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Kidney Week

Abstract: SA-PO627

Attitudes towards Biosample Collection and Genetic Testing in a Racially Diverse CKD Population in Cleveland, OH

Session Information

Category: Genetic Diseases of the Kidney

  • 803 Genetic Epidemiology and Other Genetic Studies of Common Kidney Diseases


  • Cooke Bailey, Jessica N, Case Western Reserve University , Cleveland, Ohio, United States
  • Crawford, Dana C, Case Western Reserve University, Cleveland, Ohio, United States
  • Pencak, Julie A, MetroHealth Medical Center, Cleveland, Ohio, United States
  • Schachere, Marleen, Case Western Reserve University, Cleveland, Ohio, United States
  • Bush, William S, Case Western Reserve University, Cleveland, Ohio, United States
  • Sedor, John R., MetroHealth Medical Center, Cleveland, Ohio, United States
  • O'Toole, John F., Case Western Reserve University, Cleveland, Ohio, United States

The NIH All of Us Research Program (AURP) is an ambitious national effort to longitudinally collect health data and biospecimens from a million Americans for storage, processing, and analysis in a government-funded data repository. Previous studies have suggested minority populations would be reluctant to share personal data and samples with the Federal government. We tested this premise in a population of chronic kidney disease (CKD) patients in Cleveland, OH.


Patients in a CKD clinic were approached prior to standard of care visit, asked to complete a structured 5 question bioethics and IRB-approved survey, and to provide blood sample for future genetic analysis.


Most (86%) participants in the genetic study took the survey; 50% African American, 54% female, average age 61.5. Responses from 111 individuals indicate the majority would participate in the AURP and were willing to send biosamples to a national repository and share de-identified data, but <50% of respondents were willing to install a phone app to track personal data. Most wanted results returned and 96% of those who did wanted personal (health or genetic) data returned; 41% wanted at least summary data about the PMI-CP cohort, 4% only summary data about the overall group, 76% at least personal health data, and 4% only personal health data. Genetic data was priority; 89% wanted at least personal genetic data while 19% wanted only personal genetic data. 10% did not want any results returned. We found no significant difference between responses when comparing African American and White individuals.


Attitudes of CKD patients in a diverse health care environment towards the AURP are varied but, in contrast to published data, did not differ across self-reported race (African Americans and Whites) in this sample. Willingness to participate in some aspect of a AURP-like project was high. Of those agreeing to the survey, almost all wanted return of genetic results. Given this demand, efficient processes should be developed to provide subjects with appropriate education and context for results return. Other chronic disease populations and healthy subjects need to be studied to determine if health status, race or ethnicity modifies willingness to join the AURP.