ArticleAmerican journal of medical genetics. Part A2014
What parents want to know about the storage and use of residual newborn bloodspots.
Article in American journal of medical genetics. Part A, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02676245 (Parent Education and Choice About Newborn Screening and Bloodspot Retention), which is not on this map. Cited by 10 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.
Parent Education and Choice About Newborn Screening and Bloodspot Retention
Who cites it
10 citing papers in PubMed, 14 citations in OpenAlex.
- Prenatal Education of Parents About Newborn Screening and Residual Dried Blood Spots: A Randomized Clinical Trial.JAMA pediatrics · 2016Trial
- "Using dried blood spots beyond newborn screening - is Hong Kong ready?": navigating the intersection of innovation readiness, privacy concerns, and Chinese parenting culture.BMC public health · 2024Article
- 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
- Newborn dried blood spot samples in Denmark: the hidden figures of secondary use and research participation.European journal of human genetics : EJHG · 2019Article
- Education for fathers about newborn screening and leftover dried blood spots.Journal of community genetics · 2017Article
- Engaging a state: Facebook comments on a large population biobank.Journal of community genetics · 2017Article
- Deliberative Discussion Focus Groups.Qualitative health research · 2016Article
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.American journal of human genetics · 2015Review
- Public attitudes regarding the use of electronic health information and residual clinical tissues for research.Journal of community genetics · 2015Article
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 at 5 institutions in 1 country.
Funding
Abstract
Many state newborn screening programs retain residual newborn screening bloodspots for a variety of purposes including quality assurance, biomedical research, and forensic applications. This project was designed to determine the information that prospective parents want to know about this practice. Eleven focus groups were conducted in four states. Pregnant women and their partners and parents of young children (N = 128) were recruited from the general public. Focus group participants viewed two educational movies on newborn screening and DBS retention and use. Transcripts were analyzed with qualitative methods and the results were synthesized to identify key information items. We identified 14 categories of information from the focus groups that were synthesized into seven items prospective parents want to know about residual DBS. The items included details about storage, potential uses, risks and burdens, safeguards, anonymity, return of results, and parental choice. For those state programs that retain residual dried bloodspots, inclusion of the seven things parents want to know about residual dried bloodspots in educational materials may improve parental understanding, trust, and acceptance of the retention and use of stored bloodspots.
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.