Genetic Anti-Discrimination Bill Clears Congress

With this act, Americans won't have to worry about their jobs or their health insurance being taken away because of the genes they inherited.

Genetic Anti-Discrimination Bill Clears Congress Washington, Thurs., May 1, 2008 - The House passed today the Genetic Information Nondiscrimination Act (GINA) by a vote of 414 to 1. The act will protect Americans against discrimination based on their genetic information when it comes to health insurance and employment. The Senate unanimously approved the legislation last week. It's anticipated that President Bush will sign the bill soon. The long-awaited measure, which has been debated in Congress for 13 years, will pave the way for people to take full advantage of the promise of personalized medicine without fear of discrimination. Statement from Francis S. Collins, M.D., Ph.D., Director, National Human Genome Research Institute National Institutes of Health Department of Health and Human Services 0n Passage of Genetic Information Nondiscrimination Act of 2008 by the U.S. House of Representatives on May 1, 2008 It is a great pleasure for me to be standing here today, a day when Congress has finished its work on the Genetic Information Nondiscrimination Act (GINA) of 2008 and is sending it to the President for signature. This is a great gift to all Americans. It will make it safe for Americans to benefit from the medical results of the Human Genome Project, in which they invested so much. It will make it safe to have their genes examined without fear that they may be discriminated against in employment or health insurance. This is a great day. I want to thank the bill's champions in the House of Representatives who have worked on this issue for so many years, especially Rep. Slaughter and Rep. Biggert, and the many committee chairmen and others in leadership who have worked to make this day possible. I also want to thank the leadership in the U.S. Senate, especially Sen. Kennedy and Sen. Snowe, who have championed the bill in their chamber. I also want to thank my colleagues in the department: Secretary Michael Leavitt who has been a strong supporter of the need for the legislation, especially as it supports his personalized medicine initiative, which clearly is the future of medicine. And NIH Director Elias Zerhouni who has worked tirelessly to explain why it is so important to support the bill and whose own vision of the future of medicine is one that is predictive, personalized, pre-emptive and participatory. And, of course, my fellow institute and center directors who also have supported GINA. We are living in a remarkable time when it is becoming possible to look into our own genetic makeup to predict the ills to which we may be at risk, to prevent many diseases from occurring and to design treatments based on our DNA blueprint that will both effectively treat the illnesses while avoiding undesirable side effects. Finally, I want to thank President Bush, who has been a strong supporter of legislation to protect individuals from genetic discrimination for many years. When he came to visit NIH last year, he called on Congress to send him a bill that he could sign. And now, with the passage of this legislation, I look forward to that day soon when he gives all Americans the protection they need to freely participate in genomic medicine. And we know these protections are needed. In a survey only this past January, more than 4,500 Americans were asked about their attitudes regarding genetic testing. Ninety-three percent said an employer should not be allowed to use genetic information to make decisions about hiring or promoting a person and that a health insurer should not be allowed to use genetic information to deny insurance or charge higher prices. More than three-quarters of those surveyed by the Genetics and Public Policy Center at Johns Hopkins University said there should be a law to prevent such discriminatory practices. Now they have it. This bill could just as well be known as the bill to protect people with DNA, and that would be all of us! Since each of us has dozens of genetic variations that may put us at risk for disease, we all would have had a reason to be concerned about the possible misuse of genetic information. With this act, Americans won't have to worry about their jobs or their health insurance being taken away because of the genes they inherited. This is a momentous day. Thank you, members of the U.S. Senate and the U.S. House of Representatives, for giving a wonderful gift to the American people: protection from genetic discrimination.

PASS HISTORY OF THIS IMPORTANT BILL

What is theGenetic Information
Nondiscrimination Act

The Genetic Information Nondiscrimination Act [H.R. 493, S. 358] is a bill that will prohibit discrimination on the basis of genetic information with respect to health insurance and employment. It was introduced to establish basic legal protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies that will result from the scientific advances in the field of genetics. It would also prevent health insurers from denying coverage or adjusting premiums based on an individual's predisposition to a genetic condition, and prohibit employers from discriminating on the basis of predictive genetic information. Additionally, such legislation would stop both employers and insurers from requiring applicants to submit to genetic tests, maintain strict use and disclosure requirements of genetic test information, and impose penalties against employers and insurers who violate these provisions.

How can you help!
Ask your representative and senators to cosponsor

The Genetic Information Nondiscrimination Act (GINA) has been introduced in Congress.   You can help to build support for this important bill by reaching out to your representative and senators and asking them to cosponsor GINA.
Example of letter:

Dear Your Senator:
I am writing/calling to ask you to cosponsor the Genetic Information Nondiscrimination Act. This bill protects Americans from the misuse of genetic information in employment and health insurance decisions.  Many Americans forgo beneficial testing due to fear that they may be discriminated against from abuse of their genetic information.  Tell your story briefly and why you are personally concerned about this cause. (CADASIL is a genetic)

I hope I can count on NAME OF ELECTED OFFICIAL’S support on this important matter.

What is the status of the bill?

US GENETICS BILL BLOCKED AGAIN
August 2007 

US Senator Tom Coburn is single handedly blocking the passage of a bill through the Senate that aims to protect people from genetic discrimination. Coburn (Republican, Oklahoma) is using a legislative tactic called a hold to block a Senate vote on the Genetic Information Nondiscrimination Act (GINA), which was passed in April by the House of Representatives on a vote of 420 to 3 (see Nature 447, 14–15; 2007). The bill would make it illegal for employers or insurers to use genetic information in hiring, firing, promotion or insurance coverage decisions. President George W. Bush has promised to sign the bill into law should it reach his desk. “I believe the bill, as drafted, contains unintended consequences,” Coburn wrote in a 1 August letter to his constituents, who have since deluged his office with complaining letters, e-mails and phone calls. “Congress has both the moral and legal responsibility to pay attention to details and get them right.  I want to assure you that my hold on GINA is not because I oppose the bill’s purpose, but because I am concerned about its lack of precision.”

