Special Considerations

Genetic Discrimination

Some patients are concerned about the potential for "genetic discrimination," which is the theory that insurance companies could use genetic information to increase premiums or discontinue coverage. The Genetic Information Nondiscrimination Act (GINA) was passed in 2008 and became active in 2009. GINA protects against the use of genetic information (i.e., genetic test results, family history, etc.) in determining eligibility, coverage, and rates for both group and individual health insurance plans. GINA also prohibits employers from making hiring, firing, promotion, and training decisions based on genetic information. Life, disability, and long-term care insurance have no protection from discrimination on the federal level or in many states. An important consideration is that a patient's prior diagnosis of cancer is expected to have a greater impact on insurability than any subsequent genetic information about cancer risk. Therefore, genetic discrimination is often a greater concern for family members who have not been diagnosed with cancer.

Testing of Minors

The American College of Medical Genetics advises that genetic testing should be performed on minors only when the results will have an impact on medical management in childhood or adolescence. Although there are certainly exceptions, cancer is generally an adult-onset disease, even when associated with hereditary predisposition. With hereditary breast and ovarian cancer, screening is usually initiated between age 25 and 35 years, and with HNPCC it is initiated at age 20 to 25 years. Therefore, it is recommended that genetic testing be deferred until the age at which intensive screening is to begin so that the individual can decide for him- or herself if the information is desired. If there is a notably early-onset cancer in a family, predictive genetic testing may be considered younger than age 18 years, but it is generally discouraged.

Less than 50% of hereditary ovarian cancer is explained by current genetic technology. Therefore, many women who undergo genetic testing will not have a detectable mutation, but may still have a suspected hereditary form of cancer. Because ovarian cancer has a high mortality rate, whether or not a hereditary diagnosis is made may have little impact on the woman herself. However, it can be of great importance to family members. Therefore, women with advanced ovarian cancer that is suggestive of a hereditary syndrome should be encouraged to consider DNA banking. DNA banking allows for storage of a DNA sample, making it accessible to family members in the future when more genes are identified. DNA banking is of particular consideration for women with advanced disease and a poor prognosis.

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