Genetic Non-discrimination Act, a Primer

The Genetic Information Nondiscrimination Act (or, GINA) is set to go into effect next week for employers, according to this NYTimes article. GINA is a godsend for us BRCA-ers, because it means employers can’t say “Well… you might get breast cancer at 40 and not be able to work with us, so buh-bye!” The article is a great primer on provisions set forth in GINA, so if you’re not sure what it entails, I’d suggest a perusal.

I’m not putting down the article, but every time I read something like this I have two reactions:

1) Frustration. I know they have to, for space, but these articles totally boil down genetic testing to one or two nondescript sentences, which capture nothing about the real reason why people get tested or why genetic testing can be a great benefit to someone’s life and health. Then, in the comments, there are inevitably people who say, “Genetic testing is dumb. Why would anyone do it?” Grrr.

2) Worry. If the world turns into Gattaca, I’m going to be like Ethan Hawke. All of us BRCA-ers are going to be like Ethan Hawke. We’ll be at a disadvantage. There is something in our genes that makes us “less-than”, in a genetic health sense. I can’t say that doesn’t scare me a little. What if someday our society DOES discriminate based on genes? That day may not be far off. And I may be considered unfit, even though I’m completely healthy otherwise and I don’t often engage in risky behaviors. Again, grrr.

Does anyone else have these reactions?