Show simple item record Haga, SB
dc.coverage.spatial United States 2011-04-15T16:46:24Z 2010-10
dc.identifier.citation Genet Test Mol Biomarkers, 2010, 14 (5), pp. 587 - 592
dc.description.abstract In recent years, the storage and use of residual newborn screening (NBS) samples has gained attention. To inform ongoing policy discussions, this article provides an update of previous work on new policies, educational materials, and parental options regarding the storage and use of residual NBS samples. A review of state NBS Web sites was conducted for information related to the storage and use of residual NBS samples in January 2010. In addition, a review of current statutes and bills introduced between 2005 and 2009 regarding storage and/or use of residual NBS samples was conducted. Fourteen states currently provide information about the storage and/or use of residual NBS samples. Nine states provide parents the option to request destruction of the residual NBS sample after the required storage period or the option to exclude the sample for research uses. In the coming years, it is anticipated that more states will consider policies to address parental concerns about the storage and use of residual NBS samples. Development of new policies regarding storage and use of residual NBS samples will require careful consideration of impact on NBS programs, parent and provider educational materials, and respect for parents among other issues.
dc.format.extent 587 - 592
dc.language ENG
dc.language.iso en_US en_US
dc.relation.ispartof Genet Test Mol Biomarkers
dc.relation.isversionof 10.1089/gtmb.2010.0010
dc.subject Adult
dc.subject Biological Specimen Banks
dc.subject Blood Specimen Collection
dc.subject Disclosure
dc.subject Humans
dc.subject Infant, Newborn
dc.subject Internet
dc.subject Medical Waste Disposal
dc.subject Neonatal Screening
dc.subject Ownership
dc.subject Parents
dc.subject Patient Rights
dc.subject Public Policy
dc.subject Research
dc.subject Third-Party Consent
dc.subject Time Factors
dc.subject United States
dc.title Analysis of educational materials and destruction/opt-out initiatives for storage and use of residual newborn screening samples.
dc.type Journal Article
dc.description.version Version of Record en_US 2010-10-0 en_US
duke.description.endpage 592 en_US
duke.description.issue 5 en_US
duke.description.startpage 587 en_US
duke.description.volume 14 en_US
dc.relation.journal Genetic Testing and Molecular Biomarkers en_US
pubs.issue 5
pubs.organisational-group /Duke
pubs.organisational-group /Duke/Institutes and Provost's Academic Units
pubs.organisational-group /Duke/Institutes and Provost's Academic Units/Initiatives
pubs.organisational-group /Duke/Institutes and Provost's Academic Units/Initiatives/Duke Science & Society
pubs.organisational-group /Duke/Sanford School of Public Policy
pubs.organisational-group /Duke/Sanford School of Public Policy/Sanford School of Public Policy
pubs.organisational-group /Duke/School of Medicine
pubs.organisational-group /Duke/School of Medicine/Clinical Science Departments
pubs.organisational-group /Duke/School of Medicine/Clinical Science Departments/Medicine
pubs.organisational-group /Duke/School of Medicine/Clinical Science Departments/Medicine/Medicine, General Internal Medicine
pubs.publication-status Published
pubs.volume 14
dc.identifier.eissn 1945-0257

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