MODULE 3

Genetic counseling & genetic testing

Clinical vs research genetic testing

You or a family member may have already undergone genetic testing for SCA27B through a research study. There are a number of important differences between research genetic testing and clinical genetic testing.

CLINIAL GENETIC TESTING is ordered by a healthcare provider and done by a lab that follows strict quality standards set by the federal government. The results will become a part of your medical record. 

RESEARCH GENETIC TESTING performed because of your participation in a research study does not require the same quality standard as clinical genetic testing. The results of research testing are usually not put into your medical record and may not be given back to you at all. Some research studies do provide participants with their genetic testing results. However, research results should be verified through clinical genetic testing because the accuracy of research testing may vary, and the interpretation of the results may depend on your individual circumstances. Some clinical trials may also require clinical genetic testing before allowing participants to enroll.

Only clinically confirmed research results should be used for making medical management decisions and for informing the testing of at-risk relatives.

Currently, clinical genetic testing for SCA27B is being performed by the University of Chicago.