ArticlePediatrics2012
Citizens' values regarding research with stored samples from newborn screening in Canada.
Article in Pediatrics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 1 of them a synthesis that pooled it.
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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.
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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
26 citing papers in PubMed, 1 synthesis or guideline pooled it, 45 citations in OpenAlex.
- Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.PloS one · 2014Pooled it
- Prenatal Education of Parents About Newborn Screening and Residual Dried Blood Spots: A Randomized Clinical Trial.JAMA pediatrics · 2016Trial
- Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey.Journal of empirical research on human research ethics : JERHRE · 2014Trial
- Genomic newborn screening: data retention for research and clinical reuse.European journal of human genetics : EJHG · 2026Article
- Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China.BMC medical ethics · 2025Article
- Public and Healthcare Provider Receptivity toward the Retention of Dried Blood Spot Cards and Their Usage for Extended Genetic Testing in Hong Kong.International journal of neonatal screening · 2023Article
- The view of Hong Kong parents on secondary use of dried blood spots in newborn screening program.BMC medical ethics · 2022Article
- Actionability of commercial laboratory sequencing panels for newborn screening and the importance of transparency for parental decision-making.Genome medicine · 2021Article
- Parental perspectives on retention and secondary use of neonatal dried bloodspots: a Dutch mixed methods study.BMC pediatrics · 2019Article
- Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.The Hastings Center report · 2018Article
- Deliberative Engagement Methods for Patient-Centered Outcomes Research.The patient · 2017Article
- Engaging a state: Facebook comments on a large population biobank.Journal of community genetics · 2017Article
- Genomic newborn screening: public health policy considerations and recommendations.BMC medical genomics · 2017Article
- Collective agency and the concept of 'public' in public involvement: A practice-oriented analysis.BMC medical ethics · 2016Article
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.American journal of human genetics · 2015Review
- 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
- Storage and use of Newborn Screening Blood Specimens for Research: Assessing Public Opinion in Illinois.Journal of genetic counseling · 2015Article
- Education and parental involvement in decision-making about newborn screening: understanding goals to clarify content.Journal of genetic counseling · 2015Article
- Public concerns regarding the storage and secondary uses of residual newborn bloodspots: an analysis of print media, legal cases, and public engagement activities.Journal of community genetics · 2015Article
- The Human Genome Project, and recent advances in personalized genomics.Risk management and healthcare policy · 2015Review
Corrections and comments
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Authors and funding
12 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesNewborn screening (NBS) programs may store bloodspot samples and use them for secondary purposes. Recent public controversies and lawsuits over storage and secondary uses underscore the need to engage the public on these issues. We explored Canadian values regarding storage and use of NBS samples for various purposes and the forms of parental choice for anonymous research with NBS samples.
methodsWe conducted a mixed-methods, public engagement study comprising 8 focus groups (n = 60), an educational component, deliberative discussion, and pre- and post-questionnaires assessing knowledge and values toward storage and parental choice.
resultsCanadian citizens supported the storage of NBS samples for quality control, confirmatory diagnosis, and future anonymous research (>90%). There was broad support for use of NBS samples for anonymous research; however, opinions were split about the extent of parental decision-making. Support for a "routinized" approach rested on trust in authorities, lack of concern for harms, and an assertion that the population's interest took priority over the interests of individuals. Discomfort stemmed from distrust in authorities, concern for harms, and prioritizing individual interests, which supported more substantive parental choice. Consensus emerged regarding the need for greater transparency about the storage and secondary use of samples.
conclusionsOur study provides novel insights into the values that underpin citizens' acceptance and discomfort with routine storage of NBS samples for research, and supports the need to develop well-designed methods of public education and civic discourse on the risks and benefits of the retention and secondary use of NBS samples.
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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.