Information and consent for newborn screening: Practices and attitudes of service providers

Department of Women's and Children's Health, Otago Medical School, University of Otago, Dunedin, New Zealand.
Journal of medical ethics (Impact Factor: 1.51). 10/2008; 34(9):648-52. DOI: 10.1136/jme.2007.023374
Source: PubMed


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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Available from: Nicola J Kerruish, Jan 26, 2016
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    • "It has been argued that the complexity of balancing the potential benefits and harms associated with NBS for FXS would require parental counseling and informed consent which currently does not fit with the mandated NBS programs in the USA [Botkin, 2011]. However, a policy that both strongly recommends NBS and allows parental choice is optimal [Kerruish et al., 2008]. In Australia, participation in routine NBS is not mandatory and acceptance is high with only <0.1% declining NBS in NSW [Junek et al., 2012]. "
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    ABSTRACT: Expanded newborn screening (NBS) identifies some disorders for which clinical benefit is uncertain, as well as "incidental" findings (eg, carrier status), thus enhancing the need to inform parents about NBS before sample collection. A self-complete survey was sent to a cross-sectional, stratified, random sample of 5 provider groups in Ontario (obstetricians, midwives, family physicians, pediatricians, and nurses). Univariate and multivariate analyses were used to investigate the effects of core beliefs, perceived barriers, and demographic characteristics on the reported frequency of informing parents about NBS before sample collection. Virtually all of the midwives and almost half of the nurses reported discussing NBS with parents, whereas less than one sixth of the physicians did so. Providers who perceived a responsibility to inform parents were 3 times more likely to report doing so than those who did not perceive this responsibility (odds ratio: 2.9 [95% confidence interval: 2.1-4.1]). Those who lacked confidence to inform parents were 70% less likely to discuss NBS with parents compared with those who did not experience this cognitive barrier (odds ratio: 0.3 [95% confidence interval: 0.2-0.4]). Controlling for these covariates, family physicians and obstetricians were more likely than pediatricians to inform parents. These results provide guidance for capacity building among providers who are positioned to inform parents about NBS before sample collection. Our findings call for targeted educational interventions that consider patterns of provider practice related to prenatal and NBS care, seek to redress confidence limitations, and engage key provider groups in the importance of this professional responsibility.
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