Analysis of educational materials and destruction/opt-out initiatives for storage and use of residual newborn screening samples.
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.
Type
Journal articleSubject
AdultBiological Specimen Banks
Blood Specimen Collection
Disclosure
Humans
Infant, Newborn
Internet
Medical Waste Disposal
Neonatal Screening
Ownership
Parents
Patient Rights
Public Policy
Research
Third-Party Consent
Time Factors
United States
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https://hdl.handle.net/10161/3316Published Version (Please cite this version)
10.1089/gtmb.2010.0010Publication Info
Haga, Susanne B (2010). Analysis of educational materials and destruction/opt-out initiatives for storage
and use of residual newborn screening samples. Genet Test Mol Biomarkers, 14(5). pp. 587-592. 10.1089/gtmb.2010.0010. Retrieved from https://hdl.handle.net/10161/3316.This is constructed from limited available data and may be imprecise. To cite this
article, please review & use the official citation provided by the journal.
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Show full item recordScholars@Duke
Susanne B Haga
Professor in Medicine
My research interests focus on issues affecting the translation of genomics to clinical
practice. Specifically, I have a strong interest in education, with each of my research
projects involving some component of professional, public or patient education, including
development of educational materials about genomic research in general, pharmacogenetic
testing, and communicating genetic test results, in addition to undergraduate teaching
in genetics/genomics, ethics, and policy.A

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