The Genetic Information Nondiscrimination Act (GINA) prohibits group and individual health insurers from requesting or requiring genetic tests from beneficiaries. The bill bans the use of genetic information to determine plan eligibility and establish premiums. Similarly, the legislation prohibits employers from requesting or requiring genetic testing and bans the use of genetic information to make hiring and promotion decisions and to determine eligibility for training programs. The act does not extend to individuals who show signs or symptoms of disease. Finally, the bill strengthens Health Insurance Portability and Accountability Act (HIPAA) regulations regarding genetic information in order to improve privacy protections that prevent misuse of health information.
The Middle-Class Position:
Middle Class Supports. Although cases of discrimination based on genetic testing are rare, as genetic testing becomes more widespread the risk that middle-class Americans who depend on health insurance could be denied insurance coverage or be terminated from a job solely for being at genetic risk for a disease is troubling. The legislation will facilitate the individualized approaches to health care that mapping the genome has made possible. Additionally, the bill would bolster popular support for genetic research by alleviating Americans’ fears of discrimination. Limiting the act’s prohibitions to use by employers and insurance companies would not stifle innovation in genetic research.
From the Experts:
“[T]he science of genomic medicine is rocketing forward. But fear of genetic discrimination threatens to slow both the advance of such groundbreaking biomedical research and the integration of the fruits of that research into our nation’s health care. If individuals continue to worry that they will be denied health insurance or refused employment because they have a predisposition to a particular disease, they may forego genetic testing that could help guide medical professionals to lessen their risk, simply because the test identifies them as having such a predisposition. This is about all of us, as there are no perfect specimens at the DNA level; each one of us carries numerous gene variants that increase our risk of developing one disease or another. Therefore, each one of us is at risk for genetic discrimination.” – Francis S. Collins, M.D., Ph.D., Director of the National Human Genome Research Institute (3/8/2007)
“HR 493 very clearly and very specifically safeguards the ability of healthcare providers to use the latest genetic tests and genetic medicines to take care of their patients [and] has solid and well-reasoned protections for research…[By] providing strong protections against the misuse of genetic information, HR 493 allows researchers to explain clearly to potential research participants that it is simply against the law for health insurers or employers to use genetic information to alter health insurance coverage or affect employment.” – Kathy Hudson, Ph.D., Genetics and Public Policy Center (3/8/2007)
Beyond this Bill:
The Genetic Information Nondiscrimination Act ensures that fear of discrimination will not enter into everyday Americans’ calculus of what medical care to seek. The legislation must be strictly enforced to ensure that individuals remain confident in the privacy of their genetic information when used for both medical and research purposes.
Projected cost of sequencing the complete genome of an individual within the next ten years, in dollars: 1,000
Total cost of the 13-year Human Genome Project, including studies of human diseases and experimental organisms, development of new technologies for biological and medical research, and other scientific activities, in dollars: 3 billion
Percentage of cancer genetics specialists who would not bill their own insurance company for colon, breast, or ovarian cancer genetic testing due to fear of genetic discrimination: 68
Percentage of Americans who are concerned that results from a genetic test that can tell patients whether they are at increased risk for a disease like cancer could be used in ways that would be harmful to them: 90
Dr. Francis Collins on the Threat of Genetic Discrimination to the Promise of Personalized Medicine
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