The National Society of Genetic Counselors (NSGC) encourages deferring predictive genetic testing of minors for adult-onset conditions when results will not impact childhood medical management or significantly benefit the child. Predictive testing should optimally be deferred until the individual has the capacity to weigh the associated risks, benefits, and limitations of this information, taking his/her circumstances, preferences, and beliefs into account to preserve his/her autonomy and right to an open future.
The decision for a minor to undergo genetic testing that could identify variants for adult-onset conditions either specifically or secondarily (e.g. through genomic sequencing) should be made cautiously, and whenever possible, with appropriate assent of the minor. If a minor undergoes genetic testing and results are not disclosed to the child, the healthcare provider should discuss strategies with the parents/guardian for sharing the results as he/she develops capacity, or by the age of majority.
NSGC strongly recommends that families facing decisions to test minors meet with a certified genetic counselor or other healthcare provider with genetics expertise to review the clinical and personal implications of testing (Adopted 2017; replaces 2012 version).
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