Health insurance coverage of genetic services in Illinois

As a first step toward the improvement of health insurance coverage and reimbursement for genetic services, our study characterizes the current state of health insurance coverage for genetic services in Illinois.

We used a combination of surveys, interviews, and policy review to obtain data from the largest health insurers in Illinois regarding their coverage of genetic services.

The health insurance companies in this study vary widely on coverage of and attitudes toward genetic services. Policies were most consistent across insurance companies when there was widespread professional agreement regarding genetic testing, as in the case of cystic fibrosis carrier screening. Other policies, including criteria for BRCA testing, were extremely variable across insurers and did not always reflect accurate medical information. We also found that health insurance companies in Illinois seem unlikely to reimburse for services billed directly by genetic counselors.

These findings suggest several strategies for improving billing, reimbursement, and insurance coverage of genetic services, including (1) legislative amendments mandating coverage of genetic counselors' services; (2) creating consistent criteria for genetic testing; (3) increasing genetic professionals' involvement in the development of coverage policies; and (4) educating insurance companies about the value of genetic services.