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

  • Original Research
  • Published:
Journal of Genetic Counseling

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.

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Acknowledgments

The authors gratefully acknowledge the following clinics for their assistance in conducting this study: Northwestern Memorial Faculty Foundation Obstetrics and Gynecology, East Side Health District, Jackson County Health Department, Jefferson County Health Department, Marion County Health Department, McLean County Health Department, Montgomery County Health Department, Rock Island County Health Department, and Southern Seven Health Department. The authors gratefully acknowledge the following Pediatric Practice Research Group practices for their participation in this study: North Suburban Pediatrics in Evanston, IL, Pediatric Specialists of the Northwest in Crystal Lake, IL, and Streeterville Pediatrics in Chicago, IL. We thank Dr. Barbara Bayldon, Dr. Helen Binns, and Dr. Adolfo Ariza for their thoughtful review and comments during survey development.

Conflict of Interest

Authors Alexa Hart, Michael Petros, Joel Charrow, Claudia Nash, and Catherine Wicklund each declare that they have no conflict of interest.

Informed Consent Statement

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

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Authors and Affiliations

  1. Fetal and Neonatal Medicine Center, Rush University Medical Center, 1725 W. Harrison St., Suite 308, Chicago, IL, 60612, USA

    Alexa Hart

  2. School of Public Health, University of Illinois at Chicago, Chicago, IL, USA

    Michael Petros

  3. Division of Genetics, Birth Defects and Metabolism, Ann and Robert H. Lurie Children’s Hospital, Chicago, IL, USA

    Joel Charrow

  4. Illinois Department of Public Health, Springfield, IL, USA

    Claudia Nash

  5. Center for Genetic Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    Catherine Wicklund

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  1. Alexa Hart
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  2. Michael Petros
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  3. Joel Charrow
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  4. Claudia Nash
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  5. Catherine Wicklund
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Corresponding author

Correspondence to Alexa Hart.

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Hart, A., Petros, M., Charrow, J. et al. Storage and use of Newborn Screening Blood Specimens for Research: Assessing Public Opinion in Illinois. J Genet Counsel 24, 482–490 (2015). https://doi.org/10.1007/s10897-014-9788-2

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  • DOI: https://doi.org/10.1007/s10897-014-9788-2

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