107th Congress

Genetic Non-Discrimination -- Hearing Before the Senate Committee on Health, Education, Labor and Pension -- July 25, 2001

Members Present:

Senator Edward Kennedy (D-MA), Chairman; Senator Christopher Dodd (D-CT); Senator Mike Enzi (R-WY); Senator Tim Hutchinson (R-AR); and Senator Hillary Rodham Clinton (D-NY).

Witnesses:

Panel I: Senator Thomas Daschle (D-SD), Senate Majority Leader.

Panel II: Dr. Francis Collins, Director, National Human Genome Research; Kathleen Zeitz, National Lead CoORDinator, National Breast Cancer Coalition; and David Escher, employee, Burlington Northern Sante Fe Railroad.

Summary:

Purpose of Hearing: The purpose of the hearing was to discuss the recent scientific advances in genetics that will lead to improved health and the development of therapies to treat and prevent devastating diseases. In addition, the committee looked at whether legislation is necessary to ensure that genetic information is not used to discriminate in hiring and to access insurance.

Opening Statements: Senator Kennedy opened the hearing by stating that this was an important issue and that there will be a second hearing in September. He, then, discussed how last year the impossible was achieved when the mapping of the human genome was completed. Senator Kennedy held up a tiny DNA chip containing the sequence of 60,000 human genes which can detect traits in ways that will assist patients in receiving treatment or in taking steps that will prevent the onset of disease. "DNA chips like these will affect the 21st Century as profoundly as the computer chip affected the 20th century." He then warned, "but this same chip in the hands of an employer or health insurance provider could be used to deny a patient needed health care, or deny an employee a job or promotion. The challenge is to see that this technology is used to improve health of Americans not to discriminate against them." Senator Enzi made a brief statement saying that he too, supported enacting Federal legislation which prohibits discrimination in both health insurance and employment on the basis of predictive genetic information. Senator Enzi stressed his belief that any legislation must be consistent with existing federal law relating to privacy and to employment nondiscrimination. "To do otherwise would upset the carefully designed balance of interest created by existing employment nondiscrimination statutes and to undermine the process for enforcing and redressing civil rights legislation." He then said the he could not support, S. 318, a bill introduced by Senate Majority Leader Daschle because he believes that it deviates significantly from other employment discrimination laws. Senator Hutchinson commented that though he understood the concerns about how this predictive genetic information can be used against an individual in a discriminatory fashion, there are a lot of issues that still must be examined. He hoped that the committee would have more hearings to look into how the proposed legislation would interact with the medical record privacy regulation, would duplicate protection under the Americans with Disabilities Act and how it would effect mandatory dispute procedures under the Equal Employment Opportunity Commission. Senator Dodd first stated that he was proud to be a cosponsor of the Daschle bill. He then went on to discuss the recent advances in science and how they offer new hope to patients. But that the good news has to be balanced with the potential for abuse. He likened this to the promise of embryonic stem cell research and how that has to be balanced with the "very complex ethical issues." He then stated that Federal legislation is critical, even though many states, like his state of Connecticut have strong state antidiscrimination laws. He pointed out that 41 percent of his constituents are not covered under the state law because of the ERISA exemption. He predicted that Congress will enact such legislation this year. Lastly, Senator Clinton, who also is a cosponsor of the Daschle bill, stated that the Daschle bill is a first step which must be taken as soon as possible. She said that she believes that inevitably we will all be determined to have some genetic vulnerability or susceptibility to something. "If we are to harvest the benefits in terms of extension of life and the awareness of conditions that can be ameliorated or prevented, then we have to take a strong stand against any and all discrimination in the use of this information."

Statements of Witnesses and Questions:

Panel I: Senator Daschle started his testimony by reminding the committee that he testified a year ago. At that time he testified that he feared that current laws were insufficient at protecting individuals against genetic discrimination. "The last twelve months have provided new and disturbing information to support that view," Daschle testified. He said that it is time for Congress to pass real genetic discrimination legislation and urged the committee to take action on his legislation, S. 318, which is the same bill introduced by Representatives Louise M. Slaughter (D-NY) and Constance Morella (R-MD). Senator Daschle then summarized S. 318, by describing its three components. First, it forbids health insurers from discriminating against individuals based on genetic information. Second, it forbids employers from discriminating in hiring, or in the terms and conditions of employment based on genetic information. Third, it prevents disclosure of genetic information to third parties, employers, and anyone else who has no legitimate need for the information. Senator Daschle then applauded the President for his announcement that he too favors national protection against genetic discrimination.

