Reps. Biggert, Slaughter, Ney & Eshoo Introduce Genetic Information Non Discrimination Act

Members Lead Growing Bipartisan Effort Aimed at Promoting Medical Advancements and Protecting Consumers' Rights

Washington, DC - Reps. Judy Biggert (R-IL), Louise M. Slaughter (D-NY), Bob Ney (R-OH) and Anna Eshoo (D-CA) have introduced legislation that will prohibit improper use of genetic information in workforce and insurance decisions.  Their bill, The Genetic Information Non-Discrimination Act, will provide appropriate protections of genetic information to encourage both the public and science to take full advantage of the important opportunities genetic testing offers in revolutionizing quality health care in our nation.  

"We will never unlock the true promise and benefits of sequencing the human genetic code if Americans are too paranoid to get tested," said Rep. Biggert.  "As technology rapidly changes, so must federal law. Only comprehensive federal legislation can guarantee everyone in the United States protection from genetic discrimination."

"For nearly a decade, I have championed this legislation because the American people have a right to expect that when they make the decision to undergo genetic testing, their private genetic information will be protected from abuse," Rep. Slaughter said.  "Two Presidents, Two Senates, and legions of Americans have endorsed this bill.  Its time for the House to act," she added.

"The Genetic Information Non-Discrimination Act of 2005 brings public policy up-to-date with science and ensures that every American can benefit from our scientific progress without the worry of genetic discrimination," said Rep. Eshoo.

One of the most significant scientific accomplishments in history has been sequencing the human genetic code - a breakthrough that is already transforming the battle against a broad range of medical conditions.  As a result, scientists have identified genetic markers for a variety of chronic health conditions and this increases the potential for early treatment and prevention.  Genetic testing can improve lives by providing information on how to avoid future health problems, and cope more effectively with conditions and associated costs.

"Currently, there are over 15,500 recognized genetic disorders which affect 13 million Americans. The coming years hold tremendous promise as a flood of new tests and treatments reach the marketplace," said Rep. Ney.

Unfortunately, the ability to predict disease through genetic testing and family history opens the door for discrimination, particularly in the employment and health insurance industries.  Such a threat has deterred the public and scientific community from taking full advantage of the important opportunities which genetic information provides. The Genetic Information Non-Discrimination Act would make it illegal for health insurers and employers to discriminate based solely on an individual's genetic information. 

"A variety of protections exist in current federal and state laws to prevent employers and insurers from denying job opportunities or health coverage on the basis of genetic information. The Genetic Information Non Discrimination Act will specify that genetic information must be protected in both insurance and employment settings," said Rep. Slaughter.

"Without appropriate protections to encourage providers, the health care community and the public to embrace genetic testing, the health care arena will be incapable of taking full advantage of the important opportunities resulting from the advancement of genetic information and technology," said Rep. Eshoo

"This bill provides common sense protections for both consumers and companies to protect against the misuse of genetic information," Biggert said. "The administration has expressed its strong support, and the U.S. Senate unanimously passed an identical bill last month.  The signs are clear - this bill's time has come."

"With this landmark legislation, individuals who want to learn about their healthcare risks will not face the threat of discrimination from employers and insurance companies. It is vitally important that as we continue to explore the intricacies of human genetics, we never discount the impact these discoveries have on the human life," said Rep. Ney

The Genetic Information Non Discrimination Act includes a strong group of 37 bipartisan cosponsors and is identical to S. 306, which passed the Senate on February 17, 2005 by a vote of 98-0.  It has earned the support of the Coalition for Genetic Fairness and members of the Personalized Medicine Coalition, and it was the subject of a strong Statement of Administrative Policy (SAP), issued by the Bush Administration. The bill is expected to be referred to the House Committee on Energy and Commerce and the House Committee on Education and the Workforce.

Current Co-Sponsors: