[Congressional Record Volume 142, Number 43 (Tuesday, March 26, 1996)]
[House]
[Pages H2844-H2845]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




               GENETIC DISCOVERIES AND OUR HEALTH PRIVACY

  The SPEAKER pro tempore. Under the Speaker's announced policy of May 
12, 1995, the gentleman from Florida [Mr. Stearns] is recognized during 
morning business for 5 minutes.
  Mr. STEARNS. Mr. Speaker, should an insurance company be able to deny 
children medical coverage because their mother died of an inherited 
heart defect that her children may or may not carry? That is the 
dilemma facing a California father who cannot get family medical 
coverage under his group plan as a result of his wife's death. And that 
is a dilemma crying out for congressional intervention.
  Scientific knowledge of the secrets hidden deep inside our genes is 
advancing at an unbelievable rate. It seems that we learn of a new 
genetic discovery on a weekly basis. But, as researchers find the 
genetic mutations that cause specific diseases or that appear to cause 
a genetic predisposition to specific diseases, a host of ethical, 
legal, and social complications arise that will take our greatest 
efforts to resolve.
  The human genome project is a 15-year, multinational research effort 
to read and understand the chemical formula that creates each of the 
80,000 to 100,000 human genes. If spelled out using the first 4 letters 
of the 4 chemicals that make up DNA, that formula would fill one-
thousand 1,000 page telephone books, representing 3 billion bits of 
information. Often, just a single letter out of place is enough to 
cause disease.
  We cannot read this entire genetic script yet, but advances in 
science indicate that we will be able to soon. In fact, although the 
project is scheduled for completion in 2005, at its current pace, many 
experts believe it will be done before then. That means that we need to 
begin making some very difficult public-policy decisions, now, before 
those decisions are made by self-interested parties.

  Senators Mack and Hatfield introduced legislation in the Senate on 
this issue and I have submitted the companion bill, H.R. 2690, the 
Genetic Privacy and Nondiscrimination Act, in the House. This measure 
will establish guidelines concerning the disclosure and use of genetic 
information and protect the health privacy of the American people. 
Genetic information must not be used--misused--to deny access to health 
insurance.
  This bill will not only safeguard health privacy and help preserve 
insurance coverage, it will also remove potential barriers to genetic 
testing.

[[Page H2845]]

Eliminating the concern about reprisals by insurance companies will 
facilitate more effective use of genetic tests as they are developed 
and, therefore, promote cures and treatments. This will sustain the 
global leadership of the biomedical research industry in the United 
States.
  However, if you can lose your health insurance because your genes 
show that some day you might require that insurance, clinical trials 
will become impossible to conduct and new treatments and cures may not 
be developed. Consequently, it is important to have this protection, 
which will ultimately lead to improved health care for all Americans.
  Congress is moving rapidly now on legislation to reform the American 
health insurance system. It is likely that a bill could pass the House 
this month and the Senate next month. A conference agreement between 
the House and Senate could put the bill on the President's desk well 
before this Congress adjourns. The House bill is H.R. 3070, the Health 
Coverage Availability and Affordability Act of 1996. Sponsored by 
Congressman Michael Bilirakis, this measure is a well-thought-out piece 
of legislation, and I am proud to be a cosponsor.
  The bill prohibits denying insurance coverage to an employee or 
beneficiary on the basis of health status, which is defined as an 
individual's ``medical condition, claims experience, receipt of health 
care, medical history, evidence of insurability, or disability.'' 
Fortunately, I was able to add two simple words to this list under 
health status--``genetic information.'' As medical science discovers 
what secrets our genes carry, the potential misuse of that information, 
whether through insurance or some other venue, becomes an ever-
increasing possibility.
  It is imperative that the strongest possible statutory protections 
exist against applying this information toward genetic discrimination. 
In the future, these discoveries of genetic information could lead to 
employment discrimination. That is why we need to conduct hearings on 
my bill and to pass the rest of this important legislation. Discoveries 
of genetic information could be the civil rights battle of the next 
century.
  These two words make a good piece of legislation better, and I hope 
this language remains in the final health care bill. It is vital to 
ensure that all Americans, like those two little boys in California, do 
not have to go without health insurance because of a misspelling in a 
genetic script that they could not control and did not choose.
  Mr. Speaker, I might point out that similar efforts have been made in 
some 20 States, including Florida, and they have either enacted or are 
studying laws that would limit the use of genetic information by 
insurance companies. According to the Council for Responsible Genetics, 
a nonprofit group that monitors social issues in biotechnology, a 
genetic underclass is being created by employers and insurers who use 
genetic tests to deny coverage or jobs.

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