Attitudes of parents toward the return of targeted and incidental genomic research findings in children

摘要

The power of genomic research techniques is increasingly incorporated into the exploration of many conditions, including, more recently, the genomic profiles of rare (orphan) conditions and pediatric cancers. Consensus guidelines typically advise sharing target and incidental results that are analytically valid, actionable, and clinically significant. Many expert recommendations are rooted in adult perspectives and attempt to weigh potential benefits and harms to the participants, as well as the feasibility of such sharing. Specific expert opinion on the implications of genomic research discovery in a pediatric context is emerging. Adult participants in research strongly voice an interest in being offered genetic research results, including those incidental to the primary aims.