The Harms of Carrier Status Identification: A Cautionary Warning Against Newborn Sequencing


Two manuscripts by Farrell et al in this volume of The Journal explore the potential psychosocial complications of carrier status notification for sickle cell hemoglobinopathy (SCH) and cystic fibrosis (CF) after newborn screening (NBS). Both articles stem from the Wisconsin Project on Improvement of Communication and Process Outcomes after Newborn Screening. In the first, qualitative telephone interviews with parents were conducted after NBS carrier status was disclosed by a primary care provider to evaluate for effectiveness of results communication, misconception of the child’s risk for disease, and parental anxiety.

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