domingo, 2 de diciembre de 2018

Consent for Genetic Biobanking in a Diverse Multisite CKD Cohort. - PubMed - NCBI

2018 Jun 12;3(6):1267-1275. doi: 10.1016/j.ekir.2018.06.002. eCollection 2018 Nov.

Consent for Genetic Biobanking in a Diverse Multisite CKD Cohort.

Troost JP1, Hawkins J2, Jenkins DR1, Gipson DS1, Kretzler M2, El Shamy O3, Bellovich K4, Perumal K5, Bhat Z6, Massengill S7, Steigerwalt S8, Pennathur S2, Brosius FC9, Gadegbeku CA10; Michigan O’Brien Kidney Translational Research Center.

Author information

Abstract

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.