New mothers' awareness of newborn screening, and their attitudes to the retention and use of screening samples for research purposes

Aim: To explore new mothers’ knowledge of newborn screening, and their attitudestowards issues surrounding sample retention and the potential for blood screeningsamples to be used for research.Methods: A self-administered mail survey was sent to women who gave birth inPerth, Western Australia during January 2005. A total of 600 women completed thesurvey.Results: It was found that women were aware of newborn screening, however desiredfurther information in order to acquire a more comprehensive knowledge of the test.Further, women reported discomfort with the long-term storage of cards, but theywere supportive of using blood samples for medical research, contingent upon thesamples being de-identified and parental consent provided.Conclusions: New mothers need to be provided with comprehensive informationabout the newborn screening test at a time which is conducive for the assimilation ofthis information. In addition, whilst supporting health related research using newbornscreening samples, new mothers are keen for ethical issues to be sufficientlyaddressed prior to samples being systematically stored for extended periods of time.