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

Marleen E Jansen; Lion J M van den Bosch; Marjolein J Hendriks; Mariska M J Scheffer; Marie-Louise Heijnen; Conor M W Douglas; Carla G van El

doi:10.1186/s12887-019-1590-8

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

BMC Pediatr. 2019 Jul 9;19(1):230. doi: 10.1186/s12887-019-1590-8.

Authors

Marleen E Jansen^{1

2}, Lion J M van den Bosch³, Marjolein J Hendriks⁴, Mariska M J Scheffer⁴, Marie-Louise Heijnen³, Conor M W Douglas⁵, Carla G van El⁴

Affiliations

¹ Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Clinical Genetics and Amsterdam Public Health research institute, Section Community Genetics, de Boelelaan 1117, Amsterdam, the Netherlands. [email protected].
² National Institute for Public Health and the Environment (RIVM), Centre for Health Protection, Postbus 1, Bilthoven, 3720 BA, the Netherlands. [email protected].
³ National Institute for Public Health and the Environment (RIVM), Centre for Population Screening, Postbus 1, Bilthoven, 3720 BA, the Netherlands.
⁴ Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Clinical Genetics and Amsterdam Public Health research institute, Section Community Genetics, de Boelelaan 1117, Amsterdam, the Netherlands.
⁵ Department of Science and Technology Studies, Faculty of Sciences, York University, 307 Bethune College, 4700 Keele St, Toronto, ON, M3J 1P3, Canada.

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 new parents: pregnant women (≥20 weeks) and/or their partner, and parents of at least one child (≤5 years).

Results: New 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.

Conclusions: While 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.

Keywords: Neonatal dried bloodspots; Parental perspectives; Policy-making; Retention; Secondary use.

MeSH terms

Adult
Biological Specimen Banks*
Blood Preservation*
Confidentiality
Female
Focus Groups
Humans
Infant, Newborn
Informed Consent*
Interviews as Topic
Neonatal Screening / psychology*
Netherlands
Nontherapeutic Human Experimentation*
Pamphlets
Parents / psychology*
Pregnancy
Surveys and Questionnaires
Voluntary Programs*