Courtney Berrios|Catherine Koertje|Janelle Noel?MacDonnell|Sarah Soden|John D. Lantos
Parents of newborns in the NICU enrolled in genome sequencing research: hopeful, but not naïve
Children's Mercy Hospital|University of Missouri–Kansas City|Children's Mercy Hospital|University of Missouri–Kansas City|Children's Mercy Hospital|Children's Mercy Hospital|University of Missouri–Kansas City|University of Missouri–Kansas City|Children's Mercy Hospital
2014 institution launched randomized controlled trial rct comparing rapid genome sequencing gs standard clinical evaluations infants suspected genetic disorders study aimed understand parental response use gs newborn babiestwentythree 128 parents whose infant enrolled rct completed retrospective survey interview addressing attitudes gs responses receiving diagnostic information also collected information participants genetic literacy genetic knowledge numeracy symptoms anxiety depressionthe majority reported positive 13 565 neutral 4 4 174 feelings approached gs infant 100 felt gs generally beneficial 12 participants received unifying diagnosis childs symptoms described personal utility information reported diagnosis led changes medical care participants showed understanding psychological risks gs example 21 913 agreed strongly agreed genetic testing could reveal disturbing resultsparents enrolled newborn rct gs demonstrated awareness psychological risk generally held positive beliefs gs perceived benefits outweighed risk