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.