When discussing genetic testing with your geneticist or genetic counselor, the following questions should be asked:
An important consideration in deciding if your family should participate in genetic testing is whether the results or “genetic information” can be used against your child. The Genetic Information Nondiscrimination Act (GINA) does protect Americans from discrimination by health insurers and employers, but the federal law does not protect against discrimination in purchasing private health insurance, life insurance, disability insurance or long-term-care insurance. Because a positive genetic test could be used to increase premium rates or deny insurance coverage, some parents purchase life insurance for themselves and undiagnosed children before genetic testing. Or they may choose not to use their health insurance to pay for the testing.