ArticleHealth expectations : an international journal of public participation in health care and health policy2013
Parental views on informed consent for expanded newborn screening.
Article in Health expectations : an international journal of public participation in health care and health policy, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 2 of them syntheses 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
23 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Acceptability of childhood screening: a systematic narrative review.Public health · 2021Pooled it
- The Role of Information Provision in Economic Evaluations of Newborn Bloodspot Screening: A Systematic Review.Applied health economics and health policy · 2015Pooled it
- Parental involvement in neonatal decision-making: a narrative review.Frontiers in pediatrics · 2026Review
- Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study.Journal of participatory medicine · 2025Article
- Maternity Care Providers' Experiences with Providing Information on Newborn Bloodspot Screening During Pregnancy: A Dutch Survey Study.International journal of neonatal screening · 2025Article
- 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
- Informing Parents about Newborn Screening: A European Comparison Study.International journal of neonatal screening · 2021Article
- Factors Influencing Parental Awareness about Newborn Screening.International journal of neonatal screening · 2019Article
- Feasibility study assessing equitable delivery of newborn pulse oximetry screening in New Zealand's midwifery-led maternity setting.BMJ open · 2019Article
- 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
- Consumer Satisfaction with Newborn Pulse Oximetry Screening in a Midwifery-Led Maternity Setting.International journal of neonatal screening · 2018Article
- Healthcare professionals' and parents' experiences of the confirmatory testing period: a qualitative study of the UK expanded newborn screening pilot.BMC pediatrics · 2017Article
- 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
- Expectations and values about expanded newborn screening: a public engagement study.Health expectations : an international journal of public participation in health care and health policy · 2015Article
- Education and parental involvement in decision-making about newborn screening: understanding goals to clarify content.Journal of genetic counseling · 2015Article
- Current situation and prospects of newborn screening and treatment for Phenylketonuria in China - compared with the current situation in the United States, UK and Japan.Intractable & rare diseases research · 2013Review
- There are some big changes in Health Expectations.Health expectations : an international journal of public participation in health care and health policy · 2013Article
- Impact of new screening technologies: should we screen and does phenotype influence this decision?Journal of inherited metabolic disease · 2013Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAn increasing array of rare inherited conditions can be detected as part of the universal newborn screening programme. The introduction and evaluation of these service developments require consideration of the ethical issues involved and appropriate mechanisms for informing parents and gaining consent if required. Exploration of parental views is needed to inform the debate and specifically consider whether more flexible protocols are needed to fit with the public perception of new developments in this context.
objectiveThis study has been undertaken to explore perceptions and attitudes of parents and future parents to an expanded newborn screening programme in the United Kingdom and the necessary information provision and consent processes. DESIGN AND
participantsA mixed methods study involving focus groups (n = 29) and a web-survey (n = 142) undertaken with parents and future parents. RESULTS AND
conclusionsParents want guaranteed information provision with clear decision-making powers and an awareness of the choices available to them. The difference between existing screening provision and expanded screening was not considered to be significant enough by participants to warrant formal written, informed consent for expanded screening. It is argued that the ethical review processes need to be more flexible towards the provision of information and consent processes for service developments in newborn screening.
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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.