The NWI Urges Congress to Enact Genetic Nondiscrimination
During the past several decades, our understanding of genetics has multiplied as procedures for identifying, analyzing and manipulating DNA have advanced. The federally funded Human Genome Project, a world-wide research effort designed to map and sequence the estimated 100,000 human genes and Celera Genomics have just recently jointly announced the completion of a working draft of the sequence of the human genome. As public concern mounts with the growth of medical technology, it is crucial that restrictions be placed on the accumulation of genetic information by employers and insurers. Without meaningful privacy safeguards and protections against discrimination, the benefits of genetic testing will ultimately be lost as individuals avoid tests in the fear of adverse consequences. Indeed, President Clinton, Dr. Francis Collins of the National Insitutes of Health and Dr. Craig Venter of Celera Genomics in making their announcement all spoke of the need for such effective safeguards in the form of legislation. The National Workrights Institute is calling on Congress to promptly enact genetic nondiscrimination legislation.
Among the many benefits of this growth in genetic technology are the ways they may influence preventive health, reproductive planning and eventually therapies to cure illnesses with a genetic component. While no one can deny that this knowledge may be a blessing in finding cures to diseases with genetic origins, including Alzheimer’s, Huntington’s and many forms of cancer, the immediate consequences of such advances have lead to a number of forms of individual discrimination.
The ability to identify individuals based on genetic characteristics necessarily predates the ability to use this information in the treatment of the corresponding diseases. Furthermore, genetic information only indicates a predisposition or susceptibility to future illness; such information does not necessarily indicate when an individual will develop symptoms or how severe the symptoms will be. In fact, many people who test positive for genetic mutations associated with certain conditions will never develop those conditions at all. Many individuals identified as having a hereditary condition are, indeed, healthy. Genetic information does not necessarily diagnose disease.
Yet we have already encountered the use of genetic information as the basis for discrimination both in employment settings and in the health insurance industry.
In a 1996 Georgetown University study of 332 families belonging to genetic disease support groups, 22% of the respondents stated that they that they had knowingly been refused health insurance and 13% stated that they had knowingly been terminated from their jobs because of the perceived risks attributed to their genetic status.
The U.S. Department of Labor has found that genetic screening in the workplace is on the rise. In 1982 a federal government survey found that approximately 1.6% of surveyed companies were using genetic testing for employment purpose. This accounted for more than 1,500 U.S. companies. In a similar survey conducted by the American Management Association in 1997, that figure had risen to 6-10% of responding employers (well over 6,000 companies). Additionally, the Council for Responsible Genetics has documented hundreds of cases where healthy individuals have suffered insurance and workplace discrimination on the basis of genetic information.
For example, take the case of Christine Demark, a sales representative with an exemplary record. She was fired when her employer found out that she was at risk for Huntington’s disease. The employer had been notified by a co-worker of Christine’s that she had been going to the required counseling before undergoing testing. Subsequently, she was demoted to a customer service position and eventually fired because of this testing.
As the cost of testing rapidly declines and the number of conditions that can be tested increases, genetic testing may become as common as drug testing is today. Already current statistics for genetic testing rates do not account for the recent advances in identifying the genetic basis for breast cancer and other common genetically related conditions. Indeed, if one really doubts this growing trend of genetic discrimination consider asking an employer or insurer the following question: “If an inexpensive and accurate test existed that would indicate that an individual had a predisposition to a particular illness that would cost thousands of dollars to treat and limit their ability to perform would you be interested conducting such testing?”
Current statutory protections are inadequate in protecting individual privacy and preventing genetic discrimination. To date twenty-six states do not have any statutory protections against genetic discrimination. Even among those that do such protections are not comprehensive; some states only prohibit discrimination in health insurance or in the workplace or only for specific genetic traits.
Legislation is the only way to address the privacy of genetic information and the accompanying discrimination. Incidents of individuals avoiding necessary testing in fear that the information obtained from the tests will be made public are already well documented. In fact a recent CNN poll found that 46% of those polled thought that mapping the human genome would have negative consequences for their lives. It is vital that legislation be enacted to limit the acquisition of genetic information by employers and insurers as well as the accompanying discrimination.
If you would like more information about this issue, please contact Jeremy Gruber, the legal director of the National Workrights Institute. The National Workrights Institute is the only civil rights organization dedicated exclusively to increasing the human rights of employees in the United States and is a founding member of the Coalition for Genetic Fairness.
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