[Congressional Record Volume 141, Number 199 (Thursday, December 14, 1995)]
[House]
[Page H14906]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                              {time}  1445
       SOCIAL POLICIES SHOULD REFLECT LATEST BIOMEDICAL KNOWLEDGE

  The SPEAKER pro tempore. Under a previous order of the House, the 
gentlewoman from New York [Ms. Slaughter] is recognized for 5 minutes.
  Ms. SLAUGHTER. Mr. Speaker, I rise today to announce the introduction 
of H.R. 2748, a bill to prevent the potentially devastating 
consequences of discrimination based on genetic information. I ask my 
colleagues to join us in support of this critical legislation. 
Currently 26 of our colleagues have cosponsored the legislation.
  As Chair of the Women's Health Task Force of the Congressional Caucus 
on Women's Issues, I closely followed reports earlier this year that 
increased funding for breast cancer research had resulted in the 
discovery of the BRCA1 gene-link to breast cancer. While the obvious 
benefits of the discovery include potential lifesaving early detection 
and intervention, the inherent dangers of access to genetic information 
are just becoming evident.
  There is increasing concern that individuals will be denied access to 
health care and that employers might screen employees to eliminate 
those who could cause a rise in group premiums. The following actual 
cases document the cause for concern:
  A 24-year-old healthy and insured woman is asked to sign a lifetime 
waiver exempting her from breast cancer coverage because of familial 
tendencies.
  An insured, previously healthy man suffered a heart attack. After 
DNA-based testing revealed a hereditary form of high cholesterol, his 
insurance company refused to pay the hospital bills or cover future 
treatment for cardiovascular disease.
  As our knowledge and understanding of the biomedical genesis of human 
health and disease increases, our social policies and ethical 
responsibilities need to be adjusted accordingly.
  H.R. 2748, the Genetic Information Nondiscrimination in Health 
Insurance Act of 1995 contains four major provisions. It prohibits 
insurance providers from: First, denying or canceling health insurance 
coverage; or, second, varying the premiums, terms and conditions of 
health insurance coverage on the basis of genetic information; third, 
requesting or requiring an individual to disclose genetic information; 
and fourth, disclosing genetic information without the prior written 
consent of the individual.

  The bill is uniquely focused, comprehensive, timely and includes 
effective enforcement mechanisms. It is focused on the issues of 
insurance discrimination and privacy as they relate to genetic 
information. It comprehensively covers all types of insurance providers 
including self-funded and ERISA plans. It is timely in that it tackles 
insurance discrimination and privacy issues related to genetic 
information before they become epidemic. It provides both State and 
Federal measures to ensure effective enforcement.
  Grave concern about these issues and enthusiastic support for the 
bill has come from the American Cancer Society, the National Breast 
Cancer Coalition, and the Council for Responsible Genetics. The 
National Action Plan on Breast Cancer, the NIH-DOE Working Group on 
Ethical, Legal and Social Implications of Human Genome Research and the 
National Advisory Council for Human Genome Research have joined 
together to address the issue of genetic discrimination and health 
insurance. Their work has resulted in development of four policy 
recommendations. Those recommendations provide the foundation for 
Federal legislation to prevent discrimination on the basis of genetic 
information. This bill encompasses those recommendations.
  This bill, which addresses the profound questions about who will have 
access to genetic information and how this information will be used by 
others, is critically important to the health and well-being of this 
Nation's women, men and children and our future generations.

                          ____________________