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New Legislation to Protect Genetic, Health Privacy

New Legislation to Protect Genetic, Health Privacy

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 four letters of the four chemicals
that make up DNA, that formula would fill 1,000 one-thousand-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 Connie Mack and Mark 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.

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