[Congressional Record (Bound Edition), Volume 145 (1999), Part 11]
[Extensions of Remarks]
[Page 15395]
[From the U.S. Government Publishing Office, www.gpo.gov]




  THE GENETIC NONDISCRIMINATION IN HEALTH INSURANCE AND EMPLOYMENT ACT

                                 ______
                                 

                     HON. LOUISE McINTOSH SLAUGHTER

                              of new york

                    in the house of representatives

                         Thursday, July 1, 1999

  Ms. SLAUGHTER. Mr. Speaker, I am proud to rise today to announce the 
introduction of the Genetic Nondiscrimination in Health Insurance 
Employment Act, a bill that will protect all Americans against the 
misuse of their genetic information.
  Genetic information is among the most powerful, personal, and private 
information we can have about ourselves. Increasingly, genetics can 
give us insights into the fundamental characteristics that make us 
individuals--into what makes our eyes blue, our skin freckled, our 
bones more prone to breaking, our family members unusually long-lived. 
Yet while genetic information can offer insights, it rarely extends 
guarantees. Few genes carry an absolute assurance of developing a given 
condition or disease. Rather, the vast majority of genes increase or 
decrease our health risks, interacting with a complex web of 
environmental and other factors to produce an actual health outcome.
  Our understanding of genetics and the interplay between genes and 
outside influences is still in its infancy, but it is growing every 
day. The Human Genome Project, coordinated by the National Human Genome 
Research Institute, now predicts that we will have a ``working draft'' 
of the entire human genome by early in the year 2000. A complete, 
highly accurate transcript will be completed only perhaps two to three 
years later. In the meantime, science will continue racing ahead to 
identify genes associated with specific traits and diseases. Before 
long, new gene-based therapies will likely be available to treat 
genetic diseases, ushering in a new era in human medicine.
  The promise of genetic research and technology seems almost 
limitless. Unfortunately, the potential for abuse of genetic 
information is also considerable. Many health insurers and employers 
have already expressed a keen interest in the potential to use genetic 
information. In some cases, this genetic information would not be used 
to pursue the best interests of the individuals involved. Health 
insurers may wish to use genetic data to determine which consumers are 
likely to be the most or least healthy, setting insurance premiums 
accordingly or denying coverage altogether. Employers could use genetic 
information in hiring or promotion decisions, or as a tool to keep 
their company's insurance premiums low. In either situation, such 
actions would effectively punish individuals for being born with 
certain genes.
  Americans are deeply concerned about the possibility of genetic 
discrimination. In a recent poll of Better Homes & Gardens readers, 
fully 90 percent of respondents said they were extremely, very, or 
somewhat concerned when asked, ``How concerned are you that [genetic] 
tests will be used to deny health insurance or even jobs?'' Even more 
worrisome, evidence is emerging that many people are deciding not to 
participate in clinical trials or genetic research because they fear 
their genetic information might not remain private. Clearly, we must 
protect the privacy of genetic information and prevent abuse of this 
data if we are to avoid damaging the propsects of genetic research for 
curing human ills.
  The Genetic Nondiscrimination in Health Insurance and Employment Act 
would provide all Americans with the necessary guarantees that their 
genetic information will not be used against them. This bill would 
prevent insurers from raising insurance premiums or denying coverage 
based on predictive genetic information. It would also prohibit 
insurance companies from requiring disclosure of this sensitive 
information or revealing it to third parties without consent. These 
provisions are backed up with meaningful penalties and remedies.
  In addition, this bill contains crucial provisions banning genetic 
discrimination in employment. Under this legislation, employers would 
be barred from failing to hire, firing, or discriminating against 
workers with respect to the compensation, terms or privileges of 
employment based on genetic information. Employers would be prohibited 
from collecting genetic information except in connection with a program 
to monitor biological effects of toxic substances in the workplace. 
Finally, the privacy of genetic information would be protected by 
preventing employers from disclosing this information to outside 
parties.
  I am pleased to note that companion legislation is being introduced 
today by Senators Tom Daschle, Edward Kennedy, Tom Harkin, and 
Christopher Dodd. Our bill is supported by a broad range of 
organizations active on health care issues. I look forward to building 
a bipartisan coalition in support of this bill, which responds 
effectively to the concerns of the American people with regard to 
genetics.
  Mr. Speaker, I urge the House leadership to schedule hearings 
immediately on the Genetic Nondiscrimination in Health Insurance and 
Employment Act. With completion of the human genome mapping imminent, 
we cannot afford to waste any more time in addressing these critical 
issues. Congress must act quickly to protect all Americans against 
genetic discrimination and secure the future of genetic research.

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