Are you safe from your genes?
Or, more importantly, are you safe from your insurance company?
Are you safe from your employer?
For many years one of our intrepid Kossack pols has been trying to get protection for us. Louise Slaughter has come by to tell us about it, most recently here: GINA Finally Passes the House!
GINA, or the Genetic Information Non-discrimination Act is at the plate. For those of you who want to see the full text, here is the Thomas search.
As Louise told us, this bill had passed the House after years of struggle. In the past it had made it through the Senate. The history of this can be found from the Coalition for Genetic Fairness. Here's some:
Legislation on genetic nondiscrimination was first introduced in the House of Representatives 1995 by Rep. Louise Slaughter (D-NY)....
Similar legislation was introduced in the 108th Congress....In the Senate, the bill (S.1053) was introduced by Sen. Olympia Snowe (R-ME) and gained 23 cosponsors. The Senate bill passed 95-0....
In the 109th Congress....In the Senate, Sen. Olympia Snowe (R-ME) introduced the bill (S.306) and it passed 98-0.
But it is hung up right now, in the Senate. The Genetic Alliance--an excellent organization that helps families who are dramatically affected by genetic situations--has begged for help. We need calls, we need letters. Please lean on your Senator today.
Here's the letter from the Genetic Alliance, found on their web page as well:
Help GINA progress through the Senate
Tell the Senate to take action on GINA!
The Genetic Information Nondiscrimination Act, or GINA, (S.358) is on the verge of passing, after 12 long years! The House bill (H.R.493) passed 420-3 on April 25 and the Senate bill has been reported out of committee. We just need the full Senate to vote on the bill to get it to the President’s desk!
Tell your senators to push for GINA to come to the floor for a vote! A list of senators and their contact information is below. Please take a few minutes to tailor the sample letter below on your letterhead and fax it to the Senate. Feel free to insert personal reasons for your support of the bill into the text.
There is power in numbers! Tell your friends, family, coworkers, and other members of your organization to take action now. We must make a big impact on this issue, and if every senator is contacted multiple times, we can make it happen!
Sample Letter
Dear Senator __,
I support the Genetic Information Nondiscrimination Act, or GINA, (S.358). I am writing to ask for your support for this legislation to come to the floor and pass.
It is astounding that this bill, which the Senate has passed unanimously in the 108th and 109th Congresses, has not passed in the 110th yet. The House passed it 420-3 on April 25, 2007. This bill protects all Americans from the misuse of genetic information in employment and health insurance decisions. With these protections in place, Americans will be able to use genetics in medicine without fear of misuse of their genetic information.
More than 140 national patient groups, academic institutions, research centers, companies, women’s organizations, labor organizations, and the millions of Americans endorse this legislation. We represent every sector of society in this nation, and we urge passage of GINA.
Thank you for your time.
Best,
________________
Lists of Senators and their phone numbers is on the web page. Or you can go to Senate.gov for links, email submission, and phone numbers.
Full disclosure: This is my industry--I teach researchers how to use human genome data. However, I am NOT in the testing industry and I do not stand to benefit from this from any sort of diagnostic or clinical financial perspective. I have no gene patents. But I carry genes--some of them not so nice. I have been avoiding breast cancer gene testing out of fear of my insurance company finding out. Despite the death of my mother and the incidence in my sister (before age 50).
This legislation will benefit me by protecting me. It will protect you. It will protect your kids. It will also advance research by getting more people involved in research that they might have avoided otherwise.
Please call. Our descendants are counting on us.
I have seen reports that Coburn (R-OK, but no, not OK) has held this up.
House Approves Bill That Bans Discrimination Based on Genetics
....Sen. Tom Coburn (R-Okla.) has placed a hold on the Senate legislation. According to CQ Today, Coburn said that he and his staff were working on several objections to the measure but would not give more details....
emphasis mine--mem
Whether it is still Coburn that is in our way isn't clear to me--but if anyone from his state would call and report back that would be very interesting....