Clinical Management of Pediatric Genomic Testing.
As sequencing becomes integrated into clinical medicine, many complex ethical questions arise regarding the return of genomic information, especially in pediatrics. Issues center on the best interests of the child, particularly in return of information about adult-onset conditions. These include the child's future autonomous decision-making and access to knowledge about treatable conditions, the child in the family unit, and benefit to family members of learning information which could impact them personally. This article first discusses the framework for returning genomic information, and then ethical issues regarding return of results. Finally it discusses potential harms and benefits, while recognizing that little is known about what these actually are. A new era of genomic information is in its infancy; handling genomic information in a way that provides patients and their families with knowledge that is helpful without causing distress is the greatest challenge.
Division of Genetics and Genomics and The Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, MA, Department of Pediatrics, Harvard Medical School, Boston, MA.
Ingrid A
IA
Holm
Genetics; ethics; exome sequencing; families; genome sequencing; incidental finding; pediatrics; primary finding; return of results; secondary finding