107th Congress

Report: Protecting Against Genetic Discrimination: The Limits of Existing Laws—Hearing Before the Senate Committee on Health, Education, Labor and Pensions—February 13, 2002

Members Present

Senator Hillary Rodham Clinton (D-NY), Hearing Chairperson; Senator Judd Gregg (R-NH), Ranking Member; Senator Mike Enzi (R-WY ); and Senator James Jeffords (I-VT).

Witnesses

Panel One: Bobby Jindal, Assistant Secretary for Planning and Evaluation, Department of Health and Human Services; and Cari Dominguez, Chair, Equal Opportunity Commission.

Panel Two: Debra Ness, Executive Vice-President, National Partnership for Women and Families; Joanne Hustead, Senior Counsel, Health Privacy Project, Institute for Health Care Research and Policy, Georgetown University; Andrew Imparato, President and CEO, American Association of People with Disabilities; Ronald Adler, President, Laureden Associates, Inc. (Human Resources Consultant).

Summary

Purpose of Hearing: This hearing was a follow-up to a hearing held by this committee last July. The purpose of this hearing was to help committee members determine the limits and gaps of existing laws that need to be filled by proposed legislation. In addition, testimony was presented that raised issues concerning the potential interaction of existing law with proposed legislation.

Opening Statements: Senator Clinton, as acting Chairperson, opened the hearing by stating that at the July hearing it was well established that the American public has a strong desire for protections against genetic discrimination. Senator Clinton is a cosponsor of a bill introduced by Senator Thomas Daschle (D-SD) that prohibits both discrimination in health insurance and employment based on genetic information. "Advancements in science should help advance civilized society, not reverse our progress. And the discrimination based on genetic information would be a step backward for civilization and progress, and human dignity."

Senator Gregg, while agreeing that legislation is needed, stressed that we need to move ahead with caution. He stated that proposed legislation must: avoid conflicting and overlapping rules; ensure that rights of recovery are not inequitable; and avoid overreaching into areas now reserved for state control, such as community rating. In closing he stated that science will continue to change and any new laws enacted by Congress must be flexible to change as science expands.

Senator Enzi, who is a cosponsor of Senator Olympia Snowe's (R-ME) bill, stated that he supports legislation which prohibits discrimination, both discrimination in health insurance and employment. However, he continued, new legislation should not conflict with current civil rights law.

Statements of Witnesses and Questions

Panel One: Cari Dominguez began her testimony by reiterating President Bush's concern that "employers may be tempted to deny a job based on a person's genetic profile. . .genetic discrimination is unfair to workers and their families." And that generic discrimination should be prohibited through legislation that is "fair, reasonable, and consistent with existing discrimination statutes." She then emphasized that a genetic nondiscrimination bill should be consistent with existing nondiscrimination statutes. She spoke about how "the EEOC has an established and familiar administrative procedure, including a well received mediation program, which has proven successful in resolving discrimination charges swiftly, to the satisfaction of all parties and without mediation." In addition, she discussed how "where the EEOC finds cause to believe that discrimination has occurred, we have a conciliation procedure through which many charges are resolved. Morever, during the past several years, the Commission has made several changes to charge processing, enabling us to keep up with our current case loads and reduce our charge backlog." Thus she concluded that legislation providing protections from genetic discrimination "should take advantage of the expertise and process of the EEOC." Finally, she also stated that any legislation "should avoid creating inequities in the law by ensuring that remedies for genetic discrimination are consistent with remedies in existing nondiscrimination statutes. It would be manifestly unfair to provide lesser or greater relief to an otherwise healthy individual based on a genetic marker that may or may not develop into a disease or disorder than an individual who actually has the disease or disorder." Senator Clinton sought to confirm that the Administration would prefer that any new legislation give the EEOC a role in employment discrimination. Ms. Dominguez responded that, "yes, that was accurate." She stated that, "The Administration recommends that the administrative process be exhausted before allowing an individual to go to the courts which would be consistent with the mechanism under the Americans with Disabilities Act (ADA)." Senator Clinton asked about the concern raised by many about the EEOC's ability to handle more cases. Ms. Dominguez responded that the EEOC's capacity today is the lowest inventory of charges in 20 years.

