Public Health Reports · 2013 · 18 citations · 9 references
MedicineCommunity HealthHealth SciencesHealth Services ResearchNeonatologyPediatric CareBiobanking EthicsBiobanking RegulationNewborn Genetic ScreeningBiobanking ConsentBiobanking OversightBiomedical ApplicationsBiomedical Research EthicsNeonatal ScreeningNewborn ScreeningNewborn Screening For Genetic DisordersPopulation Health Impact
In June 2009, the Michigan Department of Community Health launched the Michigan BioTrust for Health to improve preservation and utility of residual dried blood spots from newborn screening (NBS) for biomedical research while maintaining public support and integrity of NBS. In this article, we chronicle implementation of the BioTrust and document its impact on NBS. Overall, the percentage of new parents who consent to possible future research use of their children's dried blood spots through the BioTrust has remained consistent with previous public opinion surveys. No significant increase in refusal of NBS has been observed despite increased publicity. There was, however, a slight increase in requests to destroy samples following completion of NBS, indicating readily accessible opt-out information. Given adequate training and cooperation of birthing hospital staff, as well as outreach education for parents and health-care providers, we conclude it is possible to implement a biobanking initiative without adversely impacting NBS.
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State Laws Regarding the Retention and Use of Residual Newborn Screening Blood Samples
Michelle Lewis, Aaron J. Goldenberg, Rebecca Anderson et al. · PEDIATRICS · 2011 · 90 citations · Full text
Medicine, Health Law, Pediatrics +14
Public Attitudes Regarding the Use of Residual Newborn Screening Specimens for Research
Jeffrey R. Botkin, Erin Rothwell, Rebecca Anderson et al. · PEDIATRICS · 2012 · 69 citations · Full text
Bradford L. Therrell, W. Harry Hannon, Donald B. Bailey et al. · Genetics in Medicine · 2011 · 69 citations · Full text
Medicine, Child Health, Pediatrics +12