caa a22 4500 605544522 CHVBK 20210128100931.0 cr unu---uuuuu 210128e20150601xx s 000 0 eng 10.1007/s10897-014-9788-2 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9788-2 Storage and use of Newborn Screening Blood Specimens for Research: Assessing Public Opinion in Illinois [Elektronische Daten] [Alexa Hart, Michael Petros, Joel Charrow, Claudia Nash, Catherine Wicklund] 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 oneyear 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. National Society of Genetic Counselors, Inc., 2014 Newborn screening nationallicence Residual dried blood spots nationallicence Public health policy nationallicence Research nationallicence Informed consent nationallicence Hart Alexa Fetal and Neonatal Medicine Center, Rush University Medical Center, 1725 W. Harrison St., Suite 308, 60612, Chicago, IL, USA aut Petros Michael School of Public Health, University of Illinois at Chicago, Chicago, IL, USA aut Charrow Joel Division of Genetics, Birth Defects and Metabolism, Ann and Robert H. Lurie Children's Hospital, Chicago, IL, USA aut Nash Claudia Illinois Department of Public Health, Springfield, IL, USA aut Wicklund Catherine Center for Genetic Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 482-490 1059-7700 24:3<482 2015 24 10897 https://doi.org/10.1007/s10897-014-9788-2 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9788-2 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Hart Alexa Fetal and Neonatal Medicine Center, Rush University Medical Center, 1725 W. Harrison St., Suite 308, 60612, Chicago, IL, USA aut NATIONALLICENCE 700 1- Petros Michael School of Public Health, University of Illinois at Chicago, Chicago, IL, USA aut NATIONALLICENCE 700 1- Charrow Joel Division of Genetics, Birth Defects and Metabolism, Ann and Robert H. Lurie Children's Hospital, Chicago, IL, USA aut NATIONALLICENCE 700 1- Nash Claudia Illinois Department of Public Health, Springfield, IL, USA aut NATIONALLICENCE 700 1- Wicklund Catherine Center for Genetic Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 482-490 1059-7700 24:3<482 2015 24 10897