When the results of this survey are considered in conjunction with existing evidence there appears to be a consensus that good quality information in the prenatal period should be an integral part of any NBS programme. The issue of consent is more complex and there is less agreement on the preferred degree of parental involvement in decisions to allow babies to undergo NBS. A policy that both strongly recommends NBS but also allows parental choice appears to be most consistent with the views of LMC in this survey.
The modified questionnaire has good internal consistency. The difference in mean scores between the three groups, and correlations with maternal anxiety and depressive symptoms, lend construct validity to the scale. The Vulnerable Baby Scale appears to be suitable for assessing maternal perceptions of the vulnerability of their young babies in clinical and research settings although further research, with larger samples, may be necessary to fully establish the scale's psychometric properties.
Scientific and technological advances are lending pressure to expand the scope of newborn screening. Whereas this has great potential for improving child health, it also challenges our current perception of such programmes. Standard newborn screening programmes are clearly justified by the fact that early detection and treatment of affected individuals avoids significant morbidity and mortality. However, proposals to expand the scope and complexity of such testing are not all supported by a similar level of evidence for unequivocal benefit. We argue that screening for genetic susceptibility to complex disorders is inherently different from standard screening and, while of potential value, must be considered separately from conventional testing.
Newborn genetic screening to identify infants at risk for type 1 diabetes is not associated with elevated levels of maternal anxiety, depressive symptoms, or heightened perceptions of infant vulnerability. However, responses to subjective assessment questions suggest that it is possible that more subtle effects on mothers do occur, and this requires further investigation.
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