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UCP Submits Comments on Genetic Discrimination
United Cerebral Palsy and The Arc submitted comments to the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS) in preparation for an October 18, 2004, hearing on Genetic Discrimination. The SACGHS is attempting to raise awareness about the problem of genetic discrimination and to gather information about the scope and nature of genetic discrimination to encourage Congress to act. President Bush has called for federal legislation to prohibit genetic discrimination in health insurance and employment. In October 2003, the Senate unanimously passed the Genetic Information Nondiscrimination Act, and advocates are still pressing for action in the House of Representatives. In July 2004, the House Subcommittee on Employer-Employee Relations of the Committee on Education and the Workforce held a hearing on the issue. Yet, despite broad bipartisan support for the legislation, further progress in the House remains stalled.
The following letter outlines UCP and The Arc's concerns:
September 17, 2004
Secretary's Advisory Committee on Genetics, Health, and Society
6705 Rockledge Drive, Suite 750
Bethesda, MD 20892
RE: Request for Public Comment on Genetic Discrimination
The following comments are submitted by United Cerebral Palsy and The Arc of the United States in response to the Secretary’s Advisory Committee on Genetics, Health, and Society’s (SACGHS) request for public comments on genetic discrimination.
For more than 50 years, United Cerebral Palsy has been committed to people with disabilities and to effecting public policy that will enhance the ability of people with disabilities to live lives without limits in the communities, neighborhoods, schools and jobs of their choice. United Cerebral Palsy’s national organization and our nationwide network of 105 affiliates in 37 states strive to ensure the inclusion of people with disabilities in every facet of society — from the Web to the workplace, from the classroom to the community. United Cerebral Palsy’s Research and Education Foundation is an internationally recognized leader in research on cerebral palsy and related disabilities.
Founded in 1950, The Arc of the United States is the national organization of and for people with mental retardation and related developmental disabilities and their families. The national organization and our nearly 1,000 chapters nationwide are devoted to promoting and improving supports and services for people with mental retardation and other disabilities and their families. The association also fosters research and education regarding the prevention of mental retardation in infants and young children.
The disability community is, in general, highly supportive of genetic testing. Disability organizations, including The Arc of the United States, have participated in The Human Genome Project, a collaboration of scientists worldwide. Disability professionals understand that errors in our genes are responsible for an estimated 3000 to 4000 clearly hereditary diseases, disabilities and conditions. They play a part in cancer, heart disease, diabetes and many other common conditions, such as mental retardation.
On the other hand, genetic testing is clearly harmful if the information is used to deny jobs or insurance, or if it leads to other forms of discrimination. We already know that the threat of genetic discrimination leads people to decline genetic screenings and other health services to avoid revealing information that may be used against them. For example, the Journal of the American Medical Association reported in 2000 that only 57% of women at risk for breast cancer seek genetic testing, and 84% of those who decline the test do so because they fear genetic discrimination. Genetic scientists have warned repeatedly that progress in the field of genetic medicine depends on the willingness of individuals to submit to genetic tests without fear of discrimination.
Discrimination based on the presence of a disability has always been an issue of great concern to both The Arc and United Cerebral Palsy. People with mental retardation, cerebral palsy and other disabilities have long been discriminated against in both insurance and employment. Discrimination is an enormous challenge to people who are treated differently, given lesser opportunities, simply based on disability, and it is something that is faced every day in every community by thousands and thousands of people who are differentiated by disability.
Now families and individuals must fear a different type of discrimination, one that is emerging due to the increasing use of genetic testing for the purpose of exposing the presence of any abnormal or defective genes. This new phenomenon, genetic discrimination, extends the bounds of potential discriminatory activity against people to a new frontier that is based on genetic characteristics alone. It opens the door to excluding people from essential life activities based only on a gene, or genes, that predispose them or their offspring to disabilities, diseases or late-onset disorders. Genetic discrimination is even more insidious, in some ways, than other forms of discrimination, because it occurs when someone is treated differently based on having a gene that may or may not cause the person to manifest a disability sometime in the future. Also, people who are carriers for a genetic condition, who show no signs of the condition themselves, may be discriminated against because of their potential to have a child with the condition, again an event that may or may not ever materialize.
Family members of people with disabilities, for example, or carriers of a genetic condition associated with a disability, may be discriminated against based on their genetic make-up. Such individuals may include people who carry the gene for Fragile X Syndrome, the most common inherited cause of mental retardation. Twenty percent of people with this gene will never display any form of mental retardation. Yet, because they carry the Fragile X gene, they may be treated as though they had mental retardation, even though they do not.
While many states have enacted protections against genetic discrimination in health insurance or employment, or both, these laws are inconsistent and limited in what and who they cover. In the employment arena, they fail to ensure a uniform floor of protections, and as they apply to health insurance, most state laws fail to ensure coverage for a sizable number of those with private health insurance coverage. Because of the Employee Retirement Income Security Act of 1974 (ERISA), many of these laws may not apply to as many as 131 million American workers and families covered under private, employer-based health plans.
At the federal level, with the passage of the Americans with Disabilities Act (ADA) in 1990, discrimination in employment, public accommodations and services based on disability is against the law. It is important to remember, however, that the ADA does not apply to the insurance industry.
Since the ADA applies not only to people with a disability, but to people who may be "regarded" as having a disability or who have a "history" of disability, the ADA should protect individuals against genetic discrimination by employers who may perceive genetic predisposition to disease as a form of disability. People who experience genetic discrimination may be "regarded" as having a disability (because they have an abnormal gene), even though they may not have a disability. These protections, however, are untested and uncertain. Although the Equal Employment Opportunity Commission (EEOC) has brought one suit to enforce these rights, a case against Burlington Northern Santa Fe Railways was settled without a trial, and it is unclear how a court would rule on the EEOC’s interpretation of the law. Although the EEOC determined that "entities that discriminate on the basis of genetic predisposition are regarding the individuals as having impairments, and such individuals are covered by the ADA," they also said that "unaffected carriers of recessive and X-linked disorders, individuals with late-onset genetic disorders who may be identified through genetic testing or family history as being at high risk of developing the disease, are not covered by the ADA."
Also, proving employer bias under the ADA has been a difficult standard of proof for employees to meet, and recent decisions by the Supreme Court have limited the reach of the ADA and narrowed its protections. Thus, the ADA is not likely to provide adequate support for employees seeking to enforce new rights. In any event, the ADA does not protect workers from requirements to provide genetic information to their employers.
The only other federal protection against genetic discrimination is found in the Health Insurance Portability and Accountability Act of 1996 (HIPPA) which places limitations on the exclusion period for pre-existing conditions when people change jobs and prohibits discrimination against individuals based on health status, including their genetic information. While HIPPA extends coverage to people who have genes that predispose them to a disability or disease, or who have genes for a late onset disorder, it may not protect carriers of genetic disorders who do not yet manifest symptoms.
For Americans at risk for genetic discrimination, these gaps in the law pose a serious barrier to their security.
The Arc of the United States and United Cerebral Palsy appreciate the opportunity to comment on this vital issue. In summary, we believe that genetic testing holds enormous promise to prevent disability and health problems and can help people cope more effectively with conditions that are unavoidable. Present and future generations will benefit from the insight into disabling conditions genetic testing and genetic research can provide. Nonetheless, strong protections against genetic discrimination are critical to every man, woman and child in this country. We stand in firm support of federal legislation and/or policy that will clearly negate any American’s having to fear that genetic information will be misused to prevent them from getting the jobs or insurance coverage they need.