title: Storage and use of Newborn Screening Blood Specimens for Research: Assessing Public Opinion in Illinois.
abstract: Storage and use of residual dried blood spots (DBS) from newborn screening (NBS) for research purposes has been a topic of elevated interest following high profile disputes between genetic privacy advocacy groups and state NBS programs. Our objective was to assess public opinion in Illinois regarding storage and use of residual DBS for research. Five hundred twenty-six Illinois residents completed a survey assessing attitudes about research uses for DBS, storage length, and consent issues. Over 80 % of respondents expressed agreement with questions regarding research uses of DBS. Eighty-three percent of respondents were in favor of storage for at least one year with 44 % favoring indefinite storage. Respondents with higher educational attainment were more likely to support research use of DBS and less likely to desire contact for each future study (P < 0.05). Black respondents were less likely than white respondents to express agreement for the use of DBS for research or to favor long-term storage (P < 0.05). Support was high for storage and use of DBS in our sample. Consent was important and respondents wanted choices about participation. Forty-two percent of respondents were not aware of NBS prior to this survey, highlighting a need for greater education about this public health program. Trust in the public health service of NBS must be protected through transparency in the policy process.
authors.affiliation: Fetal and Neonatal Medicine Center, Rush University Medical Center, 1725 W. Harrison St., Suite 308, Chicago, IL, 60612, USA, alexa_hart@rush.edu.
authors.forename: Alexa
authors.initials: A
authors.lastname: Hart
authors.forename: Michael
authors.initials: M
authors.lastname: Petros
authors.forename: Joel
authors.initials: J
authors.lastname: Charrow
authors.forename: Claudia
authors.initials: C
authors.lastname: Nash
authors.forename: Catherine
authors.initials: C
authors.lastname: Wicklund
mesh_terms: D000293:Adolescent; D000328:Adult; D001800:Blood Specimen Collection; D059788:Dried Blood Spot Testing; D005260:Female; D006801:Humans; D007087:Illinois; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D015997:Neonatal Screening; D011639:Public Opinion; D011795:Surveys and Questionnaires; D055815:Young Adult