At-Home Genetic Testing Position Statement

The National Society of Genetic Counselors (NSGC) advises consumers to consider the risks, limitations, and psychological implications of genetic testing for themselves and their families before purchasing an at-home genetic test (i.e. direct-to consumer, consumer-directed, consumer initiated, etc) without the involvement of a clinical genetics provider. Companies providing at-home genetic testing should offer genetic counseling or independent genetics expertise to help consumers understand genetic test results with potential healthcare implications in the context of family and medical history. Companies offering at-home genetic testing are responsible for ensuring their consumers understand the accuracy and reliability of all the information generated through these tests, whether through interpreted reports or raw data files. Raw data files have many limitations, including false-positive and false-negative data. Any genetic variants identified in raw data files should be confirmed in a clinical laboratory before being used in healthcare decision-making. Results obtained through at-home genetic tests should be reviewed with a genetics specialist, as some findings may need to be confirmed in a clinical laboratory before being used in healthcare decision-making.

NSGC recognizes that companies offering at-home genetic testing have the potential to expand access to genetic testing, but cautions that only clinical-grade testing interpreted by healthcare professionals with genetics expertise should be used to inform decisions about preventive care, diagnosis, or medical management. NSGC urges individuals who are concerned about whether at-home genetic test results meet this standard to consult a clinical genetics provider for pre- and/or post-test genetic counseling.

(Approved June 2019)

 

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