Evidence map›Paper›PMID 31288776›Full record

ArticleBMC pediatrics2019

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

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In one paragraph

Article in BMC pediatrics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Informing Parents about Newborn Screening: A European Comparison Study.International journal of neonatal screening · 2021
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Marleen E JansenAmsterdam UMC, Vrije Universiteit Amsterdam, Department of Clinical Genetics and Amsterdam Public Health research institute, Section Community Genetics, de Boelelaan 1117, Amsterdam, the Netherlands. m.jansen5@vumc.nl.ORCID 0000-0002-7847-683X
Lion J M van den BoschNational Institute for Public Health and the Environment (RIVM), Centre for Population Screening, Postbus 1, Bilthoven, 3720 BA, the Netherlands.
Marjolein J HendriksAmsterdam UMC, Vrije Universiteit Amsterdam, Department of Clinical Genetics and Amsterdam Public Health research institute, Section Community Genetics, de Boelelaan 1117, Amsterdam, the Netherlands.
Mariska M J SchefferAmsterdam UMC, Vrije Universiteit Amsterdam, Department of Clinical Genetics and Amsterdam Public Health research institute, Section Community Genetics, de Boelelaan 1117, Amsterdam, the Netherlands.
Marie-Louise HeijnenNational Institute for Public Health and the Environment (RIVM), Centre for Population Screening, Postbus 1, Bilthoven, 3720 BA, the Netherlands.
Conor M W DouglasDepartment of Science and Technology Studies, Faculty of Sciences, York University, 307 Bethune College, 4700 Keele St, Toronto, ON, M3J 1P3, Canada.
Carla G van ElAmsterdam UMC, Vrije Universiteit Amsterdam, Department of Clinical Genetics and Amsterdam Public Health research institute, Section Community Genetics, de Boelelaan 1117, Amsterdam, the Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Biological Specimen BanksBlood PreservationInformed ConsentNontherapeutic Human ExperimentationVoluntary ProgramsAdultConfidentialityFemaleFocus GroupsHumansInfant, NewbornInterviews as TopicNeonatal ScreeningNetherlandsPamphletsParentsNeonatal dried bloodspotsParental perspectivesPolicy-makingRetentionSecondary use

Identifiers

PMID31288776
PMCPMC6615086

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.