(Adopted 2017, replacing 2012 version; revised 2025)

The National Society of Genetic Counselors (NSGC) generally discourages predictive genetic testing of asymptomatic minors for adult-onset conditions and predispositions. There are circumstances, however, in which testing of a minor may be appropriate. The NSGC strongly recommends pre- and post-test genetic counseling, as there are many factors that require in-depth consideration before testing of a minor, including but not limited to:
•        Clinical management implications, psychological impact on the minor and family members, and availability of follow-up specialists
•        Autonomy, age, and capacity of the minor to assent or consent
•        Appropriate test selection, favoring a narrow scope of testing 
•        Process, timing, and plan for results disclosure, prioritizing direct disclosure to the minor when appropriate
•        Institutional, state, and federal laws and policies, including those relating to genetic discrimination
The NSGC recognizes that the implications of testing minors are evolving as we learn more about disease-onset and treatments; the decision for an individual to pursue or defer testing may need to be reassessed over time. There are other settings in which minors may receive test results for adult-onset conditions (e.g., genomic sequencing, newborn screening, secondary or incidental findings); however, these are outside the scope of this position statement.

Do you have positive or constructive feedback regarding this statement? Please submit a comment to be considered during by the NSGC Position Statement Workgroup (PSW) when the statement is up for review. Comments can be submitted anonymously. Log-in is required as this feedback option is available only to NSGC members. Please note that submitting feedback is unlikely to lead to a direct response from the PSW. Comments will be considered when the position statement is reviewed.