Article Text
Abstract
Objectives: To gather information about the practices and attitudes of providers of maternity care with respect to informed consent for newborn screening (NBS).
Methods: A questionnaire concerning information provision and parental consent for NBS was sent to all 1036 registered lead maternity carers (LMC) in New Zealand.
Results: 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.
Conclusions: 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.
Statistics from Altmetric.com
Footnotes
Competing interests: None declared.
Funding: The study was funded by the National Testing Centre and a Masonic Child Health Fellowship awarded to NJK.
Ethics approval: Ethics approval for the study was given by the University of Otago Human Ethics Committee.
▸ The questionnaire is published online only at http://jme.bmj.com/content/vol34/issue9
Read the full text or download the PDF:
Other content recommended for you
- Feasibility study assessing equitable delivery of newborn pulse oximetry screening in New Zealand’s midwifery-led maternity setting
- Infant hearing screening: route to informed choice
- Biobanks for non-clinical purposes and the new law on forensic biobanks: does the Italian context protect the rights of minors?
- Stakeholder attitudes towards the role and application of informed consent for newborn bloodspot screening: a study protocol
- Parental consent for newborn screening in southern Taiwan
- Risk of perinatal mortality in the first year of midwifery practice in New Zealand: analysis of a retrospective national cohort
- Newborn screening: new developments, new dilemmas
- Harm isn't all you need: parental discretion and medical decisions for a child
- Better to hesitate at the threshold of compulsion: PKU testing and the concept of family autonomy in Eire
- Methods for evaluating the benefits and harms of antenatal and newborn screening programmes adopted by health economic assessments: protocol for a systematic review