A step against (gene) discrimination

I’m back!

Actually, I’ve been back in the country since Sunday night. I had an incredible whirlwind of a time in London. It was great to spend some time with my brother, see an old friend, and even spend a day with my parents (if I’m not mistaken, this is my Dad’s first time in Europe). And I’ve been meaning to write about the trip in detail- I’ve started the post a few times, and there’s just too much. (Plus, my first day or two back I was so tired from the trip, jet lag, and work, that my sentences made even less sense than usual.) I may come back and write about it later, but for now, here are just a few pictures (I seem to be having trouble inserting pictures…  I’ll try again in the next post).

Anyway, as the title of this post suggests, this story on NPR caught my ear today. The Senate finally passed a bill to outlaw discrimination based on genetics. This means that, legally, no one can be fired or refused insurance coverage based on a genetic predisposition to a disease or condition.

While it seems a little ridiculous that this could have ever been a legal practice, for years people have avoided getting genetic testing, or have hidden the results from their doctors, for fear of losing their insurance or employment. At best, this leads to ignorance or knowledge going to waste. At worst, it can cause serious health problems that could have been easily prevented. For a good example, check out this NY Times article.

The question of genetic testing- whether to have it done, what to do with the information- has touched my own family. My mother had breast cancer 13 (?) years ago; in the meantime, one of her sisters has died of metastasized breast cancer, and another is fighting cancer right now. Although I can guess from this pattern that my risk of breast cancer may be higher than most, I (at the recommendation of a doctor) asked my mother to undergo genetic testing for the BRCA genes. My mother was resistant, among other reasons, because of the possible consequences now addressed by this bill. Her doctor even told her outright that, should the test be positive, I should avoid mentioning it to my own doctors, so as not have it on my medical record before I secure insurance.

Fortunately, surprisingly, my Mom’s tests came back negative, so this issue never came up (I still don’t have insurance, but that’s another matter). And now, hopefully, it never will.

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