| Summary: | 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.
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