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J Community Genet. 2016 Oct;7(4):291-302. Epub 2016 Sep 1.

Biobank participant support of newborn screening for disorders with variable treatment and intervention options.

Author information

1
Center for Genetic Medicine, Graduate Program in Genetic Counseling, Northwestern University, Chicago, IL, USA. megan.e.bunnell.med@dartmouth.edu.
2
Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, MI, USA.
3
School of Public Health, University of Illinois at Chicago, Chicago, IL, USA.
4
Department of Bioethics, Center for Genetic Research Ethics and Law, Case Western Reserve University, Cleveland, OH, USA.
5
Ann & Robert H. Lurie Children's Hospital, Chicago, IL, USA.
6
Center for Genetic Medicine, Graduate Program in Genetic Counseling, Northwestern University, Chicago, IL, USA.

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.

KEYWORDS:

Benefit; Biobank participants; Intervention; Newborn screening; Treatment

Conflict of interest statement

Compliance with ethical standards All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

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