Assistant Secretary Bobby Jindal also started his testimony by reiterating the President's support for legislation prohibiting discrimination in health insurance and employment based on genetic information. After reviewing the very recent advancements in genetic medicine, he expressed concern that, "as we stand at the brink of genetic medicine, patients are fearful of taking advantage of these new genetic tests that could save lives." He briefly discussed that there are existing state laws which prohibit the use of genetic information to discriminate in health insurance and how the Health Insurance Portability and Accountability Act (HIPAA) has limited protections for those insured under group health plans. However, he continued "further measures are needed to address the following discrimination issues that were left unresolved by HIPAA." First, he testified, "the Administration believes that insurers in the individual market, as well as the group market, should not be permitted to deny enrollment based solely on a healthy individual's predisposition to a future disease. Second, the Administration believes that insurers in the individual and group markets should be prohibited from adjusting health insurance premiums based solely on the genetic predisposition for future illness or disease of an individual or group of individuals." He continued, "the Administration believes that these changes will greatly reduce the potential for genetic discrimination in health insurance." With regard to privacy, he testified that, "the Administration believes that the Privacy Rules, promulgated under HIPAA, affORDs the appropriate level of protection for all individually identifiable health information, including genetic information. If providers have different rules for different types of information, the potential for confusion or unintended misuses might actually increase." When asked by Senator Clinton whether the Administration would be putting forth its own proposal, the Assistant Secretary clarified that the Administration does not have any plans to submit its own proposal but would be happy to work with the Committee on such legislation. Senator Clinton than asked about the Administration's proposal to support tax credits to help individuals purchase health insurance. She was concerned that under existing laws these individuals would not be covered by HIPAA and, thus, subject to discrimination by health plans. The Assistant Secretary responded that the Administration's proposal will allow states flexibility to pursue innovative ways to help individuals purchase health insurance, including the use of purchasing pools. Senator Gregg asked the Assistant Secretary if the Administration had a proposal for the definition of genetic information that would be covered under legislation. Again, the Assistant Secretary articulated the Administration's willingness to work with the subcommittee on that and other issues.

Panel Two: Debra Ness, Joan Hustead and Andrew Imparato all spoke about the shortcomings in current law and the need for legislation to help fill the gaps. Joan Hustead stated that she believes that only the Daschle bill provides the necessary protections to ensure that employers do not either obtain or use genetic information to discriminate, since it is the only bill to regulate employer acquisition, use and storage of information. Debra Ness agreed that the Daschle bill was the better bill. She stated that the issue of penalties was critical. She said that they were opposed to having caps on awards, similar to those under the ADA since caps diminish the ability to deter bad behavior. Andrew Imparato's testimony focused on the limits of the ADA to protect against genetic discrimination in the workplace and agreed with the others that the Daschle bill presented the best approach to protecting against employers use of genetic information to discriminate in the workplace.

Ron Adler testified to provide what he characterized as the perspective of the employers. First he wanted to clarify that employers support legislation which prohibits the use of genetic information to discriminate in the employment setting; but, employers are more concerned with the details of such legislation. Secondly, he wanted to clarify that employers are not currently conducting genetic testing to make hiring decisions. He stated that the case involving Burlington Northern is an example of one bad apple; the majority of employers are not like that. He then focused on his concerns for proposed legislation. He said that legislation should focus on penalizing employers who abuse information and not for merely having the information. Secondly, he stated that new legislation needs to be consistent with other Federal discrimination laws like the ADA. Third, he said that Congress needs to be careful that new laws would not conflict with existing laws that require employers to collect certain information. And lastly, he raised the concern that 28 states have their own laws, so there is a need to address how a Federal law would interact with state laws.

Senator Clinton asked Ms. Hustead about the potential conflicts that legislation might have with current requirements on employers to collect information. Ms. Hustead responded that "we must examine closely if there are any real conflicts." She explained that most laws do not actually require the collection of such information but rather permit the collection of the information. If a new law prohibited the collection of that information, then that would mean that an employer cannot collect it. She further stated that under the Daschle bill the key is whether the employer uses the information no matter how the information is obtained. Ms. Ness agreed, adding that under the Daschle bill, no employer would be penalized for innocently receiving information.

Prepared by Lauren Higgins/OD/OLPA, February 22, 2002