Genetic testing can be provided on a clinical or research basis. Genetic testing is routinely performed on a small sample of blood.
For well-characterized genes, laboratories offer clinical genetic testing. This means that the laboratory meets certain federal standards (called CLIA-approval) that ensure reliable genetic testing. Clinical laboratories provide results to patients on a fee-for-service basis. Clinical genetic test results are usually available in 4-6 weeks.
Individuals are often concerned about the risk for insurance discrimination if they undergo genetic testing. These issues will be discussed in detail during the initial genetic counseling session. The Genetic Information Nondiscrimination Act (GINA) was signed into law in May 2008. GINA makes it illegal for health insurers to deny insurance coverage or charge a higher rate or premium to an otherwise healthy individual found to have a potential genetic condition or genetic predisposition towards a disease or disorder. Protections in health insurance went into effect in May 2009. GINA also makes it illegal for employers to use an employee’s genetic information when making hiring, firing, placement, or promotion decisions. Employment protections took effect in November 2009. There are some groups for which GINA does not apply. If you have concerns about whether GINA applies to you, ask your genetic counselor. There is also a state law that offers protection. Your genetic counselor will also discuss the lack of legal protection for life and disability insurance.
When a gene has not yet been discovered, is newly discovered, or is not well understood, sometimes genetic testing is available on a research basis. The genetic counselor will determine whether or not you or your family are eligible for any current research studies and will discuss the details of each study with you during your initial genetic counseling session. Depending on the study, researchers may or may not be able to provide you with the results of this testing. Research genetic testing could require the participation of other members of your family as well.