Committee report: Considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after ... View Full Text


Ontology type: schema:ScholarlyArticle      Open Access: True


Article Info

DATE

2011-07

AUTHORS

Bradford L. Therrell, W. Harry Hannon, Donald B. Bailey, Edward B. Goldman, Jana Monaco, Bent Norgaard-Pedersen, Sharon F. Terry, Alissa Johnson, R. Rodney Howell

ABSTRACT

Newborn screening programs are state based with variable policies. Guidance regarding the retention, storage, and use of portions of newborn screening dried blood spots that remain after screening (residual specimens) was first published in 1996. Since then, newborn screening programs have paid increased attention to specimen storage and usage issues. Standard residual specimen uses include quality assurance and program evaluation, treatment efficacy, test refinement, and result verification. In all cases, privacy and security are primary concerns. In general, two distinct state practices regarding the storage and use of residual newborn screening specimens exist: (1) short-term storage (<3 years), primarily for standard program uses and (2) long-term storage (>18 years), for standard program uses and possible important public health research uses. Recently, there have been concerns in some consumer communities regarding both the potential uses of residual specimens and patient (newborn and family) privacy. To assist in policy improvements that can protect the individual's privacy and allow for important public health uses of residual newborn screening specimens, the Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children has developed recommendations (with requested action by the Secretary where applicable). This report presents the Committee's recommendations and reviews the pertinent associated issues. More... »

PAGES

621-624

Identifiers

URI

http://scigraph.springernature.com/pub.10.1097/gim.0b013e3182147639

DOI

http://dx.doi.org/10.1097/gim.0b013e3182147639

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PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/21602691


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