ArticlePediatrics2012
Public attitudes regarding the use of residual newborn screening specimens for research.
Article in Pediatrics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
40 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.PloS one · 2014Pooled it
- 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
- 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
- Actionability of commercial laboratory sequencing panels for newborn screening and the importance of transparency for parental decision-making.Genome medicine · 2021Article
- Early Check: translational science at the intersection of public health and newborn screening.BMC pediatrics · 2019Observational
- Parental perspectives on retention and secondary use of neonatal dried bloodspots: a Dutch mixed methods study.BMC pediatrics · 2019Article
- Including ELSI research questions in newborn screening pilot studies.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Facilitators and Barriers to Pre-Exposure Prophylaxis (PrEP) Use Among Black Individuals in the United States: Results from the National Survey on HIV in the Black Community (NSHBC).AIDS and behavior · 2018Article
- Transparency and choice in learning healthcare systems.Learning health systems · 2018Article
- Engaging a state: Facebook comments on a large population biobank.Journal of community genetics · 2017Article
- Ethical issues in pediatric genetic testing and screening.Current opinion in pediatrics · 2016Review
- If you build it, they will come: unintended future uses of organised health data collections.BMC medical ethics · 2016Review
- Lessons from HeLa Cells: The Ethics and Policy of Biospecimens.Annual review of genomics and human genetics · 2016Review
- Consenting postpartum women for use of routinely collected biospecimens and/or future biospecimen collection.Journal of community genetics · 2016Article
- Article
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.American journal of human genetics · 2015Review
- Storage and use of Newborn Screening Blood Specimens for Research: Assessing Public Opinion in Illinois.Journal of genetic counseling · 2015Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
BACKGROUND AND
objectivesMany state newborn screening (NBS) programs retain residual NBS bloodspots after the completion of screening. Potential uses for residual specimens include laboratory quality assurance, biomedical research, and, rarely, forensic applications. Our objective was to evaluate public opinion about the policies and practices relevant to the retention and use of residual bloodspots for biomedical research.
methodsA total of 3855 respondents were recruited using 3 methods: focus groups (n = 157), paper or telephone surveys (n = 1418), and a Knowledge Networks panel (n = 2280). Some participants (n = 1769) viewed a 22-minute movie about the retention and use of residual specimens while other participants were provided only written information about this practice. All participants were surveyed using a 38-item questionnaire.
resultsA diverse set of participants was recruited. Respondents were very supportive of NBS in general and accepting of the use of residual bloodspots for important research activities. Respondents were evenly divided on the acceptability of NBS without parental permission, but the majority of respondents supported the use of an "opt-in" process for parental permission for residual bloodspot retention and use. Viewing the educational movie was associated with greater support for bloodspot retention and use.
conclusionsOur results show that the general public surveyed here was supportive of NBS and residual sample retention and research use. However, there was a clear preference for an informed permission process for parents regarding these activities. Education about NBS was associated with a higher level of support and may be important to maintain public trust in these important programs.
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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.