US Senate Releases Genetic Non-Discrimination Bill
"Today our committee considers important legislation to prevent discrimination on the basis of genetic information. The bipartisan agreement reflects many months of work between the members of our committee and many other colleagues in the Senate, and I commend them for their work on this issue, especially Senator Harkin, Senator Dodd, Senator Jeffords, Senator Gregg, Senator Frist, and Senator Enzi.
The legislation we consider today is a significant advance for patients, for medicine and for workers. The possibility of genetic information being misused has kept us from obtaining the full benefit of new genetic discoveries. The protections we enact today will give them the assurance they need and deserve that their genetic information will not be misused – now or in the future.
The bill prohibits health insurers from using genetic information to deny health coverage or raise premiums. It bars employers from using genetic information to make employment decisions. It prohibits insurers and employers from asking for genetic information, or requesting or requiring individuals to take genetic tests. It bars disclosure of genetic information by an insurer or employer, and provides strong remedies so that people who have suffered genetic discrimination can obtain relief in court.
It is difficult to imagine more personal or more private information than a person's genetic makeup. It should not be shared by insurers or employers, or used in making decisions about health coverage or a job. It should only be used by patients and their doctors to make the best health decisions they can.
We have all worked together to produce a strong, bipartisan bill, and it should be our joint commitment today to ensure that this bill sails through the Senate and the House, so that it can be presented to the President for his signature this year.
Last month, we commemorated the fiftieth anniversary of the discovery of the structure of DNA. The half century following that breakthrough has led to amazing progress in genetic science, including the completion of what once seemed unimaginable – deciphering the entire DNA sequence of the human genetic code. This accomplishment may well affect the 21st century as profoundly as the invention of the computer or the splitting of the atom affected the 20th century. It enabled scientists to decipher the DNA sequence of the SARS virus in mere weeks after it was first identified.
Scientific progress is bringing remarkable new opportunities for improving health care. But it also carries the danger that genetic information will be used as a basis for discrimination. I hope we can all agree that discrimination on the basis of a person's genetic traits is as unacceptable as discrimination on the basis of race or religion. No American should be denied health insurance or fired from a job because of a genetic test.
The vast potential of genetic knowledge to improve health care may go unfulfilled, if patients fear that information about their genetic characteristics will be used as the basis for discrimination. Congress has a responsibility to guarantee that genetic information remains private, and cannot be used for improper purposes.
Genetic discrimination in employment is already a growing problem. Last year, a witness told our committee that his employer, the Burlington Northern Santa Fe Railroad, required any employee with carpal tunnel syndrome to have a genetic test. Employees who refused were threatened with penalties, or even the loss of their jobs. Experts in genetics are united in calling for strong protections to prevent this kind of misuse and abuse of science. The HHS advisory panel on genetic testing and its experts in law, science, medicine and business recommended unambiguously that federal legislation should be enacted to prohibit discrimination in employment or in health insurance based on genetic information.
As Francis Collins, the leader of the NIH project on the sequence of the human genome, has said, "Genetic information and genetic technology can be used in ways that are fundamentally unjust.... Already, people have lost their jobs, lost their health insurance, and lost their economic well being because of the misuse of genetic information."
In the near future, genetic tests will become even cheaper and more widely available. If we don't ban discrimination now, it may soon be routine for employers to use genetic tests to deny jobs to employees, based on their risk for disease.
If Congress enacts clear protections against genetic discrimination in employment and health insurance, all Americans will be able to benefit from genetic research, free from the fear that their personal genetic information will be misused. If we fail to take this opportunity to make sure that genetic information is used only for legitimate purposes, we may well squander the vast potential of that research.
It is not enough simply to pass a bill that claims to provide protections against discrimination. We must make certain that it has effective and enforceable protections against abuse. It makes no sense to enact legislation giving the American people the promise of protection against this new form of discrimination, but denying them the reality of that protection.
President Bush recognizes the seriousness of this problem, and supports the enactment of legislation to ban genetic discrimination. In a speech last year, he 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." It's time for the Senate to act. I look forward to moving forward quickly on this needed legislation.
THE GENETIC INFORMATION NONDISCRIMINATION ACT
Scientists have recently completed the historic task of deciphering the entire DNA sequence of the human genetic code. This new knowledge is already allowing doctors to develop better ways to diagnose, prevent or treat some of the most feared diseases known to humanity. For genetic research to fulfill its vast promise to improve the health of all Americans, patients must be able to receive its benefits free from the fear that genetic information will be used as a basis for discrimination in health insurance or employment.
The bipartisan Genetic Information Nondiscrimination Act addresses these legitimate fears. This legislation will establish strong protections against discrimination based on genetic information both in health insurance and employment. Support for the bill has come from a wide range of organizations representing patients, medical professionals, families and employees. We should give all Americans the comprehensive protections against genetic discrimination in health insurance and employment they deserve by enacting this important legislation.
With regard to health insurance discrimination, the Act will:
PROHIBIT enrollment restriction and premium adjustment on the basis of predictive genetic information or genetic services;
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 when this information is most likely to be used in making enrollment decisions; and
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; and
COVER employers, employment agencies, labor organizations, and training programs."
Senator Edward M. Kennedy (D-MA) 5.21.03