ArticleHealth expectations : an international journal of public participation in health care and health policy2015
Expectations and values about expanded newborn screening: a public engagement study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
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
19 citing papers in PubMed, 31 citations in OpenAlex.
- Optimizing Informed Consent for Australian Newborn Bloodspot Screening and Research: Consensus Workshop Insights and Recommendations.International journal of neonatal screening · 2026Article
- Article
- Clinical challenges following early detection of ataxia telangiectasia through SCID newborn screening.Journal of human immunity · 2025Review
- Feasibility and Acceptability of a Newborn Screening Program Using Targeted Next-Generation Sequencing in One Maternity Hospital in Southern Belgium.Children (Basel, Switzerland) · 2024Article
- Parental Preferences for Expanded Newborn Screening: What Are the Limits?Children (Basel, Switzerland) · 2023Article
- Perspectives of Rare Disease Experts on Newborn Genome Sequencing.JAMA network open · 2023Article
- Article
- Putting the Patient First: A Scoping Review of Patient Desires in Canada.Healthcare policy = Politiques de sante · 2021Article
- Expanding Neonatal Bloodspot Screening: A Multi-Stakeholder Perspective.Frontiers in pediatrics · 2021Article
- Queensland Consumers' Awareness and Understanding of Clinical Genetics Services.Frontiers in genetics · 2020Article
- Identifying Perceptions and Preferences of the General Public Concerning Universal Screening of Children for Familial Hypercholesterolaemia.Public health genomics · 2019Article
- Dilemma of Reporting Incidental Findings in Newborn Screening Programs for SCID: Parents' Perspective on Ataxia Telangiectasia.Frontiers in immunology · 2019Article
- Policy Making in Newborn Screening Needs a Structured and Transparent Approach.Frontiers in public health · 2017Review
- Consent for newborn screening: parents' and health-care professionals' experiences of consent in practice.European journal of human genetics : EJHG · 2016Article
- Parental intentions to enroll children in a voluntary expanded newborn screening program.Social science & medicine (1982) · 2016Article
- Framing optional genetic testing in the context of mandatory newborn screening tests.BMC medical informatics and decision making · 2015Article
- Stakeholder attitudes towards the role and application of informed consent for newborn bloodspot screening: a study protocol.BMJ open · 2014Article
- Public views on participating in newborn screening using genome sequencing.European journal of human genetics : EJHG · 2014Article
- Understanding the Impact of Different Modes of Information Provision on Preferences for a Newborn Bloodspot Screening Program in the United Kingdom.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
12 authors at 7 institutions in 2 countries.
Funding
Abstract
objectivesNewborn bloodspot screening (NBS) panels have expanded to include conditions for which treatment effects are less certain, creating debate about population-based screening criteria. We investigated Canadian public expectations and values regarding the types of conditions that should be included in NBS and whether parents should provide consent.
methodsEight focus groups (FG; n = 60) included education, deliberative discussion and pre-/post-questionnaires. Data were analysed quantitatively and qualitatively.
resultsQuantitatively, the majority supported NBS for serious disorders for which treatment is not available (95-98, 82%). A majority endorsed screening without explicit consent (77-88%) for treatable disorders, but 62% supported unpressured choice for screening for untreatable disorders. Qualitatively, participants valued treatment-related benefits for infants and informational benefits for families. Concern for anxiety, stigma and unwanted knowledge depended upon disease context and strength of countervailing benefits.
conclusionsAnticipated benefits of expanded infant screening were prioritized over harms, with information provision perceived as a mechanism for mitigating harms and enabling choice. However, we urge caution around the potential for public enthusiasm to foster unlimited uptake of infant screening technologies.
Indexed as
Identifiers
What OpenQuestion holds
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.