Storage and use of Newborn Screening Blood Specimens for Research: Assessing Public Opinion in Illinois

Alexa Hart*, Michael Petros, Joel Charrow, Claudia Nash, Catherine A Wicklund

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)482-490
Number of pages9
JournalJournal of Genetic Counseling
Volume24
Issue number3
DOIs
StatePublished - Jun 18 2015

Keywords

  • Informed consent
  • Newborn screening
  • Public health policy
  • Research
  • Residual dried blood spots

ASJC Scopus subject areas

  • Genetics(clinical)

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