Confidential genetic testing and electronic health records: A survey of current practices among Huntington disease testing centers.
Celeste C EnoStacey K BartonNaghmeh DorraniStephen D CederbaumJoshua L DeignanWayne W GrodyPublished in: Molecular genetics & genomic medicine (2019)
As genetic knowledge grows, linking more genes to late-onset conditions, institutions will benefit from having professional recommendations to guide development of policies for EHR documentation of presymptomatic genetic results. Policies must be sensitive to the ethical differences and patient demands for presymptomatic genetic testing compared to those undergoing confirmatory genetic testing.