[Congressional Record Volume 147, Number 20 (Tuesday, February 13, 2001)]
[Extensions of Remarks]
[Page E164]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




    GENETIC NONDISCRIMINATION IN HEALTH INSURANCE AND EMPLOYMENT ACT

                                 ______
                                 

                     HON. LOUISE McINTOSH SLAUGHTER

                              of new york

                    in the house of representatives

                       Tuesday, February 13, 2001

  Ms. SLAUGHTER. Mr. Speaker, I am proud to rise to announce the 
reintroduction of the Genetic Nondiscrimination in Health Insurance and 
Employment Act.
  Yesterday, scientific and scholarly articles were published that 
explored the implications of the mapping of the human genome. Their 
conclusions were nothing short of awe-inspiring. The human genome map 
is going to allow us to explore and better understand not only human 
health and disease, but the very development of our species. It has 
tremendous promise to allow us to conquer some of the most feared 
diseases known to humanity and perhaps to manipulate our very destiny. 
It is a story of our present, past, and future.
  The Romans had a famous saying: Scientia est potentia. Knowledge is 
power. From scientia we derive the English word science. Like any kind 
of power, however, the scientific knowledge we are gaining about our 
genetic composition can be used for both positive and negative ends. If 
used wisely, it could be a tool for health and healing that shapes the 
very future of our race. If used foolishly, however, it could become a 
weapon to undermine individuals' futures, create further divisions 
among groups of people, and tear at the very fabric of our nation.
  Over five years ago, I introduced the first legislation in Congress 
to ban genetic discrimination in health insurance. Since that time, 
science has rocketed ahead at a speed no one predicted, even within the 
genetics community. Social policy, however, has not kept pace. Congress 
addressed the use of genetic information in passing through the Health 
Insurance Portability and Accountability Act of 1996, but this law 
covered only some cases of health insurance discrimination. A 
comprehensive law is needed to protect Americans against the misuse of 
their genetic information.
  For that reason, I am introducing the Genetic Nondiscrimination in 
Health Insurance and Employment Act of 2001. l am pleased to be joined 
by my distinguished colleague, Representative Constance Morella, who 
represents the National Institutes of Health and has a long record of 
achievement and advocacy in the health care arena, and 150 bipartisan 
cosponsors. In the Senate, identical legislation is being introduced by 
Minority Leader Tom Daschle and Senators Edward Kennedy, Christopher 
Dodd, and Tom Harkin, as well as a long list of other distinguished 
Senators.
  The events of the past few days have illustrated the urgent need for 
this legislation all too well. In addition to the events concerning the 
mapping of the human genome, we have learned that Burlington Northern 
Santa Fe Railway performed genetic tests on employees without their 
knowledge or consent. The tests were conducted with the goal of 
identifying a predisposition for carpal tunnel syndrome and thereby 
undermining those employees' claims of job-related injuries. 
Unfortunately, this was not the first case of such genetic testing and 
potential discrimination. From the 1960s until 1993, the Lawrence 
Berkeley National Laboratory secretly tested black employees for sickle 
cell anemia, until workers filed a lawsuit that resulted in a 1998 
decision by the U.S. Ninth Circuit Court of Appeals that this practice 
was unconstitutional. During the late 1990s, a study conducted by 
Northwestern National Life Insurance found that, by the year 2000, 15 
percent of employers planned to check the genetic status of prospective 
employees and dependents before making employment offers. Last year, 
the American Management Association's survey of medical testing in the 
workplace found that 3% of responding employers admitted they tested 
employees for breast and/or colon cancer, 1% tested for sickle cell 
anemia, and a handful tested for Huntington's Disease. Moreover, 18% 
collected family medical histories, and about 5% stated that they use 
this information in making decisions about hiring, firing, and 
reassignment.
  This legislation would prevent employers from using predictive 
genetic information to make employment decisions. It would further 
prevent employers from requesting or requiring that workers disclose 
genetic information or take a genetic test. Finally, employers are 
barred from disclosing genetic information without prior written 
informed consent.
  The Genetic Nondiscrimination in Health Insurance and Employment Act 
would also address discrimination in health coverage based on genetic 
information. Too many Americans are deciding not to take a genetic test 
because they are afraid the information could be used by their insurer 
to deny them coverage or raise their rates to unaffordable levels. 
Vital medical decisions like these should be made based on solid 
science and personal reflection, not the fear of insurance 
discrimination. This legislation would prohibit insurers from 
requesting or requiring that an individual disclose genetic 
information. It would prevent health insurance companies from using 
this information to deny, cancel, refuse to renew, or change the terms 
or conditions of coverage. Finally, it would protect the privacy of 
genetic information by forbidding insurers from disclosing it to 
outside parties without prior written informed consent.
  Simply having a given gene almost never means that a person will 
definitely develop a condition. Furthermore, every human being has 
between 5 and 50 genetic mutations that predispose him or her to 
disease. No one should lose their insurance coverage or their job based 
on the fact that she might develop cancer or some other disorder in 10, 
20, or 30 years.
  Genetic science has the potential to transform human health and open 
entirely new frontiers. We must safeguard the future of this research 
by ensuring that genetic information cannot be abused. Americans will 
not continue to support genetic science if they believe the knowledge 
gained will be used against them.
  We can protect the future of genetic research and secure the rights 
of all Americans by passing the Genetic Nondiscrimination in Health 
Insurance and Employment Act. I look forward to working with my 
colleagues to ensure that Congress passes this responsible, 
comprehensive genetic nondiscrimination and privacy law.

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