 3y ago
    One of the weird things about oncogenes that I have observed is that there is a balance. Perturb them too far one way and you get cancer. Perturb them too far the other and you get a developmental disorder. This is not at all rigorously documented or studied. Just an anecdotal observation.

carbocation 3y ago

GINA should protect you against this (for health insurance) in the US but it does not necessarily extend to other forms of insurance.

deleted 3y ago
[deleted]
kulahan 3y ago
GINA needs to be much, much stronger for me to feel safe. There's a lot of potential money to be made from genetic information.
- ethbr1 3y ago
  There's a lot of money to be made from a lot of enriched genetic information. Is there a lot of money to be made from one individual's genetic information?
  - rlabrecque 3y ago
    yes.

autoexec 3y ago

I wonder if this could keep you from even being hired for a job. Given two otherwise equal candidates I can imagine some companies may wish to choose the one which doesn't have a risk for a major cancer.

dragonwriter 3y ago
It could be, though in the US this type of thing has been anticipated, hence the Genetic Information Non-Discrimination Act of 2008.
- ethbr1 3y ago
  And critically, that's banned at common points of use, rather than collection. Which I think is more important given how leaky a sieve prohibiting the multitudinous hydra that collection is. Although I wouldn't be sad to see strict laws around genetic info storage too. Toxic waste, etc.

loeg 3y ago

It shouldn't be a problem in the US. The ACA requires insurers to insure people with pre-existing conditions. (And GINA is also relevant here, as sibling mentioned. I was struggling to remember its name.)

chimeracoder 3y ago
> It shouldn't be a problem in the US. The ACA requires insurers to insure people with pre-existing conditions. The ACA requires insurers to cover people under the age of 65 with pre-existing conditions and, more importantly, requires them to provide coverage at the same prices regardless of those conditions (they can only set price using a few pieces of information: age, zip code, smoking status, etc.). However, there are a lot of ways that insurers already skirt that second part, such as offering "discounts" to patients for certain elections which are strongly negatively correlated with various pre-existing conditions. Furthermore, the ACA has seen a number of challenges over the last few years - most recently, the requirement to cover preventive care at no cost to the patient was struck down a few months ago. There's plenty of reason to suspect that this provision will be challenged in the future as well, and could easily be overturned.
- lotsofpulp 3y ago
  > However, there are a lot of ways that insurers already skirt that second part, such as offering "discounts" to patients for certain elections which are strongly negatively correlated with various pre-existing conditions. Can you give any examples?
- EvanAnderson 3y ago
  I agree with you re: the ACA hanging around unscathed. That seems like a bad gamble. Striking it down completely seems politically unlikely, but then there's Roe v. Wade.
- Wohlf 3y ago
  They aren't skirting anything, discounts were explicitly written in to the ACA to encourage behaviors the government and insurance companies both wanted.

deleted 3y ago

[deleted]

marc__1 3y ago

In the USA there is The Genetic Information Nondiscrimination Act from 2008 that bars insurance discrimination based on your genes. I assume this will become a landmark law in the next 50 years as society becomes familiarized with routine blood (I mean gene) tests to drive preventive care to the next level https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination https://www.genome.gov/about-genomics/policy-issues/Genetic-...

deleted 3y ago
[deleted]

pfisherman 3y ago

The sci-fi use case is that an prognostic / diagnostic / active learning agent pulling information from EHRs would use this as a prior. More low tech is that you and your physician are more vigilant when it comes to monitoring or testing for certain types of cancer if you have a high impact onco-variant. Keep in mind that prognosis for cancer improves dramatically when you can detect it early.

Gibbon1 3y ago
Even more sci-fi might be drugs that can mitigate the risk. Notable is the recent cocktail of drugs that coax the defective protein in CF to functioning better. There is one cancer gene I know that causes people to develop polyps in their intestines which then go on to become cancerous. Imagine a drug that stops that.
- pfisherman 3y ago
  One of the weird things about oncogenes that I have observed is that there is a balance. Perturb them too far one way and you get cancer. Perturb them too far the other and you get a developmental disorder. This is not at all rigorously documented or studied. Just an anecdotal observation.