This week! Senate addresses genetic nondiscrimination

After considerable efforts from hundreds of organizations trying to protect your genetic privacy, it's time for you to act.

GINA, the Genetic Information Nondiscrimination Act, is finally supposed to be debated on the Senate floor this week, perhaps on Monday the 21st (April). Here's how you can help:

1. To find out whether one or both of your senators is a cosponsor, check at
http://thomas.loc.gov/cgi-bin/bdquery/z?d110:SN00358:@@@P

2. If your senator is a cosponsor, call and thank your senator for supporting this bill. Phone numbers are easy to find at http://geneticalliance.org/senator.list

3. If your senators are not cosponsors, call (or send an e-mail) and ask them to support GINA. You can find their names and contact information at http://geneticalliance.org/senator.list

Sample script

My name is (YOUR NAME) and I am a constituent of (NAME OF SENATOR). I am calling to ask for (NAME OF SENATOR)’s support for the Genetic Information Nondiscrimination Act, or GINA, and all the procedural motions needed to support this legislation. This legislation provides fundamental protections against the misuse of genetic information in health insurance and employment decisions. It is vital for all Americans to have these basic protections. Thank you!

You can also help by doing the following:

1) Call Senator Reid at 202.224.3542 and thank him for his support of GINA.

Sample script

My name is (YOUR NAME) and I am calling to thank Senator Reid for his leadership on the Genetic Information Nondiscrimination Act, or GINA. I would like to encourage him to take swift action to ensure GINA’s success. Thank you!

2) If you are able to fax a letter, take this sample letter, personalize it on your own letterhead, and send it to policy@geneticalliance.org or fax it to 202.966.8553. Both organizations and individuals are encouraged to send letters. The Coalition for Genetic Fairness will collect all the letters and make sure the Senate gets them.

Sample letter

DATE

Dear Senators,

I want to encourage you to support the Genetic Information Nondiscrimination Act (GINA) and all the procedural motions necessary to ensure this bill’s success.

SHARE ABOUT YOU, YOUR ORGANIZATION AND WHY GINA IS IMPORANT TO YOU.

The current lack of federal legal protections against the misuse of genetic information has restricted individuals’ access to health information and clinical trials. Fear of the misuse of genetic information limits access to genetic tests. Refusal to utilize effective genetic tests hinders the ability of individuals to learn important medical information, which they could use to proactively manage their health. Fear of discrimination also causes a large number of people to opt out of clinical trials. This lack of participation in research has a negative impact on researchers, clinicians, and industry, slowing the research and development process for targeted drugs and treatments. In order to fully promote personalized medicine and the use of genetic information in healthcare, we must pass GINA.

I am encouraged by the Senate’s record on this legislation, having passed it unanimously in the 108th and 109th Congresses. In addition, the House of Representatives passed GINA by an astonishing 420-3 vote last year. This legislation has strong bipartisan support and the backing of hundreds of organizations including disease advocates, industry, academia, clinicians, researchers, and community groups.

Thank you for your leadership on this issue. I look forward to working with you to have GINA pass swiftly.

Sincerely,

YOUR NAME

Thanks for your help,

Marie Godfrey, PhD

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