Consent for newborn screening: parents' and health-care professionals' experiences of consent in practice.

Etchegary H1, Nicholls SG2,3, Tessier L4, Simmonds C5, Potter BK2, Brehaut JC6, Pullman D7, Hayeems R8, Zelenietz S4, Lamoureux M4, Milburn J4, Turner L9, Chakraborty P4,10, Wilson B2.

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Abstract

Consent processes for newborn bloodspot screening (NBS) are variable, with a lack of descriptive research that depicts how the offer of NBS is made to parents. We explored the experience, in practice, of consent for NBS. Semistructured interviews in two Canadian provinces were held with: (1) parents of children offered NBS (n=32); and (2) health-care professionals involved in the NBS process (n=19). Data on recollections of NBS, including consent processes, were utilized to identify emerging themes using the method of constant comparison. Three themes were relevant to NBS consent: (1) The 'offer' of NBS; (2) content and timing of information provision; and (3) the importance of parental experiences for consent decisions. Recollections of consent for NBS were similar between jurisdictions. Excepting midwives and their patients, NBS was viewed as a routine part of giving birth, with little evidence of an informed consent process. Although most parents were satisfied, all respondents suggested information about NBS be provided long before the birth. Accounts of parents who declined screening highlight the influence of parental experiences with the heel prick process in screening decisions. Findings further our understanding of consent in practice and highlight areas for improvement in parent-provider interactions.European Journal of Human Genetics advance online publication, 15 June 2016; doi:10.1038/ejhg.2016.55.