Considerations in Genetic Testing

When discussing genetic testing with your geneticist or genetic counselor, the following questions should be asked:

  • Which genetic test is appropriate for my child/my family?
  • What are the limitations to genetic testing? How accurate is it?
  • How is genetic testing performed?
  • How much will testing cost and will insurance cover part or all of it?
  • How long does it take to get test results?
  • What type of test results can I expect, and who will explain the test results to me?
  • What will the results mean to my child’s medical management?
  • When and how should I tell my children the test results?
  • Should I consider testing other family members?
  • How does testing of family members differ from the full panel testing for a patient?
  • Can my health insurer or employer discriminate against me based on my test results?
  • Who owns the genetic information for the tests and how private is the information?

Genetic Discrimination

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.

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