Mothering a population: How Danish mothers experience newborn dried blood spot samples and their considerations about re-use of samples for research purposes

Abstract

INTRODUCTION Newborn dried blood spot (NDBS) samples have a primary clinical purpose of screening, but often also a secondary purpose of re-use for research purposes. This study investigates how Danish mothers experience the sample being taken, their considerations about potential re-use for research, and their reflections on the level of information they receive about NDBS samples and their re-use for research purposes. METHODS This study is based on semi-structured interviews with 19 mothers of newborn babies, conducted within the first year after the birth. Mothers were recruited through online media and interviewed in their own homes or at the university. All interviews were coded thematically with an abductive approach. RESULTS Generally, mothers have difficulties in recollecting the NDBS sample. Overall, they are pleased with the re-use of samples for research purposes. However, some mothers are concerned about the consent procedure. The mothers did not have one specific attitude towards more information about the research done using newborn samples. Based on our findings, we recommend a higher level of transparency regarding national genetic research in general; and, for the NDBS samples specifically, a more complete information and consent procedure. Further, we encourage more studies into what kinds of information parents might find useful about research based on NDBS samples. CONCLUSIONS Mothers do not always remember experiencing the NDBS sample, are generally positive towards re-use for research purposes, but unsure about best information level.