Optional screening for DMD: reasons given by mothers for opting in or out

Abstract

Mothers of baby boys in three areas of the UK were offered a newborn screening test for Duchenne Muscular Dystrophy (DMD) as an extra, optional test. They were asked to complete a short questionnaire which provided data on their decision about screening, their reason and their occupation. The aim of the study was to explore the reasons women gave and any associations between reason given, uptake and occupation. The reasons given reflected three perceptions of screening: screening as a routine procedure; screening for reassurance; screening for disease detection. Women who accepted the test were more likely to give a routine reason than those who refused it. Screening was more likely to be seen as providing reassurance as one moved down the occupational hierarchy. Midwives should be aware that even though a screening test is delivered as an optional extra it may still be regarded by some women as routine.

Parental Decision-Making and Acceptance of Newborn Bloodspot Screening: An Exploratory Study

“…A key motivator for accepting screening was to act on the information provided in order to benefit the health of the child. This is consistent with a number of other studies [44] – [46] , and reflects existing screening criteria [47] and much of the discussion around the expansion of newborn screening panels [37] , [48] .…”

Benefits and Burdens of Newborn Screening: Public Understanding and Decision-Making

“…Studies support the use of broader notions of benefit in parental decision-making, and specifically the role that information obtained from screening can provide with respect to empowerment. Parsons et al [137], for example, noted that the majority of reasons given by parents for accepting screening for DMD related to themes of gathering knowledge. As with the attitudes expressed by parents towards newborn screening, much of this knowledge-seeking was related to benefiting the health of the baby through better knowledge of the condition, time to prepare, and the ability to get early help [137].…”

“…Parsons et al [137], for example, noted that the majority of reasons given by parents for accepting screening for DMD related to themes of gathering knowledge. As with the attitudes expressed by parents towards newborn screening, much of this knowledge-seeking was related to benefiting the health of the baby through better knowledge of the condition, time to prepare, and the ability to get early help [137]. This is not to say that all parents want the screening results.…”

“…Thus knowledge may be central to decision-making, but not deterministic of the direction of the decision. This is evidenced by parental discussions of scenarios, such as screening for DMD, in which some parents suggested they would refuse screening because of the lack of benefits, broadly construed [61,137]. This is clearly illustrated in the response of one mother in a UK study who regretted having a screening test for DMD and who indicated she would have refused had she known that the disease was untreatable [138].…”

“…This is clearly illustrated in the response of one mother in a UK study who regretted having a screening test for DMD and who indicated she would have refused had she known that the disease was untreatable [138]. In one of the few studies to actually explore parental decisions, researchers, again in Wales, UK, found that the majority of parents who declined newborn screening for DMD on the basis of 'disease detection' reasons offered the argument that the lack of a cure was a factor in their decision to decline [137]. The finding that the health of the child is regularly invoked as the main reason for having the screening is not only consistent with the original principles on which newborn screening was based [60], but is also in line with the moral principle of beneficence.…”