Panel II: Dr. Collins, testified about how the advances in genetic research will shape the medicine of the future. First, he discussed how the sequencing of the human genome is helping to identify genes associated with a disease. In the 1980's he was part of a team that located the gene for cystic fibrosis which took 9 years. Four years ago, it took scientists 9 days to discover the gene for Parkinson's disease. Most recently it took 9 seconds to discover the gene for chron's disease, simply by going to the information on the Internet. Next, Dr. Collins predicted medicine in the future. In 2010 he expects there to be a dozen predictive tests associated with intervention drugs. In 2020 he expects there to be gene based designer drugs for many diseases and in 2030 there will be genomics based health care. But he warned, that this can only come to pass if Americans feel safe about being tested. Recent polls suggest that currently most Americans do not feel safe. He is pleased that Congress is working on this in a bipartisan fashion. "It is time to provide the American public with the reassurance that they deserve. That the revolution in genetic medicine which is coming quickly upon us will be used for their benefit and not to do harm."

Kathy Zeitz, who is a breast cancer survivor and a genetics testing participant, testified that her daughter will not undergo genetic testing due to her fear of discrimination by health insurers and employers. She testified that enactment of S. 318 is necessary to protect individuals and their families so that they can participate in biomedical research and reap the benefits of its breakthroughs without fearing repercussion from health insurers and employers. Second, she argued, that federal legislation is necessary because there is no federal law that adequately protects everyone from discrimination. Third, she testified that it is important that any legislation contain a strict enforcement provision like that in S. 318.

David Escher testified about his personal experience of discrimination after being diagnosed with carpel tunnel syndrom. His employer, Burlington Northern Sante Fe Railroad, forced him to undergo a medical exam at which seven vials of his blood were taken to perform genetic screening without his consent or knowledge, in an attempt to prove that his injury was not work related but, instead, genetic. In addition, he testified that since going public with his story, people who have experienced discrimination from their employers have shared similar stories. Most of these people wish to remain anonymous for fear of repercussion.

Questions - Senator Kennedy first asked Dr. Collins if legislation along the lines of Senator Daschle's bill would harm medical research? Whether HIPAA or state laws provide adequate protections for individuals? Dr. Collins replied that while there is concern that if legislation is not properly wORDed it could create barriers to research. The Daschle bill, however, does not restrict the use of information research and would encourage research. Senator Kennedy asked Dr. Collins to provide a more detailed written response to the question. With regards to HIPAA and state laws, Dr. Collins replied that about a dozen states have passed laws resulting in a patchwork of protections. He responded that since some of those state laws are better than others, It would make more sense to have a uniform law that applies to everyone. With regards to whether the ADA applies in this circumstance, Dr. Collins responded that this question is the subject of much debate. Further, he stated, there has been no resolution of the issue in the courts.

Senator Kennedy than asked Kathy Zeitz to comment on whether she believes that other women with a disposition to the cancer gene are not willing to take the necessary tests to detect whether they have the cancer gene because of the fear that they may be excluded from insurance? Ms. Zeitz answered affirmatively and again used her daughter as an example. She then responded to the question regarding the effectiveness of HIPAA and the ADA to prevent discrimination. She said that she did not think that HIPAA is sufficient in and of itself. She also stated that she once thought and wrote a paper that the ADA was going to be effective in protecting against genetic information. Now, however, she believes that the courts have weakened the ADA and does not think that it will protect individuals from genetic discrimination.

Senator Dodd asked Dr. Collins to discuss how the Human Genome Project has addressed ethical issues. Dr. Collins stated that Jim Watson, the first Director of the Human Genome Project, established the Ethical, Legal and Social Implications (ELSI) Program which studies those issues. This program has become the largest effort in bioethics. "It has recruited into this endeavor a cohort of superb scholars and has produced a remarkable record of published scholarship and recommendations about the major issues that are raised by accelerated pace of our own genetic discovery."

Senator Clinton asked all the witnesses to sum up from their own perspective the best arguments for the Daschle bill and why it is an important first step for Congress to take. Dr. Collins responded that from all the analysis that he has seen going on over the last decade that there is a need for this kind of protection, that it needs to apply both to health insurance and employment settings, that it ought to be available to all Americans and not in an uneven fashion. "The way in which that has now been endorsed by the Congress in the introduction of these various bills that are under discussion and by the President in his recent remarks a month ago tells me that we are on the right track here to get this taken care of." He added, "and I must say that every month that goes by where action has not been taken, it is going to get harder to take action because it will be more and more becoming the standard by which health insurers and employers operate if there is no prevention of that outcome."

Kathy Zeitz stated that she is concerned that finding a cure for breast cancer, a cause which she is so deeply involved, depends on it since it appears to be genetically linked. Under the current environment research will be impeded by women fearful of participating in the genetic research. She is worried for her granddaughter.

David Escher held up a picture of his three daughters and stated that his family is the best reason for the need for this legislation.

Prepared by Lauren Higgins/OD/OLPA