Informed choice and public health screening for children: the case of blood spot screening

Abstract

Objective To examine parentsÕ and health professionalsÕ views on informed choice in newborn blood spot screening, and assess information and communication needs.Design and participants A qualitative study involving semi-structured telephone interviews and focus groups with 47 parents of children who were either found to be affected or unaffected by the screened conditions, and 35 health professionals with differing roles in newborn blood spot screening programmes across the UK.Results and conclusions Parents and health professionals recognize a tension between informed choice in newborn blood spot screening and public health screening for children. Some propose resolving this tension with more information and better communication, and some with rigorous dissent procedures. This paper argues that neither extensive parent information, nor a signed dissent model adequately address this tension. Instead, clear, brief and accurate parent information and effective communication between health professionals and parents, which take into account parentsÕ information needs, are required, if informed choice and public health screening for children are to coexist successfully.

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

“…Several studies have found that having adequate information improved parents' experiences of positive screens. 31,35,37 In our study, such parents recounted confusion and distress, with some having no memory that their child had even been screened. Providing key information well before delivery could help alleviate later distress by preparing parents for the possibility of positive screening results, and reinforcing the difference between screening and diagnosis.…”

“…Our findings are congruent with previous research that noted that the issue of consent is complex, with little consensus on the amount of parental involvement required for screening. 6,30,31 Other studies reported that providers who viewed obtaining consent as relatively easy (eg, midwives) appeared to favor an informed consent approach, in contrast to many providers who saw the process as time consuming and impractical (eg, pediatricians). 6 Meaningful parental understanding about NBS is a prerequisite for informed consent, but the importance of education is relevant even where screening is mandated.…”

“…23,24 To date, the literature concerning consent and newborn screening has generally focused on attitudes toward consent policy. 7,[25][26][27][28][29] Although this is revealing, occasionally showing conflicting attitudes toward the need for consent, 6,30,31 there is a lack of descriptive research that depicts how the offer of NBS is made to parents, making it difficult to determine the experience of consent in practice. Understanding the experiences of those actually involved in the consent process may provide valuable descriptive information for NBS programs and providers.…”

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

“…Although numerous papers focused on parents' information needs, these were sometimes inferred from guidelines or from health professionals' views rather than by asking parents directly. Studies using parent samples found that the following topics were valued: l testing -how this is carried out 14,66,70,76,77 l results -when they are provided and how 14,26,63,70,76,77 l the purpose of screening 62,63,70,77 l choice 14,62,66,70,72 l conditions screened for: 14,70,76 ¢ detailed 76 ¢ basic and implications 12,14 l storage 30,68,77 l treatment 63,70,76 l carriers 29,64,78 l the importance of having a child screened/benefits 62,63 l risks -infections 70,78 l the need for further samples/how to respond if in the USA 26,78 70 l information about the fact that screening uses deoxyribonucleic acid (DNA) 70 l heritability 76 l screening alternatives (e.g. testing later in life) …”

“…being included in the review, 8,12,14,15,17,19,20,25,26,[28][29][30]33, covering NBS in a number of different countries: England (n = 11 8,14,25,62,66,70,72,[78][79][80]83 ), Wales (n = 2 85,86 ), France (n = 1 89 ), Germany (n = 1 15 ), the Netherlands (n = 1 29 ), USA (n = 20 17,19,26,30,33,61,63,64,71,[74][75][76]81,82,84,87,88,90,91,93 ), Canada (n = 4 12,65,…”