genetic testing in congress

This is good article about what's being debated in congress at the moment. A bill discussing that employees HAVE to disclose their genetic testing to the employer. It might even mean that you have to do some genetic testing if your employer asks for it.

Over all, I have a couple of thoughts on the genetic testing things that's been going on since I saw Gattaca back in the early days of the testing. (don't worry, I can back my worries up with university courses in medical genetics and genetic counselling, so not only dystopian scifi.)

Anyhow, the main issue (according to me) with genetic testing as it is done and stored today is

• there is an overstating from the companies what the results mean (we really don't know that certain how much the genes mean since there are a lot of other factors at play like epigenetics, penetrance and redundancy)
• there is currently issues with how the results are stored (23andme is not anonymous as you might think)

and then the biggest issue - which may or may not be exacerbated in the United States of America since there is no universal health care but using insurance companies that will use any tests to try and lower their payments for care.

• IF you have a genetic test, you HAVE to disclose it and people will act on it.

It's a little bit like the old thing, if you don't check for cholesterol you will never be deemed "bad cholesterol" and get punished for it. The system is made for "being healthy" but also for not checking since you will get punished if you do check.

Why I have an issue with it (in general)? Since the market for genetic testing is not as regulated as one would want. Never mind that there are never any numbers of "false positives or false negatives" being listed together with the tests. And then of course, "that we don't know what this allele really mean"... it makes it a nice mix of "unknown knowns and arbitrary guidelines" that is left to (mostly) the insurance companies to decide what to do with it. This has implications for employers too, if they provide health insurance for their employees... just as the article points out.

If you want to really get scared, please take a look at the new diagnosis kits for early prenatal screenings. I agree that a lot of it is probably straight forward, however - and this is the really tricky part - when the result doesn't fall in the "clearly normal" or "clearly abnormal" categories, then the false positive/negative issues really come out to play. Although, "it's a test result and a lot of people and companies will say that they rely on the test result"....