[Congressional Record Volume 148, Number 23 (Wednesday, March 6, 2002)]
[Senate]
[Pages S1594-S1595]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




           GENETIC INFORMATION NONDISCRIMINATION ACT OF 2002

  Mr. ENZI. 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

[[Page S1595]]

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.

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