5 ms·

I like things like this for diagnosis. The problem is in how insurance, employers, parents, and prospective mates will view it. GATTACA jumps to mind. Just bec

by drakaal 14y ago

I like things like this for diagnosis. The problem is in how insurance, employers, parents, and prospective mates will view it. GATTACA jumps to mind. Just because you can mine the email on Gmail to find everyone who secretly likes Justin Bieber and market to them doesn't mean you should. My genetics are much the same. Until I can mine them in the privacy of my own home with my own equipment and control what data is shared I won't do it. I don't know if HIPAA governs the privacy of Counsyl, but even at that level of medical privacy I'm not sure I would want it. being disqualified from insurance, or military or being an astronaut because I got a swab of my cheek is not worth it. [edit] fixed Gattaca spelling as mentioned by others.

Pwnguinz 14y ago
I think you meant GATTACA, the movie? To anyone who hasn't seen it, fantastic movie. Highly recommended. Re: your other points. I think your concerns are well placed, however this isn't something that's specific to Counsyl; 23andme presumably also carries the same risks. At any rate, I do believe they hold your genetic information to the same standards as required in HIPAA.
- bayesianhorse 14y ago
  There is growing evidence that genetic testing to the extend it is used in GATTACA is impossible. For example you can't predict a baby's future height. Sure, you can tell a normal distribution from genetics which is narrower than the distribution of the general population, but it's not as predictive as people might assume. Genetic data has proven to yield a lot less information than was expected. That might change in the future, but I don't believe health insurance companies could make a business case for genetic discrimination even if they were allowed too.
  - Pwnguinz 14y ago
    I agree with you completely. I was merely pointing out that it was a great sci-fi movie worth watching. Not as some sort of foreshadowing of future societal outcome. Plus, what's portrayed in the movie (i.e. discrimination based on genetics) is disallowed by law, at least in California.
_ihaque 14y 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 14y 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 14y 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 14y 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.

by drakaal 14y ago

Pwnguinz 14y ago

I think you meant GATTACA, the movie? To anyone who hasn't seen it, fantastic movie. Highly recommended. Re: your other points. I think your concerns are well placed, however this isn't something that's specific to Counsyl; 23andme presumably also carries the same risks. At any rate, I do believe they hold your genetic information to the same standards as required in HIPAA.

bayesianhorse 14y ago
There is growing evidence that genetic testing to the extend it is used in GATTACA is impossible. For example you can't predict a baby's future height. Sure, you can tell a normal distribution from genetics which is narrower than the distribution of the general population, but it's not as predictive as people might assume. Genetic data has proven to yield a lot less information than was expected. That might change in the future, but I don't believe health insurance companies could make a business case for genetic discrimination even if they were allowed too.
- Pwnguinz 14y ago
  I agree with you completely. I was merely pointing out that it was a great sci-fi movie worth watching. Not as some sort of foreshadowing of future societal outcome. Plus, what's portrayed in the movie (i.e. discrimination based on genetics) is disallowed by law, at least in California.

_ihaque 14y 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 14y 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 14y 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 14y 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.