Abstract
BackgroundNeonatal bloodspot screening (NBS) identifies conditions to offer early intervention and minimize irreversible damage. NBS policies guide a comprehensive system including processes for storage of neonatal dried blood spots (NDBS). NDBS retention and secondary use policies have been subject of public debates internationally, suggesting that the public’s perceptions of NDBS policy are not always on par with existing policies. The current study aims to provide insight in relevant factors for new parents in the Netherlands regarding retention and secondary use of NDBS. These factors can be taken into account when developing or updating NDBS policies.MethodsA mixed methods design was used combining an online survey (n = 753), focus groups (6 groups, 37 participants), and individual in-depth interviews (n = 7). The discussed topics included: parental information, obtaining informed consent, support for retention, and support for secondary use. The study population consisted of Dutch-speaking new parents: pregnant women (≥20 weeks) and/or their partner, and parents of at least one child (≤5 years).ResultsNew parents expressed needs for easily accessible information, adequate communication on the retention and (potential) use of NDBS, clearly described safeguards for privacy, a more active consent process, regulation for the actors conducting NDBS research, and parental involvement in decisions on secondary use. Overall, participants were positive about prolonged retention and different types of secondary use if those needs were met.ConclusionsWhile parental involvement is a challenge, our study is an example of gauging parent’s perspectives on NDBS policy and contributes to including these perspectives in the current policy discussion on longer retention. Prolonged retention could be a feasible option in the Netherlands if several prerequisites are met. Therefore, implementation studies involving parents are needed.
Highlights
Neonatal bloodspot screening (NBS) identifies conditions to offer early intervention and minimize irreversible damage
Since new parents decide on NBS for their child(ren) we argue that their perspectives should be taken into account to construct neonatal dried blood spots (NDBS) policy [11]
During pregnancy and shortly after childbirth, new parents receive a leaflet about NBS, including general information on retention and secondary use [29]
Summary
Neonatal bloodspot screening (NBS) identifies conditions to offer early intervention and minimize irreversible damage. NBS policies guide a comprehensive system including processes for storage of neonatal dried blood spots (NDBS). The current study aims to provide insight in relevant factors for new parents in the Netherlands regarding retention and secondary use of NDBS. These factors can be taken into account when developing or updating NDBS policies. Most neonatal bloodspot screening (NBS) programs identify a selection of rare, serious, congenital conditions for which timely detection and treatment early in life prevents or minimizes irreversible damage [1]. All new Dutch parents are offered NBS for their child.
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