People may be unwilling to participate in research and to share information about their genetic status with their health care providers or family members because of concern about misuse of this information. As genetic research progresses, and preventive and treatment strategies are developed, it will be increasingly important that discrimination and the fear of discrimination not be a roadblock to reaping the benefits. Genetic information has already been used by insurers to discriminate. In the early 1970's, some insurance companies denied coverage and charged higher rates to African Americans who were carriers for the gene for sickle cell anemia. Recent studies have documented cases of genetic discrimination against people who are healthy themselves but who have a gene that predisposes them or their children to a later illness such as Huntington's disease.
Most people get their health insurance through their employer.
For individuals and small groups, insurance providers use medical history as well as individual risk factors, such as smoking, to determine whether to provide coverage and under what terms. This is known as underwriting. Insurers fear that individuals will remain uninsured until, for example, they receive a genetic test result indicating a predisposition to some disease such as breast or colon cancer. Insurers can use other phenotypic indicators, patterns of inheritance of genetic characteristic, or even requests for genetic testing as the basis for discrimination. Meaningful protection against genetic discrimination requires that insurers be prohibited from using all information about genes, gene products, or inherited traits to deny or limit health insurance coverage.