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 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.
Virginia Commonwealth University, Richmond, VA 23298, USA. Elicia.Preslan@gmail.com
Elicia D
ED
Preslan
Debra J H
DJ
Mathews
D018070:Biological Specimen Banks / Q000941:ethics / Q000331:legislation & jurisprudence*; D003219:Confidentiality; D003625:Data Collection; D032984:Ethics, Research; D033161:Government Regulation; D006291:Health Policy / Q000331:legislation & jurisprudence*; D006801:Humans; D007231:Infant, Newborn; D020407:Internet; D015997:Neonatal Screening / Q000941:ethics / Q000331:legislation & jurisprudence*; D014481:United States