Analysis of educational materials and destruction/opt-out initiatives for storage and use of residual newborn screening samples.
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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.
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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.
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Susanne B Haga
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.
Areas of expertise: Bioethics and Health Behavior
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