| Literature DB >> 27302842 |
Holly Etchegary1, Stuart G Nicholls2,3, Laure Tessier4, Charlene Simmonds5, Beth K Potter2, Jamie C Brehaut6, Daryl Pullman7, Robyn Hayeems8, Sari Zelenietz4, Monica Lamoureux4, Jennifer Milburn4, Lesley Turner9, Pranesh Chakraborty4,10, Brenda Wilson2.
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.Entities:
Mesh：
Year: 2016 PMID： 27302842 PMCID： PMC5110054 DOI： 10.1038/ejhg.2016.55
Source DB: PubMed Journal: Eur J Hum Genet ISSN： 1018-4813 Impact factor: 4.246