ArticleSocial science & medicine (1982)2012
Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.
Article in Social science & medicine (1982), 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 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
27 citing papers in PubMed, 1 synthesis or guideline pooled it.
- 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
- 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
- Parental perspectives on retention and secondary use of neonatal dried bloodspots: a Dutch mixed methods study.BMC pediatrics · 2019Article
- Content of First Prenatal Visits.Maternal and child health journal · 2018Article
- An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots.Journal of empirical research on human research ethics : JERHRE · 2017Article
- Experiences among Women with Positive Prenatal Expanded Carrier Screening Results.Journal of genetic counseling · 2017Article
- Engaging a state: Facebook comments on a large population biobank.Journal of community genetics · 2017Article
- A critique of the regulation of data science in healthcare research in the European Union.BMC medical ethics · 2017Article
- Facebook Advertising Across an Engagement Spectrum: A Case Example for Public Health Communication.JMIR public health and surveillance · 2016Article
- Deliberative Discussion Focus Groups.Qualitative health research · 2016Article
- 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
- Testing an online, dynamic consent portal for large population biobank research.Public health genomics · 2015Article
- What parents want to know about the storage and use of residual newborn bloodspots.American journal of medical genetics. Part A · 2014Article
- Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health.Journal of community genetics · 2014Article
- Public preferences regarding informed consent models for participation in population-based genomic research.Genetics in medicine : official journal of the American College of Medical Genetics · 2014Article
- Public attitudes regarding a pilot study of newborn screening for spinal muscular atrophy.American journal of medical genetics. Part A · 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
8 authors.
Funding
Abstract
This paper discusses attitudes and opinions of a diverse group of participants toward the retention and use of residual newborn blood samples for research. Data were drawn from focus groups based in six states in the USA, and results provide support for the retention and use of residual newborn blood samples for research when parental permission is asked beforehand. However, there were a number of concerns that also warrant attention for the development of policy and maintaining trust with the public, such as timing of permission, use of samples already stored, level of personal control of sample use and education. The results demonstrate the complexity of the topic and the ethical ambiguities associated with the retention and use of residual newborn blood samples.
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.