* The Genetic Information Nondiscrimination Act |
* What you can do |
* Joanna’s Law |
* What you can do

The Genetic Information Nondiscrimination Act (GINA)

GINA is the first federal bipartisan legislation that would prohibit health insurance and employment discrimination on the basis of genetic information. In October 2003 the bill was passed in the Senate by a 95 to 0 unanimous vote; however, the bill was stalled in the House of Representatives, and was never voted into law. In 2005 and 2006, the bill was reintroduced and again passed unanimously in the Senate. President Bush subsequently issued a supportive Statement of Administrative Policy. The corresponding House bill never reached the house floor. In 2007 the bill was introduced and passed in the House of Representatives but was never put to a Senate vote due to a hold by Senator Coburn.

FORCE has been working with the Coalition for Genetic Fairness in order to assist in the passage of this important bill. The coalition is composed of nonprofit organizations, professional societies, and corporations dedicated to the principle that people should not be discriminated against based on a genetic predisposition to or family history of disease.

The Coalition for Genetic Fairness is working diligently to see GINA (H.R. 493, S358) become a federal law in 2007. On April 25 of this year H.R. 493 was passed by the House of Representatives but has yet to be voted on by the Senate.

With regard to health insurance discrimination, the Act will:

* prohibit enrollment restriction and premium adjustment on the basis of genetic information;
* prevent health plans and insurers from requesting or requiring that an individual take a genetic test;
* prevent health plans and insurers from pursuing or being provided information on predictive genetic information or genetic services prior to enrollment – the time when this information is most likely to be used in making enrollment decisions;
* cover all health insurance programs, including those regulated by the federal government under ERISA, state-regulated plans, Medigap, and the individual market.

With regard to employment discrimination, the Act will:

* prohibit discrimination in hiring, compensation, and other personnel processes;
* prohibit the collection of genetic information, and allow genetic testing only to monitor the adverse effects of hazardous workplace exposures;
* require genetic information possessed by employers to be confidentially maintained and disclosed only to the employee or under other tightly controlled circumstances;
* cover employers, employment agencies, labor organizations, and training programs.

(This summary was prepared by the staff of the Senate Committee on Health, Education, Labor and Pensions.)

What you can do

* Join the Coalition for Genetic Fairness to receive updates about the Genetic Information Nondiscrimination Act.
* Help to ensure genetic information protections for all Americans
Call Senate Majority Leader Senator Reid and ask him to take action on GINA.

The Genetic Information Nondiscrimination Act, or GINA, (S.358) provides important federal protections against the misuse of genetic information by employers and health insurers. The bill has bipartisan support and has passed the House of Representatives, but we must push GINA to success in the Senate for it to become law. The best alternative is to get GINA on the Senate floor for a vote. Senator Reid, the Senate Majority Leader, can make this happen, but only if he hears about how important GINA is to all Americans.

Help to make GINA one of Senator Reid’s priorities. Call his office in Washington, DC at 202-224-3542 and tell his staff that you want GINA (S.358) to come to the floor for a vote. A sample script is provided below.

My name is _____. I am calling to ask Senator Reid to bring the Genetic Information Nondiscrimination Act (S.358) to the Senate floor for a vote. This legislation provides fundamental protections against the misuse of genetic information in health insurance and employment decisions. The bill passed the House in April 2007 by a 420-3 vote and unanimously passed the Senate in the 108th and 109th Congresses. I encourage Senator Reid to take swift action to see this legislation to success.

To maximize your impact, call your own senators and asking them to encourage Senator Reid to take action on this legislation. You can find your senators’ names and contact information at: http://www.senate.gov/general/contact_information/senators_cfm.cfm A sample script is below.

My name is _____. I am from [name of your town] and I am calling to ask Senator [last name of senator] to encourage Senator Reid to bring the Genetic Information Nondiscrimination Act (S.358) to the floor. This legislation provides fundamental protections against the misuse of genetic information in health insurance and employment decisions. The bill passed the House in April 2007 by a 420-3 vote and unanimously passed the Senate in the 108th and 109th Congresses. I encourage the Senate to take swift action to see this legislation to success.

Johanna’s Law

Johanna’s Law: The Gynecologic Cancer Education and Awareness Act would authorize a national gynecologic cancer early detection and awareness campaign directed at women and their physicians. Sponsored by Representatives Rosa DeLauro (D-CT), Kay Granger (R-TX), Darrell Issa (R-CA), and Sander Levin (D-MI) and endorsed by organizations representing over 300,000 physicians, nurses, cancer survivors and women, Johanna’s Law would create a federal campaign of gynecologic cancer education designed to improve early detection.

What the bill will do:

* The bill would authorize a national gynecologic cancer early detection and awareness campaign directed at women and their providers. National Public Awareness Campaign. The Secretary of the Department of Health and Human Services (HHS), would carry out a national campaign to increase women’s awareness and knowledge of gynecologic cancers. Activities would include:
o Maintaining and distributing a supply of written materials that provide information to the public about gynecologic cancers, and;
o Developing and placing public service announcements encouraging women to discuss their risks for gynecologic cancers with their physician, and informing the public about the availability of written materials and how to obtain them.
* Demonstration Grants for Outreach and Education. HHS will award demonstration grants to local and national non-profits to test different outreach and education strategies, including strategies directed at providers, women and their families. Priority would be given to groups with demonstrated expertise in gynecologic cancer education, treatment, or in working with groups of women who are at especially high risk. The proposals should establish linkage with providers, hospitals, payers, and state health departments.

What you can do

There are many ways to make your voice heard on Capitol Hill. Letters and telephone calls to the Congressional representative and Senators who represent your district or state are among the most effective. Legislators do care about the concerns of the constituents who vote them in and out of office and will often decide to co-sponsor legislation in direct response to calls and letters from constituents of theirs that have asked for that support. For detailed information on contacting your elected officials about Johanna’s Law, see the Johanna’s Law website.