TY - JOUR
T1 - Consent for Genetic Biobanking in a Diverse Multisite CKD Cohort
AU - Michigan O'Brien Kidney Translational Research Center
AU - Troost, Jonathan P.
AU - Hawkins, Jennifer
AU - Jenkins, Daniel R.
AU - Gipson, Debbie S.
AU - Kretzler, Matthias
AU - El Shamy, Osama
AU - Bellovich, Keith
AU - Perumal, Kalyani
AU - Bhat, Zeenat
AU - Massengill, Susan
AU - Steigerwalt, Susan
AU - Pennathur, Subramaniam
AU - Brosius, Frank C.
AU - Gadegbeku, Crystal A.
N1 - Funding Information:
This study was supported, in part, by The George M. O’Brien Michigan Kidney Translational Core Center (NIH/NIDDK: P30-DK081943-01), and the University of Michigan School of Medicine, Department of Internal Medicine, and Department of Pediatrics & Communicable Diseases. We would like to thank the patients and families who graciously participated in this research.
Funding Information:
This study was supported, in part, by The George M. O'Brien Michigan Kidney Translational Core Center (NIH/NIDDK: P30-DK081943-01), and the University of Michigan School of Medicine, Department of Internal Medicine, and Department of Pediatrics & Communicable Diseases. We would like to thank the patients and families who graciously participated in this research.
Publisher Copyright:
© 2018 International Society of Nephrology
PY - 2018/11
Y1 - 2018/11
N2 - Introduction: The goal of this study was to examine patterns in the likelihood of consent to genetic research among participants in a prospective kidney disease cohort and biobank, and to determine demographic, clinical, and socioeconomic factors linked to consent for ongoing and future genetic research. Methods: The Clinical Phenotyping Resource and Biobank Core (C-PROBE) enrolled 1628 adult and pediatric patients with chronic kidney disease from 2009 to 2017 across 7 sites in the United States. Participants were asked at annual study visits for consent to provide DNA samples for future genetic studies. We compared characteristics of participants by initial consent outcome and consent status at their most recent study visit. Results: Of the C-PROBE participants, 96% consented to genetic studies at their initial study visit. Although African Americans were slightly less likely to consent at baseline (93% vs. 97%, odds ratio = 0.3, P < 0.02), there were no significant racial or ethnic differences with longitudinal participation. Also, pediatric and adult genetic consent rates were equivalent. The major persistent differences in the likelihood of consent were based on enrollment site, which ranged from 85% to 100% (P < 0.0001). Conclusion: Overall, genetic consent rates for kidney research within the C-PROBE cohort were high. However, differences in consent rates over time and by recruitment site highlight the complexity of genetic consent for biobanking, and potential limitations for generalizability of observations.
AB - Introduction: The goal of this study was to examine patterns in the likelihood of consent to genetic research among participants in a prospective kidney disease cohort and biobank, and to determine demographic, clinical, and socioeconomic factors linked to consent for ongoing and future genetic research. Methods: The Clinical Phenotyping Resource and Biobank Core (C-PROBE) enrolled 1628 adult and pediatric patients with chronic kidney disease from 2009 to 2017 across 7 sites in the United States. Participants were asked at annual study visits for consent to provide DNA samples for future genetic studies. We compared characteristics of participants by initial consent outcome and consent status at their most recent study visit. Results: Of the C-PROBE participants, 96% consented to genetic studies at their initial study visit. Although African Americans were slightly less likely to consent at baseline (93% vs. 97%, odds ratio = 0.3, P < 0.02), there were no significant racial or ethnic differences with longitudinal participation. Also, pediatric and adult genetic consent rates were equivalent. The major persistent differences in the likelihood of consent were based on enrollment site, which ranged from 85% to 100% (P < 0.0001). Conclusion: Overall, genetic consent rates for kidney research within the C-PROBE cohort were high. However, differences in consent rates over time and by recruitment site highlight the complexity of genetic consent for biobanking, and potential limitations for generalizability of observations.
KW - CKD
KW - DNA storage
KW - biorepository
KW - genetic research
KW - informed consent
KW - minorities
KW - translational research
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U2 - 10.1016/j.ekir.2018.06.002
DO - 10.1016/j.ekir.2018.06.002
M3 - Article
AN - SCOPUS:85050998859
VL - 3
SP - 1267
EP - 1275
JO - Kidney International Reports
JF - Kidney International Reports
SN - 2468-0249
IS - 6
ER -