Laura Cavanagh|Catherine Compton|Audrey Tluczek|Roger Brown|Philip M. Farrell
Long?term Evaluation of Genetic Counseling Following False?Positive Newborn Screen for Cystic Fibrosis
University of Wisconsin–Madison|University of Wisconsin–Madison|University of Wisconsin–Madison
abstract crosssectional mixed method study longterm followup evaluation families participated earlier survey understanding cystic fibrosis cf genetics infants falsepositive cf newborn screening nbs results thirtyseven original 138 parents participated followup telephone survey results showed parents received genetic counseling time infants diagnostic sweat tests significantly higher longterm retention genetic knowledge without genetic counseling however groups still misconceptions lacked accurate information actual risk associated cf carrier parents either already informed 65 planned inform 19 children childs carrier status mean child age time disclosure 92 years situational prompts common reasons informing children neither parental knowledge medical literacy parental education predicted whether parents informed children carrier status falsepositive nbs results cf associated parental perceptions child vulnerability 1114 years testing although sample study small findings underscore benefits genetic counseling time diagnostic sweat test offer information assist parents talking children implications one cftr mutation