Parental consent for newborn screening: a discrete choice experiment

Liao, Yifu (2021) Parental consent for newborn screening: a discrete choice experiment. Masters thesis, Memorial University of Newfoundland.

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Abstract

Background: Parental consent is very commonly assumed for newborn bloodspot screening (NBS) in most Canadian provincial screening programs. This falls short of usual norms, and evidence suggests that some parents would prefer an explicit process. This study was designed to inform improvements in NBS consent processes. Objectives: (1) To examine parents’ past experiences with, and attitudes towards, NBS consent processes in Canada. (2) To quantify parents’ preferences towards specific attributes of the NBS consent process, and identify characteristics of subgroups with different preference patterns. Method: A cross-sectional survey that included a discrete choice experiment (DCE) was conducted to capture information on participants’ past experiences with and preferences for NBS consent processes. DCE data were analyzed using conditional logit and latent class (LC) regression models. Results: The sample comprised 715 participants. As an overall group, respondents preferred to have NBS information provided late in pregnancy, for consent not to be assumed by providers, and for the consent decision to always be recorded. Three classes of participants with different underlying preference patterns were identified in the sample. Conclusion: If NBS programs wish to better meet parents’ preferenes, the results indicate specific aspects of the consent process that could be targeted for further examination..

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