title: Biobank participant support of newborn screening for disorders with variable treatment and intervention options.
abstract: We aimed to better understand biobank participant opinions of the benefits of newborn screening (NBS) for certain disorder types and how terminology used in NBS discourse might impact stakeholder opinion. We conducted a between-subjects randomized survey of 5840 members of the Northwestern University Biobank. The survey contained 12 scenarios, each describing a disorder and its treatment. For each scenario, we varied the terminology used to describe treatment options. One survey version used the term intervention and the other treatment. The outcome measured for each scenario was perceived benefit (for the infant) and importance of testing (for participants). Comparisons were made between participants and between scenarios. Ratings of benefit and importance were not influenced by the use of the term intervention versus treatment within scenarios. Nuances existed in ratings of benefit to the infant and importance to participants amongst scenarios. Participants were most likely to perceive benefit and importance in screening for a disorder if treatment/intervention offered a high chance of improved outcomes. While participants perceived benefit to the infant and importance to themselves in screening for most disorders, nuances in inter-scenario ratings suggest participants weighed availability and type of treatment/intervention in consideration of the benefits of NBS.
authors: Center for Genetic Medicine, Graduate Program in Genetic Counseling, Northwestern University, Chicago, IL, USA. megan.e.bunnell.med@dartmouth.edu.
authors: Megan E
authors: http://orcid.org/0000-0002-2910-9662
authors: ME
authors: Bunnell
authors: Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, MI, USA.
authors: Beth A
authors: BA
authors: Tarini
authors: School of Public Health, University of Illinois at Chicago, Chicago, IL, USA.
authors: Michael
authors: M
authors: Petros
authors: Department of Bioethics, Center for Genetic Research Ethics and Law, Case Western Reserve University, Cleveland, OH, USA.
authors: Aaron J
authors: AJ
authors: Goldenberg
authors: Ann & Robert H. Lurie Children's Hospital, Chicago, IL, USA.
authors: Aishwarya
authors: A
authors: Arjunan
authors: Center for Genetic Medicine, Graduate Program in Genetic Counseling, Northwestern University, Chicago, IL, USA.
authors: Catherine
authors: C
authors: Wicklund
keywords: Benefit; Biobank participants; Intervention; Newborn screening; Treatment