(Approved June 2019, Revised November 2025)
The National Society of Genetic Counselors (NSGC) recognizes that consumer-initiated genetic testing (CIGT), including both direct-to-consumer and clinician-mediated options, has expanded access to genetic information and can empower individuals to engage more actively in their health. NSGC advises consumers to carefully consider the benefits, risks, limitations, and privacy implications of genetic testing for themselves and their families before purchasing CIGT. These tests vary in analytical and clinical validity, scope of results, variant interpretation and reporting, regulatory oversight, and the degree of healthcare professional involvement, all of which can significantly affect interpretation and follow-up care. Companies offering CIGT should provide consumers with resources to understand the information generated through these tests, including interpreted reports or raw data files. Additionally, companies should be transparent about privacy practices, data storage, and third-party data sharing.
As with any genetic testing, when making decisions about preventive care, diagnosis, or medical management, consumers should use only genetic tests that are generated by laboratories that employ validated methods and follow regulatory guidelines whenever applicable. NSGC recommends pre-test and/or post-test genetic counseling for individuals who are concerned about whether CIGT meets their needs.
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