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Public Statements

Statemenrts on Introduced Bills and Joint Resolutions

Location: Washington, DC



S. 305. A bill to authorize the Secretary of the Interior to recruit volunteers to assist with or facilitate the activities of various agencies and offices of the Department of the Interior; to the Committee on Energy and Natural Resources.

Mr. CRAIG. Mr. President, I rise today to introduce the Department of Interior Volunteer Recruitment Act of 2005. This bill would allow the Department of the Interior to recruit and use volunteers in the Bureau of Indian Affairs and the Offices of the Secretary. It also addresses some problems with existing volunteer authorities at the Bureau of Reclamation and the U.S. Geological Survey.

The Department of the Interior is a leader in the Federal Government in providing opportunities for volunteer service, and this bill significantly enhances our ability to provide volunteer opportunities to interested Americans. The bill provides for appropriate ethics and tort claims coverage for DOI volunteers and ensures against the displacement of employees by volunteers. Last, the bill contains provisions which explicitly protect private property rights.

By making it easier for people to volunteer in more Department of the Interior bureaus, this legislation contributes a crucial piece to the President's call to all Americans to volunteer in their communities and to the Secretary's Take Pride in America program, which is working in concert with that call. There is wide support for the bill and there is no known opposition.

I look forward to working with my colleagues to move this excellent bill through the legislative process quickly.

By Ms. SNOWE (for herself, Mr. Frist, Mr. Gregg, Mr. Kennedy, Mr. Enzi, Mr. Jeffords, Mr. Dodd, Mr. Harkin, Ms. Collins, Mr. Talent, Mr. Bingaman, Mr. Hatch, Ms. Mikulski, Mrs. Murray, and Mrs. Clinton):

S. 306. A bill to prohibit discrimination on the basis of genetic information with respect to health insurance and employment; to the Committee on Health, Education, Labor, and Pensions.

Ms. SNOW. Mr. President, I rise today to introduce the Genetic Information Nondiscrimination Act of 2005 and I am joined in doing so by a number of my colleagues including, Majority Leader Frist, Senator Jeffords, Senator Gregg as well as the chairman and ranking member of the Senate HELP Committee, Senators Enzi and Kennedy. The bill we are introducing today is the result of a collaborative effort spanning more than 8 years and I know I speak for my colleagues when I say that it is my hope that this bill will again receive the unanimous support of the Senate this year and that this will allow the House of Representatives to act swiftly in considering this bill this session.

This day has been a long time coming and, over the years, we have not only retraced our steps in some respects but-most importantly-forged ahead on new ground.

Since April of 1996, when I introduced for the first time the Genetic Information Nondiscrimination in Health Insurance Act, science has continued to hurtle forward, further opening the door to early detection and medical intervention through the discovery and identification of specific genes linked to diseases like breast cancer, Huntington's Disease, glaucoma, colon cancer, and cystic fibrosis. That 1996 bill recognized that with progress in the field of genetics accelerating at a breathtaking pace, we needed to ensure that with the scientific advances to come, we would advance the treatment and prevention of disease-without advancing a new basis for discrimination.

The following year, with the commitment of Senators FRIST and Jeffords to addressing this issue, I introduced a bill to ensure we would effectively address the need for protections against genetic discrimination in the health insurance industry. In turn, that bill was the basis for an amendment offered by Senator Jeffords, to the fiscal year 2001 Departments of Labor, Health and Human Services Appropriations bill which passed the Senate by a vote of 58-40.

While that victory was a notable step forward, unfortunately, it was not followed by the enactment of our bill. It did, however, respark the debate-which helped lay the foundation for our subsequent efforts.

Indeed, in March 2002, I was again joined by Senators Frist and Jeffords in introducing an updated version of our bill with the new support of Senators Gregg and Enzi. That bill not only addressed what had become the real threat of employment discrimination but also captured the changing world of science as this was the first bill to include what we had learned with the completion of the Genome Project.

I think back to when Representative Louise Slaughter and I had first introduced our bills in the 103rd Congress, and the completion of the Genome still seemed years away. Yet it was only four years later when everything changed with the unveiling of the first working draft of our entire genetic code. As we had known-and as with so many other scientific breakthroughs in history-the completion of the Genome not only brought about the prospect of medical advances, such as improved detection and earlier intervention, but also the potential for harm and abuse. Every day since-absent enactment of a law such as the bill we are introducing-has been a day the American people have been left unprotected from this type of discrimination. Every day since we have left the full potential of the Genome untapped.

The very real fear of repercussions from one's genetic makeup was brought home to me through the real life experience of one of my constituents, Bonnie Lee Tucker. In 1997, Bonnie Lee wrote me about her fear of having the BRCA test for breast cancer, even though she has nine women in her immediate family who were diagnosed with breast cancer, and she herself is a survivor. She wrote to me about her fear of having the BRCA test, because she worried it will ruin her daughter's ability to obtain insurance in the future. And Bonnie Lee isn't the only one who has this fear. When the National Institutes of Health offered women genetic testing, nearly 32 percent of those who were offered a test for breast cancer risk declined to take it citing concerns about health insurance discrimination. What good is scientific progress if it cannot be applied to those who would most benefit?

I recall the testimony before Congress of Dr. Francis Collins, the Director of the National Human Genome Research Institute, without whom we wouldn't have reached this day. In speaking of the next step for those involved in the Genome project, he explained that the project's scientists were engaged in a major endeavor to "uncover the connections between particular genes and particular diseases," to apply the knowledge they just unlocked. In order to do this, Dr. Collins said, "we need a vigorous research enterprise with the involvement of large numbers of individuals, so that we can draw more precise connections between a particular spelling of a gene and a particular outcome." Well, this effort cannot be successful if people are afraid of possible repercussions of their participation in genetic testing.

