Parental perspectives on retention and secondary use of neonatal dried bloodspots: a Dutch mixed methods study ...

Abstract Background 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). 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 fa... Mehr ...

Verfasser: Jansen, Marleen
Bosch, Lion
Hendriks, Marjolein
Scheffer, Mariska
Marie-Louise Heijnen
Douglas, Conor
El, Carla
Dokumenttyp: Datenquelle
Erscheinungsdatum: 2019
Verlag/Hrsg.: Figshare
Schlagwörter: Medicine / Biotechnology / Cancer / Science Policy / 110309 Infectious Diseases / FOS: Health sciences
Sprache: unknown
Permalink: https://search.fid-benelux.de/Record/base-28983761
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://dx.doi.org/10.6084/m9.figshare.c.4570616

Abstract Background 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). 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. Methods A 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 ...