AimTo explore new mothers' knowledge of newborn screening, and their attitudes towards issues surrounding sample retention and the potential for blood screening samples to be used for research.MethodsA self-administered mail survey was sent to women who gave birth in Perth, Western Australia during January 2005. A total of 600 women completed the survey.ResultsIt was found that women were aware of newborn screening, however desired further information in order to acquire a more comprehensive knowledge of the test. Further, women reported discomfort (...) with the long-term storage of cards, but they were supportive of using blood samples for medical research, contingent upon the samples being de-identified and parental consent provided.ConclusionsNew mothers need to be provided with comprehensive information about the newborn screening test at a time which is conducive for the assimilation of this information. In addition, whilst supporting health related research using newborn screening samples, new mothers are keen for ethical issues to be sufficiently addressed prior to samples being systematically stored for extended periods of time. (shrink)

The UK has a long established programme of newborn bloodspot screening. This operates under a model of informed choice. Understanding is central to the `informed’ element of an informed choice yet it is rarely assessed. To date most research within the context of newborn bloodspot screening has focussed on parental recall of information. In this paper I argue that simplistic assessments of knowledge through recall fail to reflect more complex notions of understanding. In support of this contention I draw on (...) qualitative interviews with parents of children who have undergone newborn bloodspot screening. (shrink)