The NTSAD International Tay-Sachs Carrier Testing Quality Control Program is a voluntary laboratory proficiency testing program. The program evaluates laboratory performance of Tay-Sachs enzyme testing in serum and leukocytes. Serum testing is the standard method. However, leukocyte testing is recommended when the person to be screened is pregnant, on birth control pills or is taking any medications which affect hormones; all which may interfere with the accuracy of the serum test.

The program, which was founded and administered by Dr. Mike Kaback at the University of California-San Diego for 25 years, is now being run in the lab of Dr. Mimi Blitzer and Dr. Erin Strovel at the University of Maryland.

The American Academy of Pediatrics (AAP) and the American College of Medical Genetics do not support routine carrier testing in minors when such testing does not provide health benefits in childhood. The AAP and ACMG advise against school-based testing or screening programs, because the school environment is unlikely to be conducive to voluntary participation, thoughtful consent, privacy, confidentiality, or appropriate counseling about test results. For pregnant adolescents or for adolescents considering reproduction, genetic testing and screening should be offered as clinically indicated, and the risks and benefits should be explained clearly. Read the full statement here.