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Learning Objective 1: Identify ethical issues that are relevant to the use of stored newborn bloodspots in research.
Learning Objective 2: Identify mothers of newborns who are less likely to have positive attitudes towards the state retention of newborn dried blood spot cards.
Design. This study was a cross-sectional survey administered to 548 mothers of newborns in post-partum units in five North Texas hospitals using the Maternal Attitudes and Knowledge about Newborn Screening Survey, developed by the investigators. Summary statistics were provided each site and surveys were combined for final data analysis. Multiple regression analysis was used to quantify associations between responses and demographic variables.
Results. Overall, knowledge about details of DBS retention was inadequate. The most frequent source of information about NBS was the post-partum nurse. Mothers tended to believe that using newborn bloodspots for research was a good thing, but Medicaid recipients and minorities were more reluctant than others to share dried bloodspots for research.
Clinical Implications. Mothers are not fully informed about the use of infant bloodspots for research. Further research to develop educational interventions that are sensitive to the concerns of parents about DBS storage and that can be implemented antenatally are needed. Furthermore, information from this study will inform policy makers regarding implications of procedures used by state blood spot repositories to obtain permission for donations.