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

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.

Factors Influencing Parental Awareness about Newborn Screening

“…Results have shown that Czech mothers in the study sample have only limited NBS awareness and three months post-delivery around one fifth of mothers do not recall any information about NBS. Limited awareness and knowledge about NBS has been demonstrated by previous international studies that have focused on education about NBS [10,11,[17][18][19][20][21][22][23], the informed consent process [7,[24][25][26], and the impact of positive and/or false positive NBS results [2,4,5,9,27]. These studies have been performed in Canada [7,11], the US [2][3][4][5]18,20], the UK [22,23,25,26], Australia [10,17], the Netherlands [24] and Saudi Arabia [21].…”

“…However the evidence demonstrates slow progression towards appropriate parental NBS education and consent. [7]. The issue of explicitly informed parental consent is of particular importance with the emergence of next-generation sequencing technologies and its possible application to NBS testing.…”

“…The approaches to parental consent differ considerably between countries, ranging from a mandatory NBS programme to an opt-out approach and explicit consent [6][7][8].…”

“…Therefore parental education about NBS and consent for screening should be an integral part of the NBS programme. The approaches to parental consent differ considerably between countries, ranging from a mandatory NBS programme to an opt-out approach and explicit consent [ 6 , 7 , 8 ].…”

Effectiveness of parents and clinicians working together to improve pain management in newborns

“…1 Some parents refuse newborn screening because of concerns about pain in their infants. 2,3 Evidence-based guidelines recommend that health care professionals support use of breastfeeding, skin-to-skin care, or sucrose or glucose to reduce newborn pain. 4,5 However, these strategies are underused, and some health care professionals believe that mothers do not wish to be present during painful procedures, 6 which means that many newborns suffer unnecessarily during painful procedures.…”