This study assessed the implications of changing the protocol for newborn screening for Duchenne muscular dystrophy (DMD) to make choice more explicit. In the intervention group, if screening was requested, a separate card was used. Mothers from both intervention and control groups completed a questionnaire providing data on satisfaction, awareness the test was optional, choice and worry. Overall the intervention did improve satisfaction and awareness that the test was optional with no increase in levels of worry. However, some mothers felt they had been given a choice about screening, but were not aware that the test was optional. There is evidence that even with a rigorous service delivery protocol situations do arise where a decision to screen may not be ‘consented’. This raises important questions about the feasibility of obtaining consent for other newborn screening tests and subsequent storage of DNA.
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.
This study aimed to evaluate the educational needs of midwives about newborn screening and medical genetics and make recommendations about appropriate educational interventions. A questionnaire was completed by a group of midwives in Wales (n=607) detailing their educational needs. Three focus groups (n = 24), provided qualitative data on midwives educational needs and potential educational interventions. There was a strong indication that midwives needed more education both in terms of the diseases screened for in the newborn period and medical genetics. If midwives practice is to keep abreast of the changes in society and the advances in science, consideration must be given to more comprehensive post-registration education. A structured framework incorporating self and directed learning and the development of the newborn screening co-ordinators remit is one approach to ensuring midwives are ‘competent, capable and caring’. Such an approach would also help ensure that the recommendations of the Human Genetics Commission (March 2003) are upheld. New technologies need to be used in such a way that mothers and families receive good advice and guidance.
This paper looks at the utilisation of tandem mass spectrometry (MS/MS) in newborn bloodspot screening. MS/MS has the ability to analyse a single blood sample for a relatively large number of neonatal disorders, including inborn errors of metabolism. It has therefore the capability to transform the face of newborn screening. In the UK medium chain acyl-coenzyme A dehydrogenase deficiency (MCADD) has been highlighted as a suitable candidate for screening using MS/MS but debates are still taking place about the disease process and the psychosocial implications of screening. Midwives are central to newborn screening and therefore any expansion of bloodspot screening would have implications for their practice in terms of information giving, parental consent and education. To ensure the continued success of newborn bloodspot screening it is important that midwives practice in accordance with professional standards, are aware of current developments and engage in debates prior to new service delivery implementation. The Department of Health and the National Screening Committee have undertaken a two year pilot study (2004–2006) looking at newborn screening for MCADD and their report, due out 2006/2007, has the potential to contribute constructively to current debates.
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