title: Analysis of educational materials and destruction/opt-out initiatives for storage and use of residual newborn screening samples.
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.
authors.affiliation: Institute for Genome Sciences and Policy, Sanford School of Public Policy, Duke University, Durham, North Carolina 27708, USA. susanne.haga@duke.edu
authors.forename: Susanne B
authors.initials: SB
authors.lastname: Haga
mesh_terms: D000328:Adult; D018070:Biological Specimen Banks / Q000941:ethics / Q000331:legislation & jurisprudence; D001800:Blood Specimen Collection / Q000941:ethics; D030881:Disclosure / Q000331:legislation & jurisprudence; D006801:Humans; D007231:Infant, Newborn; D020407:Internet; D017744:Medical Waste Disposal / Q000331:legislation & jurisprudence / Q000379:methods*; D015997:Neonatal Screening; D010067:Ownership; D010290:Parents / Q000523:psychology; D028701:Patient Rights / Q000331:legislation & jurisprudence*; D011640:Public Policy; D012106:Research / Q000331:legislation & jurisprudence*; D020458:Third-Party Consent; D013997:Time Factors; D014481:United States
chemical_list: D017744:Medical Waste Disposal