Information and consent for newborn screening: practices and attitudes of service providers
ABSTRACT To gather information about the practices and attitudes of providers of maternity care with respect to informed consent for newborn screening (NBS).
A questionnaire concerning information provision and parental consent for NBS was sent to all 1036 registered lead maternity carers (LMC) in New Zealand.
93% of LMC in New Zealand report giving parents information concerning NBS, most frequently after delivery (73%) and in the third trimester (60%). The majority (85%) of LMC currently obtain some form of consent (verbal or written) for NBS from parents and consider this to be the ideal approach (94%). Despite this a significant minority of LMC (23%) reported considering that NBS should be mandatory. Of those in our survey who believed that NBS should be mandatory, paradoxically most (89%) still believed that some form of parental consent should be obtained; of those who believed testing should not be mandatory, only a small proportion (10%) would accept parental refusal without question.
When the results of this survey are considered in conjunction with existing evidence there appears to be a consensus that good quality information in the prenatal period should be an integral part of any NBS programme. The issue of consent is more complex and there is less agreement on the preferred degree of parental involvement in decisions to allow babies to undergo NBS. A policy that both strongly recommends NBS but also allows parental choice appears to be most consistent with the views of LMC in this survey.
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ABSTRACT: A challenge in designing effective education for parents about newborn screening has been uncertainty about appropriate content. Arguing that the goals of education may be usefully tied to parental decision-making, we sought to: (1) explore how different ways of implementing newborn screening differ in their approaches to parental engagement in decision-making; (2) map the potential goals of education onto these “implementation models”; and (3) consider the content that may be needed to support these goals. The resulting conceptual framework supports the availability of comprehensive information about newborn screening for parents, irrespective of the model of implementation. This is largely because we argue that meeting parental expectations and preferences for communication is an important goal regardless of whether parents are actively involved in making a decision. Our analysis supports a flexible approach, in which some educational messages are emphasized as important for all parents to understand while others are made available depending on parents’ preferences. We have begun to define the content of newborn screening education for parents needed to support specific goals. Further research and discussion is important to determine the most appropriate strategies for delivering the tailored approach to education that emerged from our analysis.Journal of Genetic Counseling 11/2014; In Press(10.1007/s10897-014-9780-x). DOI:10.1007/s10897-014-9780-x · 1.75 Impact Factor
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ABSTRACT: Introduction: NBS involves testing a small sample of blood taken from the heel of the newborn for a number of serious and life-limiting conditions. In Canada, newborn screening programs fall under provincial and territorial jurisdiction with no federal coordination. To date, we know very little about the underlying beliefs around different consent practices or how terminology is interpreted by different individuals. Differences in attitudes may have important healthcare consequences. This study will empirical data comparing stakeholder opinions on their understanding of consent-related terminology, the perceived applicability of different consent approaches to newborn screening, and the requirements of these different approaches. Methods and Analysis: Parents, healthcare professionals and policy makers will be recruited in the provinces of Ontario and Newfoundland and Labrador. Parents will be identified through records held by each provincial screening program. Healthcare professionals will be purposively sampled on the basis of engagement with newborn screening. Within each province we will identify policy makers who have policy analysis or advisory responsibilities relating to newborn bloodspot screening. Data collection will be by qualitative interviews. We will conduct 20 interviews with parents of young children, 10 interviews with key healthcare professionals across the range of appropriate specialties and 10 with policy-makers at each site (40 per site, total, N=80). The examination of the transcripts will follow a thematic analysis approach. Recruitment started in June 2014 and is expected to be complete by June 2015. Ethics and Dissemination: This study received ethics approval from the Ottawa Health Science Network Research Ethics Board, the Children’s Hospital of Eastern Ontario Research Ethics Board (both Ontario), and the Health Research Ethics Authority (Newfoundland and Labrador). Results will be reported in peer-reviewed publications and conference presentations. The results will have specific application to the development of parent education materials for newborn screening.BMJ Open 10/2014; ACEEPTED. DOI:10.1136/bmjopen-2014-006782 · 2.06 Impact Factor