Uncertain futures and unsolicited findings in pediatric genomic sequencing: guidelines for return of results in cases of developmental delay

Table 1 UMCU’s return of UFs policy for WES in parent–child trio-analysis

Child: UF categories	Policy standpoint	Parents: UF categories	Policy standpoint
Severe conditions medically actionable^a in childhood	Return	Severe conditions medically actionable† in childhood	Not applicable
Severe conditions only medically actionable in adulthood	Recommend returning, but allow opt-out	Severe conditions only medically actionable in adulthood	Recommend returning, but allow opt-out
Severe medically inactionable conditions	Withhold	Severe, medically inactionable conditions	Recommend withholding, but allow opt-in
Carrier-status for severe conditions with X-linked or autosomal recessive inheritance pattern	Withhold	Carrier-status for severe conditions with X-linked or autosomal recessive inheritance pattern	Recommend withholding, but allow opt-in

^a ‘Medically actionable’ means that there is treatment or prevention (e.g., in the form of controls) to limit the chances of a serious or fatal outcome. For inactionable conditions such interventions/preventive measures are lacking

ISSN: 1472-6939