5 ms·

Insurers have been barred by law from discriminating based on genetic information since 2008: http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination

by _ihaque 13y ago

Insurers have been barred by law from discriminating based on genetic information since 2008: http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act http://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimi.... Counsyl definitely falls under the scope of HIPAA; we do tests at the request of physicians, so we're like any other lab as far as privacy is concerned. Your employer, parents, or prospective mate would only know about the results if you decide to tell them. It's also important to note exactly what Counsyl is testing: we're look at severe single-gene disorders, things that in most cases cause severe disability or early death. Importantly, if you only have one defective copy of a gene for which we test, you won't show symptoms of the disease. This is not the kind of thing that should affect your employer or insurer. And, if you're a carrier, it's probably something you should discuss with your prospective mate: if he or she is also a carrier for the same disease, there's a 1/4 chance of your child having that severe condition. *edit to add the last paragraph

drakaal 13y ago
GINA is Only for predisposition. Anything that is diagnosed through genetics is fair game. If you use genes to detect that I have something like Fabry Disease which you either have or you do not based on the genes you can be asymptomatic and still have the disease and you will develop it eventually.
drakaal 13y ago
Legally if you fail to disclose that you knew you are a carrier for a severe disease to a prospective spouse prior to marriage it could be grounds for annulment, or a fault divorce. Sorry I don't have the case law at the moment, but I am aware that there was such a case involving Huntington's disease.
- cdjk 13y ago
  Huntington's disease is autosomal dominant, so essentially you're going to get it or not. I don't believe counsyl tests for Huntington's, and probably only tests for recessive traits where you can be a carrier like cystic fibrosis. I can kind of understand that logic with Huntington's but I'd be surprised if it applied to recessive traits as well.
drakaal 13y ago
Your statement about privacy is already suspect since your opening comment talks about sharing that data. The two are mutually exclusive. As soon as your system is sharing, rather than me sharing I have no privacy.
- pyre 13y ago
  It depends on the level of 'sharing.' If it's just statistics (e.g. 10% of people that use our service have discovered X disease), then I don't know how much of your privacy is pierced.
  - _ihaque 13y ago
    Yes, you have the right idea. Check out our (open-access) paper from last fall: http://www.nature.com/gim/journal/v15/n3/full/gim2012114a.html http://www.nature.com/gim/journal/v15/n3/full/gim2012114a.ht...
  - drakaal 13y ago
    I do data mining. Ready here we go. 10% of people who used service discovered they have BrandonWirtz's Disease. Requirements: Male. Primarily Caucasion as primarily limited to Arian Descent. Symptoms onset at 55. Not symptomatic for those with BMI under 22. With this information I can take the 100% and cut the list to 50% that are male. 50% that are caucasion. (25%) Would have already know if they were over 55 so we cut another 25% Strip last names for ones that would not be of the right heritage. Suddenly the eligible candidates are only 12% of the total. I know that 80% of those are the people on that list. That's how mining works. You can't share data anonymously becuase each facet of data allows me more information to piece things together. Sharing has to be opt in. But if it is opt in then it is no longer statiscitally relevant. Because just as an example. People are going to be less apt to share data if they have a disease associated with a stigma. Which will skew the results. [Brandon Wirtz's Disease is an imaginary disease used for demonstration only. I don't have any genes shared with other humans as I am from another planet.]
    - lightcatcher 13y ago

by _ihaque 13y ago

drakaal 13y ago

GINA is Only for predisposition. Anything that is diagnosed through genetics is fair game. If you use genes to detect that I have something like Fabry Disease which you either have or you do not based on the genes you can be asymptomatic and still have the disease and you will develop it eventually.

drakaal 13y ago

Legally if you fail to disclose that you knew you are a carrier for a severe disease to a prospective spouse prior to marriage it could be grounds for annulment, or a fault divorce. Sorry I don't have the case law at the moment, but I am aware that there was such a case involving Huntington's disease.

cdjk 13y ago
Huntington's disease is autosomal dominant, so essentially you're going to get it or not. I don't believe counsyl tests for Huntington's, and probably only tests for recessive traits where you can be a carrier like cystic fibrosis. I can kind of understand that logic with Huntington's but I'd be surprised if it applied to recessive traits as well.

drakaal 13y ago

Your statement about privacy is already suspect since your opening comment talks about sharing that data. The two are mutually exclusive. As soon as your system is sharing, rather than me sharing I have no privacy.

pyre 13y ago
It depends on the level of 'sharing.' If it's just statistics (e.g. 10% of people that use our service have discovered X disease), then I don't know how much of your privacy is pierced.
- _ihaque 13y ago
  Yes, you have the right idea. Check out our (open-access) paper from last fall: http://www.nature.com/gim/journal/v15/n3/full/gim2012114a.html http://www.nature.com/gim/journal/v15/n3/full/gim2012114a.ht...
- drakaal 13y ago
  I do data mining. Ready here we go. 10% of people who used service discovered they have BrandonWirtz's Disease. Requirements: Male. Primarily Caucasion as primarily limited to Arian Descent. Symptoms onset at 55. Not symptomatic for those with BMI under 22. With this information I can take the 100% and cut the list to 50% that are male. 50% that are caucasion. (25%) Would have already know if they were over 55 so we cut another 25% Strip last names for ones that would not be of the right heritage. Suddenly the eligible candidates are only 12% of the total. I know that 80% of those are the people on that list. That's how mining works. You can't share data anonymously becuase each facet of data allows me more information to piece things together. Sharing has to be opt in. But if it is opt in then it is no longer statiscitally relevant. Because just as an example. People are going to be less apt to share data if they have a disease associated with a stigma. Which will skew the results. [Brandon Wirtz's Disease is an imaginary disease used for demonstration only. I don't have any genes shared with other humans as I am from another planet.]
  - lightcatcher 13y ago