Monday, June 2, 2008

Genetic Non-Discrimination Act

About a week and a half ago, President Bush signed the Genetic Non-Discrimination Act.

You can read about it here:

The reason I bring this up is because several people (not doctors) have suggested that I undergo genetic testing, since it is suspected that autoimmune diseases are highly connected to our genes.
Amongst other things, the law protects against discrimination in insurance and employment based on your genetic makeup, should you decide to find out about it. So, with those factors taken out of the equation, why not do it?

It’s just one of many things that I’m not sure about lately.

Is it a necessity or a necessary evil?

The problem is that even if the veil of discrimination is lifted, there is still the fact that I may find out things that I don’t want to know about and have no control over.

Just like the discussion of whether my sister should be tested for the illnesses that I have, is this a prophylactic measure or a stupid one? Won’t it cause more worry than it’s worth? And since science hasn’t perfected itself to the point of absolute certainty, what do the results tell us anyway?

I’d be happy to hear from people that know more about the issue, as I don’t know too much about it. What are the pros and cons? And do we really want to know?


  1. I believe genetics tests are big chance to improve human life and medicine and there should be no administrative obstacles. Just the law has to secure people, who are not lucky. But I am a bit pessimistic. No law or GINA can secure no information leaks. If yes, some other ways for insurance companies could emerge. I am selling disability insurance Ontario and usually you get some bonus, when you prove your good health - actually you are not discriminated for bad results, you are discriminated for not providing the good results.
    Best wishes!

  2. The thing with these diseases is that they aren't preventable, so even if your sister knows she has one, what can she do about it? Instead, she'll be more aware of the warning signs based on your own symptoms, and if she shows those signs, then she can get tested right away, instead of going through the years of guessing that so many of us experience.

    As for genetic testing, the great thing is that your genes aren't changing, so if you're not comfortable with it today, why not wait? Your test results will be the same next month, next year, next decade. Why rush into it?

    This stuff is difficult, confusing, and overwhelming. Why take on extra burdens until you're ready?

    Good luck! I was diagnosed at age 23 and your blog sounds very familiar. I'll just add: it gets better. Ok, "better" could mean a lot of things. I mean, in time, you can learn to get a handle on these things. You can find a balance between your "normal" life and your "ill" life. It's not easy, but it can be done. And you're not alone.