Biomedical Engineering Reference
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which could lead to people being stigmatized by employers, health
insurance companies, or others.
DNA Marker Tests
In the future, DNA markers may help predict who is likely to have
a heart attack or develop arthritis, or even whose arthritis pain
might be eased with a specific pill. Today, DNA markers are very
powerful tools to identify with a great degree of certainty whether
Could the Results of a Genetic Test Be Used to Harm You?
Many experts, including Dr. Francis Collins, director of the National Human Genome
Institute, have raised concerns that genetic tests could lead to genetic discrimination.
They worry that insurance companies may deny insurance or that an employer may deny
employment to an individual found to have inherited a gene that gives him or her an
increased risk of developing a disease. Current laws prevent discrimination against
people with medical conditions when it comes to health insurance, under the 1996
Health Insurance Portability Act (HIPPA), and in employment, under the Americans with
Disabilities Act (ADA). What about someone who is not currently ill but is identified as
having inherited an elevated risk of disease? Most Americans obtain health insurance
through their employers. HIPPA does protect against denial of group health insurance
based on an employee's genetic information, without defining whether the risk is based
on family history or the result of a genetic test. HIPPA does not address individual health
insurance. The ADA deals with workplace discrimination for individuals with existing
disabilities, not potential ones. Even though genetic testing is not yet widespread, a few
anecdotal cases of genetic discrimination have been reported.
The Senate passed a bill in 2003 prohibiting discrimination based on the results of
a genetic test, but the House of Representatives has not yet considered the issue.
Although HIPPA strengthened the requirement to protect the privacy of personal medical
information, including family history and results of genetic tests, an insurance company
would know that the genetic test had been performed if it was asked to pay for it.
The results of genetic tests can have an emotional and medical impact on a whole
family. Physicians and genetic counselors work with the patient and the entire family to
make sure the medical and social significance of the results is understood. As more
genetic tests are developed and methods are established to reduce the inherited risk, the
issue will have to be addressed, or people will avoid tests that might allow treatments to
lengthen or improve their lives.
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