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Genetic Information Nondiscrimination Act Of 2002

Sen. Michael B. Enzi

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Madam President, I rise today to join my colleagues in introducing the Genetic Information Nondiscrimination Act of 2002. I am particularly grateful to Senators Snowe, Jeffords, Frist and Gregg for their leadership on the extremely important policy matter of protecting individuals from genetic discrimination.

This bill would effectively and fairly protect against genetic discrimination in health insurance and employment. The group of members assembled to introduce this bill is bipartisan. We all worked together in the past on a bill that dealt strictly with genetic discrimination in health insurance, and today are introducing a bill that includes a new title to also protect individuals from genetic discrimination in employment. During the last Congress, our bill dealing with health insurance discrimination passed the Senate three times. I hope this new bill just has to pass once before the President can sign it into law.

As I have previously stated, I believe there is unanimous support for enacting legislation which prohibits discrimination in both health insurance and employment. The promise that genetic information holds for revolutionary advances in the diagnosis and treatment of diseases such as cancer, Parkinson's disease, heart disease and diabetes should not be hindered by fears about the discriminatory use of this information.

As a result of a lot of hard work and a hearing held by Chairman Kennedy on February 13, 2002, we are able to introduce a bill today that reflects the cutting edge knowledge about genetic science and also reflects the current regulatory state with respect to medical records privacy. Both the original Snowe bill and the alternative Daschle bill were drafted years ago. The Human Genome has since been mapped. Comprehensive medical records privacy regulations, which will cover genetic information, have since been promulgated. And, the Equal Employment Opportunity Commission, EEOC, has since stated the need to expressly protect individuals from employment discrimination based on genetic information.

In other words, this bill provides the most informed policy to meet the goal of protecting individuals from discrimination without denying the promise of genetic science. Here are just a few examples of how our bill has been improved.

First, the definition of genetic information correctly reflects the science of genetics as the best minds know it today, not 4 years ago. Secondly, the medical records privacy regulation called for under the Kennedy-Kassebaum Health Insurance Portability and Accountability Act of 1996, HIPAA, is nearly final. The Kennedy-Kassebaum law clearly intended that genetic information be considered medical information, and, therefore, should be equally protected under the same privacy standards. The Snowe bill we're introducing today codifies that intent.

The President has also called upon Congress to pass legislation prohibiting discrimination on the basis of genetic information that is fair, reasonable and consistent with existing discrimination statutes when it comes to protecting individuals against employment discrimination. Consistency is mandated to protect the rights of employees and employers alike. Consistency is mandated to protect the carefully designed process for enforcing and redressing employment civil rights legislation.

Therefore, I believe that federal legislation prohibiting employment discrimination based on genetic information must not deviate from other employment discrimination laws, namely Title VII of the Civil Rights Act of 1964 and the Americans with Disabilities Act, with regard to enforcement and remedies.

Furthermore, we cannot enact new employment discrimination legislation without examining its interaction with existing laws. We must be careful to avoid enacting legislation that places employers between a rock and a hard place. That is, in order to comply with one law, an employer violates another. For example, an employer should not be placed in the impossible position of violating genetic discrimination legislation by virtue of its requirement to comply with the ADA or Family and Medical Leave Act. Nor should employers be held to conflicting standards governing the disclosure of genetic information.

Let me briefly address the issue of enforcement of employment discrimination claims on the basis of genetic information. Under Title VII and the ADA, Congress gave the Equal Employment Opportunity Commission the role of investigating and enforcing complaints of violations of these laws. Under both of these laws, a claimant must first file a complaint with the EEOC before being able to file a private suit in court.

The EEOC plays a critical role in the compliance with and enforcement of employment nondiscrimination laws. The EEOC's mediation activities also serve to expedite resolution of employment cases and reduce the backlog of such cases in our courts.

Federal legislation on genetic nondiscrimination that would allow a claimant to bypass the vital role that the EEOC plays undermines the efficacy of such legislation. Furthermore, what is the justification for allowing an individual claiming genetic discrimination to circumvent the complaint process that claimants of other basis of employment discrimination must follow?

With regard to remedies for employment discrimination based on genetic information, federal legislation should not disregard the remedy structure of other employment discrimination laws. The Civil Rights Act of 1991, which applies to remedies available under Title VII and the ADA, places a cap on consequential and punitive damages that is progressive with the size of the employer.

I cannot see the justification for allowing unlimited damages for employment discrimination based on genetic information. Why should someone claiming genetic discrimination, but who is asymptomatic, be able to recover greater damages than someone who is actually disabled in the present or who is a claimant of race discrimination? We must guard against enacting legislation that, in an effort to protect individuals who have been subjected to one type of discrimination, creates inequities for individuals who have been subjected to another type. Unfortunately, I read the alternative bill sponsored by Sen. Daschle to create just such an inequity.

The issue of confidentiality of genetic information in the employment context in relation to existing privacy laws might seem very complex. However, I think that the issue is not as complex as we make it out to be. First and foremost, an employer should not be held to conflicting legal requirements regarding the confidentiality of such information.

The HIPAA medical records privacy regulation I mentioned before governs the disclosure of all medical information, including genetic information, by health plans, health care clearinghouses and certain health care providers. Therefore, an employer who is acting in its capacity as a group health plan will be subject to the HIPAA privacy regulation. Federal legislation that prohibits discrimination in health insurance and employment on the basis of genetic information should not create confidentiality requirements for employers acting as group health plans that conflict with the privacy regulation. Again, Sen. Daschle's bill would create this kind of conflict.

On a subject as important as the use and disclosure of genetic information, we must understand and build from existing federal laws and regulations. With this foundation and the benefit of today's understanding of genetic science, I look forward to passing legislation to prohibit discrimination in health insurance and employment of the basis of genetic information.