Considering consent: a structural equation modelling analysis of factors influencing decisional quality when accepting newborn screening. Issue 2 (17th September 2013)

• Record Type: Journal Article
• Authors: Nicholls, Stuart G.; Southern, Kevin W.
• Is Part Of: Journal of inherited metabolic disease. Volume 37:Issue 2(2014)
• Page Start: 197
• Page End: 205
• Publication Date: 2013-09-17
• Subjects: Metabolism, Inborn errors of -- Periodicals; Metabolism -- Disorders -- Periodicals; 616.39042
• DOI: 10.1007/s10545-013-9651-x
• Languages: English
• ISSNs: 0141-8955

Abstract

Abstract: Introduction: Newborn bloodspot screening (NBS) programs generate an ethical tension between promoting the uptake of effective public health measures and facilitating informed consent from individuals. Aim: To explore the factors that affect parental perceptions of decision quality when accepting NBS Methods: Survey of parents with children screened in 2008 ( n = 154, 32 % response rate). Questions were based on previous research and existing measures. The primary outcome was decision quality. Predictors were latent constructs of Attitudes to medicine, Perceived knowledge, Attitudes to screening, and Perceived choice. Responses were analysed using structural equation modelling. Results: Increases in perceived choice and positive attitudes towards screening improved decision quality. Perceived knowledge had a significant and positive relationship with attitudes to screening (0.375, p < 0.01) as did perceived choice on perceived knowledge (0.806, p < 0.01). Attitudes to screening were also significantly influenced by attitudes to medicine, although less so than the effect of perceived knowledge. The model had good fit on all indices (χ 2 = 61.396, df = 48, p = 0.093; CFI = 0.979; RMSEA = 0.043). Conclusions: Our results implicate the presentation of screening as a key determinant of decision quality both in terms of the immediate information regarding the potential benefits and risks, but also the way in which consent processes are managed. If we want to better understand parent decision‐making we need to go beyond analyses of information content, or parental recall of this, but consider the context in which screening is provided.