ArticleEuropean journal of human genetics : EJHG2016
Consent for newborn screening: parents' and health-care professionals' experiences of consent in practice.
Article in European journal of human genetics : EJHG, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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.
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Who cites it
28 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Acceptability of childhood screening: a systematic narrative review.Public health · 2021Pooled it
- Optimizing Informed Consent for Australian Newborn Bloodspot Screening and Research: Consensus Workshop Insights and Recommendations.International journal of neonatal screening · 2026Article
- How parents decide whether to have genomic newborn screening: experiences from BabyScreen.European journal of human genetics : EJHG · 2026Article
- Maternal concern and refusal toward neonatal heel-prick screening: a cross-sectional survey from Türkiye.European journal of pediatrics · 2026Article
- Parental decision making regarding level of newborn screening participation in the homebirth setting.Journal of community genetics · 2025Article
- Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China.BMC medical ethics · 2025Article
- Exploring implementation processes of a parent-targeted educational video for improving newborn pain treatment: A sequential exploratory mixed-methods study.Journal of child health care : for professionals working with children in the hospital and community · 2025Article
- Genomic sequencing in newborn screening: balancing consent with the right of the asymptomatic at-risk child to be found.European journal of human genetics : EJHG · 2025Article
- Parental awareness and perspectives on newborn screening in China: a questionnaire-based study.BMC medical ethics · 2024Article
- The Multi-Omic Approach to Newborn Screening: Opportunities and Challenges.International journal of neonatal screening · 2024Review
- Newborn screening for Duchenne muscular dystrophy: the perspectives of stakeholders.The Lancet regional health. Western Pacific · 2024Article
- Application of machine learning algorithms for accurate determination of bilirubin level on in vitro engineered tissue phantom images.Scientific reports · 2024Article
- What Mothers Know about Newborn Bloodspot Screening and the Sources They Use to Acquire This Knowledge: A Pilot Study in Flanders.Children (Basel, Switzerland) · 2023Article
- Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures.International journal of neonatal screening · 2023Review
- Information and Parental Consent for French Neonatal Screening: A Qualitative Study on Parental Opinion.International journal of neonatal screening · 2023Article
- Are We Ready for Whole Population Genomic Sequencing of Asymptomatic Newborns?Pharmacogenomics and personalized medicine · 2023Review
- Pain points in parents' interactions with newborn screening systems: a qualitative study.BMC pediatrics · 2022Article
- Mothering a population: How Danish mothers experience newborn dried blood spot samples and their considerations about re-use of samples for research purposes.European journal of midwifery · 2022Article
- Article
- The Value of Cognitive Pretesting: Improving Validity and Revealing Blind Spots through the Development of a Newborn Screening Parent Experiences Survey.International journal of neonatal screening · 2021Article
Corrections and comments
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Authors and funding
14 authors.
Funding
Abstract
Consent processes for newborn bloodspot screening (NBS) are variable, with a lack of descriptive research that depicts how the offer of NBS is made to parents. We explored the experience, in practice, of consent for NBS. Semistructured interviews in two Canadian provinces were held with: (1) parents of children offered NBS (n=32); and (2) health-care professionals involved in the NBS process (n=19). Data on recollections of NBS, including consent processes, were utilized to identify emerging themes using the method of constant comparison. Three themes were relevant to NBS consent: (1) The 'offer' of NBS; (2) content and timing of information provision; and (3) the importance of parental experiences for consent decisions. Recollections of consent for NBS were similar between jurisdictions. Excepting midwives and their patients, NBS was viewed as a routine part of giving birth, with little evidence of an informed consent process. Although most parents were satisfied, all respondents suggested information about NBS be provided long before the birth. Accounts of parents who declined screening highlight the influence of parental experiences with the heel prick process in screening decisions. Findings further our understanding of consent in practice and highlight areas for improvement in parent-provider interactions.
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Registered trials
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.