ArticleAmerican journal of public health2011
Concerns of newborn blood screening advisory committee members regarding storage and use of residual newborn screening blood spots.
Article in American journal of public health, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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The trial behind it
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Who cites it
17 citing papers in PubMed.
- The Influence of Education on Public Trust and Consent Preferences With Residual Newborn Screening Dried Blood spots.Journal of empirical research on human research ethics : JERHRE · 2016Trial
- 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
- Content of First Prenatal Visits.Maternal and child health journal · 2018Article
- Genomic newborn screening: public health policy considerations and recommendations.BMC medical genomics · 2017Article
- 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
- 'Cool! and creepy': engaging with college student stakeholders in Michigan's biobank.Journal of community genetics · 2014Article
- Public attitudes regarding the use of electronic health information and residual clinical tissues for research.Journal of community genetics · 2014Article
- Analysis of motivations that lead women to participate (or not) in a newborn cohort study.BMC pediatrics · 2013Article
- Public attitudes regarding a pilot study of newborn screening for spinal muscular atrophy.American journal of medical genetics. Part A · 2013Article
- Retention and research use of residual newborn screening bloodspots.Pediatrics · 2013Review
- Lessons that newborn screening in the USA can teach us about biobanking and large-scale genetic studies.Personalized medicine · 2013Article
- Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.Social science & medicine (1982) · 2012Article
- Public attitudes regarding the use of residual newborn screening specimens for research.Pediatrics · 2012Article
- State laws regarding the retention and use of residual newborn screening blood samples.Pediatrics · 2011Article
- Newborn Screening Knowledge and Attitudes Among Midwives and Out-of-Hospital-Birth Parents.The Journal of perinatal & neonatal nursingArticle
- From newborn screening to population health research: implementation of the Michigan BioTrust for health.Public health reports (Washington, D.C. : 1974)Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
objectivesWe assessed attitudes and opinions of members of newborn blood screening (NBS) advisory committees regarding the storage and secondary research use of residual specimens from NBS.
methodsWe conducted focus groups in 2008 and 2009 with NBS advisory committees (4 focus groups; n = 39 participants) in the Mountain States region (i.e., AZ, CO, MT, NM, NV, TX, UT, and WY).
resultsParticipants identified several challenges to implementing policies for storage of and research on residual newborn blood specimens. Themes that emerged from the data were public health relevancy; improvement of parental knowledge; impact of enhanced parental involvement; concerns over ownership, privacy, and confidentiality; identification of secondary research uses; and role of advisory committees.
conclusionsParticipants indicated that secondary uses of residual specimens entailed opportunities for improvements in NBS programs but also carried significant risks for their programs. Addressing concerns from stakeholders will be necessary for state-level adoption of national recommendations.
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Registered trials
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