Genetic Nondiscrimination Bill Almost Law

On May 1, the House approved HR 493, the Genetic Information Nondiscrimination Act (GINA). The bill would prohibit individual insurer from using genetic information to make enrollment or premium/co-insurance decisions. It also would prohibit employers from using genetic information in making hiring, promotion, or termination decisions.

The bill, Rep. Louise McIntosh Slaughter's (D-NY) baby -- or really, adolescent, since it has been 13 years since she first introduced the legislation -- passed the House, 420-3 on April 25.

Reps. Jeff Flake (R-AZ-6th), Ed Royce (R-CA-40th), and Ron Paul (R-TX-14th) were the three holdouts.  It passed the Senate 95-0.

Why is this bill so important?

Consider that more than 90% of Americans are fearful that the results of a genetic test could affect their job. And along with it, their access to health care.

Women are afraid to be tested for the BRCA1 and BRCA2 genes, which increase the likelihood of developing breast or ovarian cancer. People are afraid to learn if they are more likely to develop emphysema, blood clots, Huntington's Disease, prostate cancer...

Without the protection afforded by GINA, few will risk billing their insurance company for a genetic test. Testing will still be available to people of means -- those with the ability to fork over a couple hundred to a couple thousand dollars, enough to circumvent their insurance provider in an attempt to ensure medical privacy. (And here I'll note that GINA does exactly nothing for the nearly 50 million uninsured Americans. That number is so big it hurts to think about it.)

I'm hopeful that GINA will mean my daughter -- two weeks old today -- won't fear genetic testing. I hope that it will give her the opportunity to consider our family history carefully,  to make her decision after weighing medical advice and genetic counseling.

Comments

[jaelithe]

Hmm. I wonder how Ron Paul's presidential campaign supporters feel about the fact that he apparently doesn't want to protect them against discrimination on the basis of their genes?

I'd be interested to hear the reasoning of the holdouts in the House.

[Kyla]

This is important. And genetic tests are not cheap, a single genetic test for my daughter was between $3000-$4000. I'd hazard to say most people cannot afford that sort of thing out of pocket.

[Julie Pippert]

Thank goodness!

[debbie]

Melissa, just the fact that you could cook this post up and produce the figures and facts while managing life as mother to a two-week old blows my mind. Thank you so much for this post.

And, yes, I'm intrigued as to why Ron Paul was a holdout.

Huh. *raises one brow wryly*