Coburn, who has holds on 87 bills, voted for essentially the same bill when the Senate passed it unanimously in 2005. At that time, both the House and Senate were controlled by republicans, but the House refused to bring the bill to a vote. With Democrats now in charge of both, the bill is just one senator away from becoming law. Coburn wants changes in the bill that would make it harder for victims to sue employers in some cases. He also says that the bill’s definition of genetic tests isn’t identical in the sections dealing with employers and insurers. But its advocates dismiss these concerns as manufactured excuses. “The goalposts keep moving,” says Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University in Baltimore, Maryland. “He raises a concern and that concern gets addressed or negated and all of a sudden there is a new concern.” ¦
Meredith Wadman  www.nature.com/news

February 14, 2007 – The Genetic Information Nondiscrimination Act was approved by the House Committee on Education and Labor by a unanimous vote.  
GINA was voted on unanimously at the House Committee on Education and Labor’s mark up on February 14. Reps. Walberg and Hoekstra offered an amendment related to the unborn.   It was defeated by a vote of 27-20.  The vote fell along party lines with the exceptions of Democrats Reps. Altmire and Kildee, and Republicans Reps. Biggert and Castle. The Committee adopted an amendment offered by Rep. Kline to clarify record keeping requirements for employers. The bill will be reported out of Education and Labor shortly.  GINA will be considered by the House Committee on Energy and
commerce next.

January 31, 2007 – The Genetic Information Nondiscrimination Act is approved by the Senate Health, Education, Labor, and Pensions Committee by a vote of (19-2).

On January 30, 2007 - the Genetic Information Nondiscrimination Act was heard in the House Education and Labor Subcommittee on Health, Employment, Labor, and Pensions. Congresswoman Slaughter and Congresswoman Biggert testified before Chairman Andrews and the other Subcommittee members assembled. Dave Escher, a former Burlington Northern Santa Fe worker shared his genetic discrimination experience with those present. Karen Rothenberg, the Dean of the University of Maryland Law School, spoke to the history of and need for such legislation. Finally, Harriet Pearson, Vice President for Privacy at IBM, detailed her experience with initiating company policies on genetic nondiscrimination.

January 22, 2007 – The Genetic Information Nondiscrimination Act is introduced in the Senate.

January 16, 2007 – The Genetic Information Nondiscrimination Act is introduced in the House of Representatives.                                                                                    

Ercerts from a STATEMENT OF SENATOR EDWARD M. KENNEDY ON GENETIC INFORMATION NONDISCRIMINATION ACT, January 31, 2007 

In this century of the life sciences, much of what we learn through biomedical research is being translated into new treatments and cures, and nowhere is the explosion of scientific progress more apparent than in the field of genetics.  Four years after the remarkable achievement of discovering the sequence of the human genome, clinical testing is now possible for over a thousand genetic diseases.  It’s led to rapid growth in the field of personalized medicine, in which patients’ treatment and care is individualized according to their genetic make up.  In this century of the life sciences, much of what we learn through biomedical research is being translated into new treatments and cures, and nowhere is the explosion of scientific progress more apparent than in the field of genetics.  Four years after the remarkable achievement of discovering the sequence of the human genome, clinical testing is now possible for over a thousand genetic diseases.  It’s led to rapid growth in the field of personalized medicine, in growth in the field of personalized medicine, in which patients’ treatment and care is individualized according to their genetic make up. 

In the absence of federal protections, however, patients fear that undergoing genetic tests may lead to disqualification from future insurance coverage or that an employer will fire them or deny a promotion based on the results of a genetic test.  The consequence is that many Americans are choosing not to be tested, and are declining to participate in clinical trials so important for the development of new treatments.  Discrimination based on genetics is just as wrong as discrimination based on race or gender.  Our bill provides specific protections for citizens against genetic discrimination.  It prohibits health insurers from picking and choosing their customers based on genetics. Employers cannot fire or refuse to hire persons because of their genetic characteristics. It enables Americans to benefit from better health care through the use of genetic information, without the fear that it will be misused against them.        
 
It is difficult to imagine information more personal or more private than a person’s genetic makeup.  It should not be shared by insurers or employers, or be used in making decisions about health coverage or a job.  It should only be used by patients and their doctors to make the best diagnostic and treatment decisions they can.    If Congress enacts clear protections against genetic discrimination in employment and health insurance, all Americans will be able to enjoy the benefits of genetic research, free from the fear that their personal genetic information will be misused.  If Congress fails to make sure that genetic information is used only for legitimate purposes, we may well squander the vast potential of genetic research to improve the nation’s health.

The bill that we are considering today has been unanimously approved by the full Senate in the past two Congresses.  We passed it 95-0 in the 108th Congress, and 98-0 in the 109th Congress. It had over 240 co-sponsors in the House in both Congresses, but the leadership refused to bring it to a vote. As President Bush himself has said, “Genetic information should be an opportunity to prevent and treat disease, not an excuse for discrimination. Just as our nation addressed discrimination based on race, we must now prevent discrimination based on genetic information.'' We’re closer than ever to enactment. I urge the Committee to approve the bill, and this time, I think we’ll finally see it become law. 

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