ArticlePediatrics2011
State laws regarding the retention and use of residual newborn screening blood samples.
Article in Pediatrics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 43 papers.
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
43 citing papers in PubMed.
- Comparison of Video, App, and Standard Consent Processes on Decision-Making for Biospecimen Research: A Randomized Controlled Trial.Journal of empirical research on human research ethics : JERHRE · 2020Trial
- Prenatal Education of Parents About Newborn Screening and Residual Dried Blood Spots: A Randomized Clinical Trial.JAMA pediatrics · 2016Trial
- Genomic newborn screening: data retention for research and clinical reuse.European journal of human genetics : EJHG · 2026Article
- Navigating ethical, legal and social implications in genomic newborn screening.Nature reviews. Genetics · 2026Article
- Public attitudes toward the research use and storage of residual dried blood spots from newborn screening in China.BMC medical ethics · 2025Article
- Use of Online Newborn Screening Educational Resources for the Education of Expectant Parents: An Improvement in Equity.International journal of neonatal screening · 2022Article
- When Not to Ask: A Defense of Choice-Masking Nudges in Medical Research.Journal of health care law & policy · 2022Article
- Secondary Data Usage in Direct-to-Consumer Genetic Testing: To What Extent Are Customers Aware and Concerned?Public health genomics · 2021Article
- Local deliberative approach to the bioethical controversies: An opportunity for the proper implementation of neonatal screeningBiomedica : revista del Instituto Nacional de Salud · 2020Article
- Neonatal Lead (Pb) Exposure and DNA Methylation Profiles in Dried Bloodspots.International journal of environmental research and public health · 2020Article
- Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- A pediatric perspective on genomics and prevention in the twenty-first century.Pediatric research · 2020Review
- Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.The Hastings Center report · 2018Article
- 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
- Screening of Newborns for Disorders with High Benefit-Risk Ratios Should Be Mandatory.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2016Article
- Eliciting parental support for the use of newborn blood spots for pediatric research.BMC medical research methodology · 2016Article
- Congenital Hypothyroidism Long-Term Follow-up Project: Navigating the Rough Waters of a Multi-Center, Multi-State Public Health Project.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
- 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
5 authors.
Funding
Abstract
backgroundAfter newborn screening has been completed, many states retain residual newborn screening dried blood samples for various purposes, including program evaluation, quality assurance, and biomedical research. The extent to which states possess legal authority to retain residual dried blood samples (DBS) and use them for purposes unrelated to newborn screening is unclear.
objectiveThe purpose of this study was to evaluate state laws regarding the retention and use of DBS.
methodsState statutes and regulations related to newborn screening of all 50 states plus the District of Columbia were accessed online between November 2008 and December 2009 and reviewed by 2 independent reviewers to determine the extent to which the retention and use of DBS were addressed.
resultsThe retention or use of DBS has not been addressed in 18 states. In 4 states, DBS becomes state property. Eight states require that parents be provided information regarding the retention of DBS. Parents in 5 states may request the destruction of their child's residual sample. Parental consent is required under certain circumstances to release DBS for research in 6 states. One state prohibits DBS from being used for research purposes.
conclusionsStates have wide variability in their policies regarding the retention and use of DBS. Many states have not addressed key issues, and some states that retain DBS may be acting outside the scope of their legal authority. The lack of transparency on the part of states in retaining DBS may undermine public trust in state newborn screening programs and the research enterprise.
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