References

Charles T, Pitt J, Halliday J, Amor DJ Implementation of written consent for newborn screening in Victoria, Australia. J Paediatr Child Health. 2014; 50:399-404

Kai J, Ulph F, Cullinan T, Qureshi N Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice. Health Technol Assess. 2009; 13:(57) https://doi.org/https://doi.org/10.3310/hta13570

Newborn Screening Programme Centre. Health professional handbook: A guide to newborn bloodspot screening for health professionals. 2012. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/390977/Health_Professional_Handbook_2012_v1.0_December_2012.pdf (accessed 21 September 2017)

Newcomb P, True B, Walsh J, Dyson M, Lockwood S, Douglas B Maternal attitudes and knowledge about newborn screening. MCN Am J Matern Child Nurs. 2013; 38:(5)289-94 https://doi.org/https://doi.org/10.1097/NMC.0b013e31829a55e2

NHS Screening Porgrammes. Code of Practice for the Retention and Storage of Residual Newborn Blood Spots. 2005. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/415981/Code_of_Practice_for_the_Retention_and_Storage_of_Residual_Blood_Spots.pdf (accessed 12 October 2017)

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Consent for newborn screening and storage of blood samples

02 November 2017
5 min read
Volume 25 · Issue 11

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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