Senator Chris Dodd (D-CT), a senior member of the Senate Committee on Health, Education, Labor, and Pensions, today lauded Senate passage of the Genetic Information Nondiscrimination Act of 2007 (GINA), a bill that will bar health insurance companies from using genetic information to set premiums or determine eligibility and prevent employers from using genetic information in hiring, firing or promotion decisions. Dodd, who has been a cosponsor of GINA since 1997, went to the Senate floor today to call for the bill’s passage.

“Without adequate protections against genetic discrimination, parents may forego testing, even in cases where the results have the potential to save their lives or the lives of their children,” said Dodd.  “That is why this legislation is so essential. It would provide significant protections against the misuse of genetic information by health plan providers and employers, ensuring that Americans will not lose or be denied health insurance, jobs, or promotions based on their genetic makeup.” 

The full text of Senator Dodd’s statement as prepared for delivery is below:

Mr. DODD. Mr. President, I rise today to express my strong support for the Genetic Information Nondiscrimination Act of 2007, better known as GINA, and to urge its speedy passage. When I first joined Senator Olympia Snowe in the fight for passage of this legislation in 1997, our nation was at the dawn of a burgeoning genetic age, a time when we could only dream of the technologies that exist today. Those genetic technologies are available now and are here to stay. Genetic testing and genomic services are being advertised directly to consumers even as we speak. So, the need for this legislation has never been greater. 

I would like to take a moment to commend the leadership of Senator Snowe who has been the champion for the protection of genetic information for more than a decade and Senators Kennedy and Enzi whose leadership and skillful negotiations have allowed for passage of this legislation. I also want to thank Majority Leader Reid for his support and commitment to the passage of this legislation. I would be remiss if I did not also mention the dedication to this issue shown by our former Democratic leader, Senator Tom Daschle, whose work enabled Senate passage of this legislation in previous congresses.

Many of us, on both sides of the aisle, saw the need years ago for legally enforceable rules to maximize the potential benefits of genetic information -- and minimize its potential dangers. But despite passage of this legislation in the Senate twice and the House once, it is still not the law of the land. Up until today, passage of this legislation was being blocked by one Senator. While I am heartened that efforts to obstruct passage of a bill so widely supported in the Senate and House have been overcome, I am disappointed that the valuable protections provided by this legislation were denied to the American people until now.

In the decade that has passed since this legislation has been pending, the sequencing of the human genome was completed, yielding a dizzying number of new discoveries about genes associated with disease and accelerating genetic research. Scientists are finding that nearly all diseases – including common diseases such as diabetes and heart disease – have a genetic component. Determining the underlying genetic components of disease is fueling the development of new treatments and cures. 

Additionally, genetic tests for hundreds of disorders are already available, with many more in the pipeline. Some of these tests predict the likelihood of developing a disease or condition, providing unique opportunities for interventions that may delay onset of or wholly prevent some diseases. In the not so distant future, routine use of genetic information will give doctors an unprecedented ability to tailor treatments to the individual patient. 

However, the potential benefits of such advances in medicine will not be realized if people refuse genetic testing or do not participate in genetics research because they fear discrimination by an employer or an insurance company.

Indeed, surveys have repeatedly shown that Americans do fear the possibility of genetic discrimination. They are afraid of losing their jobs or health insurance coverage because their employer or insurance company learns of a genetic risk for disease – a disease they do not currently have and may in fact never get. They are also afraid of affecting their children’s ability to get a job or obtain health insurance. 

Without adequate protections against discrimination, parents may forego genetic testing, even in cases where the results have the potential to save their lives or the lives of their children.

Our genetic code is the most personal of all information. We do not yet fully understand what it can reveal about us as individuals and about who we may or may not become.   All Americans have the right to use this information to make better health care decisions and not to fear its misuse.

The potential for misuse of genetic information is real. State laws provide only a mixed bag of safeguards, leaving inadequate or no protection against discrimination for many Americans. And, existing Federal protections against genetic discrimination under the Health Insurance Portability and Accountability Act (HIPAA) or the Americans with Disabilities Act (ADA) are inadequate to comprehensively protect against misuse of genetic information. 

That is why GINA is so essential. It would provide significant protections against the misuse of genetic information by health plan providers and employers, ensuring that Americans will not lose or be denied health insurance, jobs, or promotions based on their genetic makeup. 

Specifically, it prohibits enrollment restriction and premium adjustment on the basis of genetic information or genetic services. It prevents health plans and insurers from requesting or requiring that an individual take a genetic test. With respect to employment discrimination, the legislation prohibits discrimination in hiring, compensation, and other personnel processes and prohibits the collection of genetic information.   The legislation protects each and every one of us because we all potentially have a genetic makeup that makes us more susceptible to some kind of ailment.   

While this legislation represents an enormous step forward and is a vast improvement over current law, I remain concerned about the measure’s privacy protections and intend to continue monitoring them over time. Specifically, the legislation imposes important limitations on the collection of personal genetic information by insurance companies, but it would still allow them to collect such information, without consent, once an individual is enrolled in a health plan. While insurance companies are expressly prohibited from using this information for the purposes of underwriting, I remain concerned that once this information is collected, it may be difficult to control how it is used and who has access to it. As we’ve seen with numerous high-profile data breaches at the Veterans’ Administration and the National Institutes of Health, the greater the number of people with access to information, the greater the challenge of protecting that information. 

As this bill becomes law – and I genuinely hope it will – I will be following its implementation and the extent to which it ensures that privacy is protected. We will not hesitate to revisit this issue in the future if need be.

Mr. President, I am the author of the Newborn Screening Saves Lives Act, along with my colleague Senator Hatch, which the senate passed unanimously last December and is expected to be signed into law by the President in the coming days. This legislation would expand and improve the number and quality of screening tests for genetic and metabolic conditions offered to newborns throughout the U.S. These tests are critical because if a newborn tests positive for one of these rare conditions, treatment must begin immediately to prevent a lifetime of disability or even death. Because many of these conditions are genetic, the protections guaranteed under GINA are so critical to preventing discrimination against children and their families by insurers or employers.

It is my strong hope that GINA will be sent to the President for his signature very soon.   Mr. President, we do not tolerate discrimination based on race or gender in this country, and we cannot tolerate discrimination based on our DNA. I urge my colleagues to support this vital legislation.