Genetic discrimination describes the differential treatment of people or their relatives based on their actual or presumed genetic differences. This is distinguished from discrimination based on having symptoms of a genetic-based disease. Genetic discrimination is aimed at people who appear healthy or whose symptoms are so mild that their functioning and health are not affected. Such individuals may include people who carry the gene for fragile X, 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 gene for fragile X, they may be treated as though they have mental retardation even though they do not.
One of the most common forms of discrimination is the denial of health insurance based on a person’s genes. Insurance companies gather and use medical information to predict a person’s risk of illness and death. They use this risk information to determine which individuals and groups they will insure and at what price. That information plays a critical role for people in determining access to health care.
Employment is another area with many reported cases of discrimination. Many individuals believe they were not hired or were fired because they were at risk for genetic conditions. In other cases, individuals who were employed were reluctant to change jobs because they feared losing health insurance coverage.
The American’s with Disabilities Act (ADA) offers protection from discrimination to individuals currently affected by a genetic condition or disease. It also applies to individuals who are regarded as having a disability. The Equal Employment Opportunities Commission, which oversees enforcement of nondiscrimination in employment, has ruled that the ADA applies specifically to individuals who are subjected to discrimination on the basis of genetic information relating to illness, disease, condition or other disorders.
Unfortunately the ADA does not cover the insurance industry. Insurance companies may deny health, life, disability and other forms of insurance to people with defective genes if in the companies opinion there is a sound basis for determining risks consistent with state law.
If you would like more information please contact the National Center for Human Genome Research at 301-402-0911, or visit them online at www.genome.gov.
Phone code: 1512