If you could find out, years in advance, you had a predisposition for Parkinson's disease, breast cancer, Alzheimer's or diabetes; would you want to know? Would it be helpful to find out what your medical future might hold? Would you be worried that your insurance company could use this medical prediction against you even before you became ill?
Earlier this year, the medical community achieved a milestone in medicine: the complete decoding of the human genome. We are just beginning to understand the enormous benefits of this achievement. Just a few years ago, teams of the world's best researchers spent their careers searching through family studies for clues that might identify the genes responsible for specific human diseases. Today, a graduate student accessing the publicly available sequence can identify in just a few short weeks the genes responsible for many devastating illnesses.
Thanks to the work of the world's top scientists and doctors we are making "predictive" medicine a real possibility, but along with this exciting new field there comes a new fear. Many lawmakers are worried that this information could be used as a source of discrimination. Currently, there is no comprehensive federal law that protects individuals from genetic discrimination in terms of health insurance costs and employment practices. However, a large and diverse group of federal legislators is working towards the passage of genetic nondiscrimination legislation.
"As a doctor and a Senator, I believe protecting our fellow citizens from genetic discrimination is a moral and practical responsibility," concluded my fellow Tennessean and Senate Majority Leader Bill Frist during debate on the Genetic Information Nondiscrimination Act in the Senate. The legislation, which overwhelmingly passed the Senate with a vote of 95-0, represents eight years of bipartisan work to achieve the basic protections for all Americans against genetic discrimination. More than 220 of my colleagues in the House of Representatives have supported a similar bill. As one of the original co-sponsors of the House legislation, I recently wrote to House Speaker Dennis Hastert (R-IL) and Majority Leader Tom DeLay (R-TX) and asked them to bring up this legislation for consideration in the House as soon as possible.
If Americans are to reap the benefits of the genomic era, they must first be assured that the costs and benefits are in balance. For many, the potential long-term pay-off of early disease detection or participation in clinical trials is outweighed by immediate fears of losing their health insurance or their job. According to a Time/CNN poll, three-quarters of Americans surveyed revealed concerns that their genetic information would be accessed by their health insurers. One-third of patients at risk for breast and ovarian cancer declined to take a genetic test that would help determine their best treatment options because of the fear of discrimination. More than two-thirds of genetic cancer counselors surveyed reported that they would not bill their own health insurance providers for genetic testing because of similar concerns.
Genetic nondiscrimination legislation would extend basic protections to all Americans from the collection, disclosure or use of their genetic information. The legislation would bar health insurers from denying coverage or adjusting premiums based on genetic information. It would also prohibit employers from using genetic information as a basis to hire, fire, or promote employees.
These extraordinary accomplishments offer the promise of a new era of preventive medicine. More than 500 genetic tests are available now, and many more are in development. The accuracy, sophistication, and number are growing at a rapidly accelerating pace. These tests will literally save lives. For example, early detection of colon cancer alone could prevent more than 50,000 deaths a year!
We must not allow the fear of discrimination on the basis of genetic information to impede this groundbreaking medical progress. It is essential that Congress complete action early in 2004 to fully realize the potential of genomics for improving human health and our quality of life.
