A Comparative Analysis of the Governance and Use of Residual Dried Blood Spots from State Newborn Screening Programs and Neonatal Biobanks

In contrast to prior research, which has focused mainly on legislative content, this study aimed to characterize the current governance structures and procedures used by state newborn screening programs in the United States regarding the research use of residual dried blood spots. Content analysis w...

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Bibliographic Details
Published in:Journal of empirical research on human research ethics 2013-07, Vol.8 (3), p.22-33
Main Authors: Preslan, Elicia D., H. Mathews, Debra J.
Format: Article
Language:English
Subjects:
Bioethics
Biological specimen banks
Biological Specimen Banks - ethics
Biological Specimen Banks - legislation & jurisprudence
Blood
Blood tests
Comparative analysis
Confidentiality
Content analysis
Data Collection
Ethics, Research
Gene banks
Genetic screening
Governance
Government Regulation
Health Policy - legislation & jurisprudence
Humans
Infant, Newborn
Institutional review boards
Internet
Medical research
Medical screening
Neonatal screening
Neonatal Screening - ethics
Neonatal Screening - legislation & jurisprudence
Newborn babies
Newborns
Obtaining Adequately Informed Consent in Diverse Contexts
Research data sources
Research facilities
United States
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Summary:In contrast to prior research, which has focused mainly on legislative content, this study aimed to characterize the current governance structures and procedures used by state newborn screening programs in the United States regarding the research use of residual dried blood spots. Content analysis was performed on newborn screening laws, program policies, survey responses, and online material, and was compared to information from two neonatal biobanks. Important differences between newborn screening programs and neonatal biobanks included the types of permissible research with blood spots, the evaluation criteria used for research requests, and characteristics of the research proposal reviewers. These findings can inform ongoing policy conversations with respect to the governance and use of residual dried blood spots.
ISSN:1556-2646
1556-2654
DOI:10.1525/jer.2013.8.3.22