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GINA passes the Senate

I haven’t blogged in the last few days. A LOT has been going on. It was a hellish week at work and I’ve been trying to get ready to go to the NIH.

I was very bummed that I didn’t get to blog about the Genetic Information Non Discrimination Act the day it actually passed the Senate. What an achievement! It’s been more than a decade in the making.

We’re not 100 percent there yet, but it was a major milestone.

The House version of the bill is slightly different than the Senate’s version, so they’ll have to have a committee to work out some of those details, and then it’s on to George W.’s desk. Even then, technically I doubt that will be the end.

I was involved in the passing of Braille literacy legislation back in the 1990s. What I learned from observing that develop is that getting the actual needed law passed is only the first step.

Once GINA passes we’ll have the tool we need.

The next step will be to see how the government implements that tool. What regulations get written to implement the law? In the case of the Braille literacy bill, the regulations threatened to untangle everything that had been achieved by the law. So, I hope that we that have backed the bill don’t think our work is done the minute George’s pen makes its way across the page.

The next step will be the courts. The law has to be used to really prove its muster. In the case of the Americans With Disabilities Act the courts really defined the boundaries of the law.

Don’t get me wrong. If I’d been able to, I would have been celebrating big time – but we’ll likely have to defend these newfound legal protections. Maybe I'll get to celebrate next week while at NIH.

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