Newborn screening is the programme through which newborn babies are screened for a variety of conditions shortly after birth. Programmes such as this are individually oriented but resemble traditional public health programmes because they are targeted at large groups of the population and they are offered as preventive interventions to a population considered healthy. As such, an ethical tension exists between the goals of promoting the high uptake of supposedly ‘effective’ population-oriented programmes and the goal of promoting genuinely informed decision-making. There is, however, a lack of understanding with regard to how parents experience the tension between promoting uptake and facilitating informed choice. This paper addresses this issue, and data are presented to show how aspects of the timing, presentation of information and procedural routinisation of newborn screening serves to impact on the decisions made by parents.
- genetic screening/testing
- heel prick
- informed choice
- informed consent
- population policy
- social aspects
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Funding This work was supported by an Economic and Social Research Council (ESRC) postgraduate studentship [PTA-031-2006-00013].
Competing interests None.
Patient consent Obtained.
Ethics approval The study received formal ethics approval from the Liverpool (Adult) Research Ethics Committee and the Lancaster University Research Ethics Committee.
Provenance and peer review Not commissioned; externally peer reviewed.