ArticleHealth expectations : an international journal of public participation in health care and health policy2005
Informed choice and public health screening for children: the case of blood spot screening.
Article in Health expectations : an international journal of public participation in health care and health policy, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
21 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Acceptability of childhood screening: a systematic narrative review.Public health · 2021Pooled it
- "Using dried blood spots beyond newborn screening - is Hong Kong ready?": navigating the intersection of innovation readiness, privacy concerns, and Chinese parenting culture.BMC public health · 2024Article
- Academic contributions to the development of evidence and policy systems: an EPPI Centre collective autoethnography.Health research policy and systems · 2023Article
- Information and Parental Consent for French Neonatal Screening: A Qualitative Study on Parental Opinion.International journal of neonatal screening · 2023Article
- 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
- What is in a Name? Parent, Professional and Policy-Maker Conceptions of Consent-Related Language in the Context of Newborn Screening.Public health ethics · 2019Article
- A qualitative systematic review of factors influencing parents' vaccination decision-making in the United Kingdom.SSM - population health · 2016Review
- Consent for newborn screening: parents' and health-care professionals' experiences of consent in practice.European journal of human genetics : EJHG · 2016Article
- Framing optional genetic testing in the context of mandatory newborn screening tests.BMC medical informatics and decision making · 2015Article
- Education and parental involvement in decision-making about newborn screening: understanding goals to clarify content.Journal of genetic counseling · 2015Article
- Parents' responses to receiving sickle cell or cystic fibrosis carrier results for their child following newborn screening.European journal of human genetics : EJHG · 2015Article
- Assessment of the Knowledge and Attitudes of Saudi Mothers towards Newborn Screening.BioMed research international · 2015Article
- Considering consent: a structural equation modelling analysis of factors influencing decisional quality when accepting newborn screening.Journal of inherited metabolic disease · 2014Article
- Young adults' pre-existing knowledge of cystic fibrosis and sickle cell diseases: implications for newborn screening.Journal of genetic counseling · 2014Article
- Parental views on informed consent for expanded newborn screening.Health expectations : an international journal of public participation in health care and health policy · 2013Article
- Factors associated with knowledge of and satisfaction with newborn screening education: a survey of mothers.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- Parental information use in the context of newborn bloodspot screening. An exploratory mixed methods study.Journal of community genetics · 2012Article
- Parental attitudes toward ethical and social issues surrounding the expansion of newborn screening using new technologies.Public health genomics · 2011Article
- Shared decision-making: the debate continues.Health expectations : an international journal of public participation in health care and health policy · 2005Article
- Understanding Midwives' Preferences for Providing Information About Newborn Bloodspot Screening.MDM policy & practiceArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo examine parents' and health professionals' views on informed choice in newborn blood spot screening, and assess information and communication needs. DESIGN AND
participantsA qualitative study involving semi-structured telephone interviews and focus groups with 47 parents of children who were either found to be affected or unaffected by the screened conditions, and 35 health professionals with differing roles in newborn blood spot screening programmes across the UK. RESULTS AND
conclusionsParents and health professionals recognize a tension between informed choice in newborn blood spot screening and public health screening for children. Some propose resolving this tension with more information and better communication, and some with rigorous dissent procedures. This paper argues that neither extensive parent information, nor a signed dissent model adequately address this tension. Instead, clear, brief and accurate parent information and effective communication between health professionals and parents, which take into account parents' information needs, are required, if informed choice and public health screening for children are to coexist successfully.
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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.