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Guest Commentary March 18, 2002
Protecting People from Discrimination Based on Genetic Testing
The Honorable Olympia Snowe
Knowledge in the field of genetics is progressing at a breathtaking pace. In recent years, scientists have accurately identified genes associated with cystic fibrosis, cancer, Parkinson's and Alzheimer's diseases discoveries that have opened new doors in early detection and treatment. Unfortunately, these discoveries have also brought with them fear among families that they or their loved ones might lose health insurance coverage or their job due to genetic discrimination.
The "Genetic Information Non-Discrimination Act of 2002" is the culmination of several months work to bridge partisan differences on protection against discrimination based on genetic information. For the first time, our bill provides not only for health insurance, but also for employment. In April 1996, I introduced the Genetic Information Nondiscrimination in Health Insurance Act legislation that was designed to protect individual's genetic information, results of genetic testing, or requests for genetic testing, from being used against them by their health insurers. Back then, time was on our side as the completion of the Genome was years away.
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However, four years later in June 2000 everything changed with the announcement that the first working draft of the Human Genome was completed. And since that time, science has continued to hurry forward, further opening the door to early detection and medical intervention through the discovery and identification of specific genes linked to a variety diseases.
Unfortunately, like so many other scientific breakthroughs in history, the completion of the Genome not only brought about the prospect for medical advances such as improved detection and intervention but also potential harm and abuse, as the knowledge of individual genetic information could be used against the very same person it is intended to help.
Accordingly, the need for protections against genetic discrimination by both health insurers and employers is becoming more urgent every day. If, because of concerns about the way the information could be used, people are unwilling to use the potential unlocked by the Genome project to take proactive steps to protect their health and that of their loved ones, then we will never reap the true benefits of this discovery.
While we cannot yet prevent diseases such as breast cancer, genetic testing makes it possible for carriers of these diseases to take extra precautions. In fact, early detection is the best weapon we have to combat many of these diseases we can now identify particularly for breast cancer, which strikes almost 192,000 women each year. Technological advances in screenings, coupled with the ability to identify who carries the gene linked to breast cancer, can help us in our efforts to reduce this number. The possibilities for discovery are limited only by the willingness or unwillingness of people to use this knowledge.
The bottom line is that given the advances in science we face two separate issues. The first is to restrict discrimination by health insurers based upon genetic information; the second, to prevent genetic information from leading to employment discrimination.
Successful legislation must ensure protections against insurers using genetic information against patients. Genetic information only detects the potential for a genetically linked disease or disorder, and potential does not equal a diagnosis of disease. However, it is critical that this information be available to doctors and other health care professionals when necessary to diagnose, or treat, an illness. It is this difference that we must recognize as we discuss legislation to protect patients from potential discriminatory practices by insurers.
Unlike our legislative history on debating health privacy matters, the issues surrounding protecting genetic information from workplace discrimination is new. And toward that end, the legislation I introduced creates these protections in the workplace, and provides protection similar that given under other anti-discrimination acts like the Americans with Disabilities Act and title VII of the Civil Rights Act. The threat of employment discrimination is real and therefore it is essential that we take this information off the table before the use of this information becomes widespread. While Congress has not yet debated this specific type of employment discrimination, we have a great deal of employment case law and legislative history on which to build.
The momentum to address this issue has finally reached a critical mass and clearly this is an issue whose time has come. It's my sincere hope that our legislation is the beginning of the end of the debate in the effort to ensure that every one of us is just as protected from discrimination because of what is in our genes as we are from our heritages and our genders.
Olympia Snowe, a Republican, is a U.S. Senator from Maine. The above commentary has been adapted from Sen. Snowe's weekly column, March 15, 2002. To contact her, Click Here.
The above column has been distributed by PoliticsOL.com.