The bottom line is that, given the advances in science, there are two separate issues at hand. The first is to restrict discrimination by health insurers. The second is to prevent employment discrimination based simply upon an individual's genetic information.

The bill we are introducing again today addresses both these issues based on the firm foundation of current law. With regard to health insurance, the issues are clear and familiar, and something the Senate has debated before, in the context of the consideration of larger privacy issues. Indeed, as Congress considered what is now the Health Insurance Portability and Accountability Act of 1996, we also addressed the issues of privacy of medical information.

Moreover, any legislation that seeks to fully address these issues must consider the interaction of the new protections with the privacy rule which was mandated by HIPAA-and our legislation does just that. Specifically, we clarify the protections of genetic information as well as information about the request or receipt of genetic tests, from being used by the insurer against the patient.

Because the fact of the matter is, genetic information only detects the potential for a genetically linked disease or disorder-and potential does not equal a diagnosis of disease. At the same time, it is critical that this information be available to doctors and other health care professionals when necessary to diagnose, or treat, an illness. This is a distinction that begs our acknowledgment, as we discuss ways to protect patients from potential discriminatory practices by insurers.

On the subject of employment discrimination, unlike our legislative history on debating health privacy matters, the issues surrounding protecting genetic information from workplace discrimination is not as extensive. To that end, our bipartisan bill creates these protections in the workplace-and there should be no question of this need.

As demonstrated by the Burlington Northern case, the threat of employment discrimination is very real, and therefore it is essential that we take this information off the table, so to speak, before the use of this information becomes widespread. While Congress has not yet debated this specific type of employment discrimination, we have a great deal of employment case law and legislative history on which to build.

Indeed, as we considered the need for this type of protection, we agreed that we must extend current law discrimination protections to genetic information. We reviewed current employment discrimination law and considered what sort of remedies people would have for instances of genetic discrimination and if these remedies would be different from those available to people under current law-for instance under the ADA or the EEOC. The bill we introduce today creates new protections by paralleling current law and clarifies the remedies available to victims of discrimination. Ensuring that regardless of whether a person is discriminated against because of their religion, their race or their DNA, these people will all receive the same strong protections under the law.

It has been more than 3 years since the completion of the working draft of the Human Genome. Like a book which is never opened, the wonders of the Human Genome are useless unless people are willing to take advantage of it. This bill is the product of more than 16 months of bipartisan negotiations and is a shining example of what we can accomplish if we set aside partisan differences in order to address the challenges facing the American people. Certainly this bill was only possible due to the commitment of each of the Members here today to work together to come to a successful end and for that I am grateful.

I urge my colleagues to support this bill as they have in the past and that its broad support will be seen as a clarion call by the House of Representatives that it is time for us to do our part so that the President can sign this bill into law and finally ensure the American public is protected from this newest form of discrimination.

Mr. KENNEDY. Mr. President, it is a privilege to join Senator SNOWE, Senator PRIST, Senator GREGG, and Senator ENZI in introducing the Genetic Information Non-Discrimination Act. Today we take another step in our national journey to a fairer and more just America.

I particularly commend our colleague from Maine, Senator SNOWE, for her dedication to this vital issue. Senator SNOWE first proposed legislation on genetic discrimination in 1996. Hopefully, the bipartisan momentum we have built up in recent years will produce a consensus bill we can enact into law this year.

Two years ago, we celebrated an accomplishment that once seemed unimaginable-deciphering the entire sequence of the human DNA code. This amazing accomplishment will affect the 21st century as profoundly as the invention of the computer or the splitting of the atom affected the 20th century. But the extraordinary promise of science to improve health and relieve suffering is in jeopardy if our laws fail to provide adequate protections against misuse of genetic information.

Our bipartisan legislation 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.

Few kinds of information are more personal or more information than a person's genetic makeup. This information should not be shared by insurers or employers or be used in decisions about health coverage or a job. It should only be used by patients and their doctors to help them make the best possible decisions on diagnosis and treatment.

Breakthroughs in genetic science are 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 against them. Congress has a responsibility to guarantee that genetic information remains private and is not used for improper purposes.

Experts in genetics are united in calling for strong protections to prevent this misuse and abuse of science. The HHS advisory panel on genetic testing-with experts in law, science, medicine, and business-recommended unambiguously that Federal legislation is needed to prohibit discrimination in employment or health insurance based on genetic information. Last fall, witnesses testified about their first hand accounts of genetic discrimination. Heidi Williams' children were denied health insurance because they were carriers for a genetic disorder. Phil Hardt's children feared discrimination so much that they sought genetic tests in secret, paying out of their own pockets and not using their real names.

Francis Collins, the leader of the NIH project to sequence the human genome, 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."

Genetic tests are becoming 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.

When Congress enacts clear protections against genetic discrimination in employment 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 used against them. If Congress fails to see that genetic information is used only for legitimate purposes, we will squander the vast potential of genetic research to improve the Nation's health.

Effective enforcement will be essential. It makes no sense to enact legislation giving the American people the promise of protection against this form of discrimination and then deny them the reality of that protection.

President Bush recognizes the seriousness of this problem, and supports a ban on genetic discrimination. In his words, "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." I commend the President for his support, and I look forward to working with the administration to see that a strong bill on genetic discrimination is signed into law this year.

It is time for Congress to act, and I urge the Senate to do so without delay.

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