Monday, May 5, 2008

GINA

Who is she and why is she all up in my business?

Well, guess what. She's not all up in your business. GINA stands for:

The "Genetic Non-discrimination Act of 2007-2008"

And why the hell should anyone care about GINA? Because, as our knowledge and understanding of disease states continues so do the efforts of the insurance industry. See, if I choose to, say, undergo genetic testing to see if I carry the genetic marker for breast cancer, my future employers could find out about that information and deny me a job if I test positive for that marker.

Oh, gosh, that wouldn't happen, this is the land of the free and home of the brave! Pick yourself up by your bootstraps and make something of yourself!

Think of health insurance just as your would home owners insurance. As a homeowner, if I buy property in an area that's a known flood plane, I should have to pay more for my homeowners insurance, right? Or, what if I buy a vacation home in Biloxi, Mississippi? Well, that's a known hurricane prone area. My insurance should be more.

But what if...

What if you have a family history of breast cancer? And in order for your family to avail themselves of your employer's insurance plan, you must subject your children to the test that will determine if your infant children carry the genetic marker that predetermines their susceptibility to that disease? The insurance company could deny coverage. Or make your premium higher than families who DON'T carry that marker.

This seems unimaginable.

It's really not.

Think of Sickle Cell Anemia. What about diabetes?

And in my own home...hemophilia. My boys have hemophilia. That's no secret. Maybe I should have kept it a secret. Maybe we should have played it "close to the vest". But I didn't know, prior to the birth of my oldest boy, that I carry the DNA that prevents my boys' livers' from manufacturing Factor 9.

After my oldest was born and continued to bleed from a routine after birth procedure. (o.k., I suck because he was circumcised, but bleeding from that could have saved his life should he have fallen or spontaneously bleed later on in his infancy) He was diagnosed and in an effort to identify the etiology of the disorder, his DNA and mine own DNA were studied and we learned that mine own DNA is twisted (yeah, yeah, if you know me it's no shock).

But prior to this, I had no idea that I was an insurance liability. We do know, now, that it's fortunate that as a child I didn't require any invasive survery.

However, once my DNA and my son's DNA were mapped, without a law like GINA, an insurance company could theoretically deny medical coverage to any further offspring I might have. They could also deny my siblings and their offspring. After all, a family history of any illness might suggest some sort of genetic weakness.

It all gives me a headache.

But I'm damn glad that GINA passed.

3 comments:

Michael said...

I'm glad it passed too. I just hope it is adhered to and those who abuse it are punished. Our social-security numbers were never supposed to be used to identify us either but now all sorts of medical information is freely exchanged with that identification on the basis that it is a number and not a name. As if it all didn't tie directly to a living, breathing human being!

Canada life insurance said...

I don't want to be pessimist, but I am selling disability insurance in Canada so I know, that insurance companies will be forced to find ways how to avoid it (because they want to survive). If you twist the whole thing, I mean if you don't "punish" the bad tests, but "reward" good ones, the result will be the same and legal - it's similar to medical tests. There have to be other way, how to protect affected people.
Lorn

mama o' the matrices said...

me, too. Finally!