[Congressional Record (Bound Edition), Volume 145 (1999), Part 1]
[Extensions of Remarks]
[Pages 342-343]
[From the U.S. Government Publishing Office, www.gpo.gov]



 GENETIC INFORMATION NONDISCRIMINATION IN HEALTH INSURANCE ACT OF 1999

                                 ______
                                 

                     HON. LOUISE McINTOSH SLAUGHTER

                              of new york

                    in the house of representatives

                       Wednesday, January 6, 1999

  Ms. SLAUGHTER. Mr. Speaker, I am proud to introduce today H.R. 306, 
the Genetic Information Nondiscrimination in Health Insurance Act of 
1999.
  Over the past few years, genetic discoveries have proceeded at a pace 
undreamt of less than a decade ago. Genes have been identified that are 
linked to common disorders like colon cancer, heart disease, and breast 
cancer. Doctors and researchers are moving rapidly to develop gene 
therapies and specialized drugs that attack only cells carrying damaged 
DNA.
  A tiny sample of blood, tissue, or hair can now reveal the most 
intimate secrets of an individual's present and future health. While 
this information holds tremendous promise for curing disease and 
alleviating human suffering, it also carries an equal potential for 
abuse.
  As a result, I am reintroducing the Genetic Information 
Nondiscrimination in Health Insurance Act. This vital legislation would 
prevent health insurers from denying, canceling, refusing to renew, or 
changing the terms, premiums, or conditions of coverage on the basis of 
genetic information. It would prohibit insurance companies from 
requesting or requiring that a person reveal genetic information. 
Finally, it would protect the privacy of genetic information by 
requiring that an insurer obtain prior, written consent from an 
individual before revealing his or her genetic information to a third 
party.
  Since it was first introduced in 1995, support for my legislation has 
grown steadily. At the end of the 105th Congress, the Genetic 
Information Nondiscrimination in Health Insurance Act had 210 
bipartisan cosponsors in the House and 25 in the Senate. It had also 
gained the endorsement of over 125 health-related organizations, 
ranging from advocacy groups like the National Breast Cancer Coalition 
and the March of Dimes to health professional organizations like the 
American Medical Association and the American Nurses Association. 
Religious organizations, health information managers, and consumer 
protection groups joined the fight.
  In May 1998, the Senate Labor and Human Resources Committee under 
Chairman Jim Jeffords held a groundbreaking hearing on genetic 
discrimination in health insurance. Unfortunately, efforts to move this 
legislation to the Senate floor became bogged down in the debate over 
managed care reform. Nevertheless, genetic nondiscrimination language 
was included in some versions of managed care reform legislation--an 
important step toward recognizing the urgent need to ban genetic 
discrimination in health insurance.
  Mr. Speaker, I am very hopeful that 1999 will be the year when 
Congress finally fulfills its duty to ensure that our nation's social 
policy keeps pace with scientific advances. Today, too many Americans 
are denying themselves access to information vital to their

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health--their genetic information--simply because they are afraid their 
insurers will learn this information and use it against them.
  We must put an end to this unconscionable Hobson's choice. Congress 
should ban genetic discrimination in health insurance. I look forward 
to working with Members from both parties to protect all of our 
constituents against this practice. The American people deserve no 
less.

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