References
Consent for newborn screening and storage of blood samples
Abstract
Newborn bloodspot screening is a routine procedure that is undertaken in most developed countries in order to identify nine different conditions, including sickle cell disease and cystic fibrosis. It is a procedure that requires parental consent, although studies have shown that parents may be unaware that they are also consenting to the storage of bloodspot samples. As part of a wider study aiming to identify the best means of communicating with parents, this article will examine how midwives can ensure that parents are informed and consent is valid.
Newborn bloodspot screening is seen as one of the most important public health initiatives and is practised in most high-income countries. In England, newborn bloodspot screening is introduced to parents as a recommended routine screen, but assumes an informed consent model. Newborn bloodspot screening screens for nine different conditions:
Responsibility for providing pre-screening information and obtaining consent lies with midwives. The latest available health professionals' handbook (Newborn Screening Programme Centre, 2012) guides health professionals to provide and discuss an information booklet, Screening Tests For You And Your Baby (NHS Screening Programmes, 2014), at the first appointment and again after birth. The handbook states that when obtaining consent for newborn blood spot screening, midwives must ensure that parents understand that they are consenting to the following (UK Newborn Screening Programme Centre, 2012):
The Provision Of Information About Newborn Screening Antenatally project (PINSA) (Ulph et al, 2017) examined how best to communicate information about newborn screening. In this study, data from interviews with parents added to the international body of research raising concerns about how well models of communication prepared parents for newborn bloodspot screening, and whether this affected the validity of consent gained.
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