Skip to main content
Duke University Libraries
DukeSpace Scholarship by Duke Authors
  • Login
  • Ask
  • Menu
  • Login
  • Ask a Librarian
  • Search & Find
  • Using the Library
  • Research Support
  • Course Support
  • Libraries
  • About
View Item 
  •   DukeSpace
  • Duke Scholarly Works
  • Scholarly Articles
  • View Item
  •   DukeSpace
  • Duke Scholarly Works
  • Scholarly Articles
  • View Item
JavaScript is disabled for your browser. Some features of this site may not work without it.

Analysis of educational materials and destruction/opt-out initiatives for storage and use of residual newborn screening samples.

Thumbnail
View / Download
118.5 Kb
Date
2010-10
Author
Haga, Susanne B
Repository Usage Stats
253
views
416
downloads
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 article
Subject
Adult
Biological 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
Permalink
https://hdl.handle.net/10161/3316
Published Version (Please cite this version)
10.1089/gtmb.2010.0010
Publication 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.
Collections
  • Scholarly Articles
More Info
Show full item record

Scholars@Duke

Haga

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
Open Access

Articles written by Duke faculty are made available through the campus open access policy. For more information see: Duke Open Access Policy

Rights for Collection: Scholarly Articles


Works are deposited here by their authors, and represent their research and opinions, not that of Duke University. Some materials and descriptions may include offensive content. More info

Make Your Work Available Here

How to Deposit

Browse

All of DukeSpaceCommunities & CollectionsAuthorsTitlesTypesBy Issue DateDepartmentsAffiliations of Duke Author(s)SubjectsBy Submit DateThis CollectionAuthorsTitlesTypesBy Issue DateDepartmentsAffiliations of Duke Author(s)SubjectsBy Submit Date

My Account

LoginRegister

Statistics

View Usage Statistics
Duke University Libraries

Contact Us

411 Chapel Drive
Durham, NC 27708
(919) 660-5870
Perkins Library Service Desk

Digital Repositories at Duke

  • Report a problem with the repositories
  • About digital repositories at Duke
  • Accessibility Policy
  • Deaccession and DMCA Takedown Policy

TwitterFacebookYouTubeFlickrInstagramBlogs

Sign Up for Our Newsletter
  • Re-use & Attribution / Privacy
  • Harmful Language Statement
  • Support the Libraries
Duke University