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J Pers Med. 2018 Jun 26;8(3). pii: E21. doi: 10.3390/jpm8030021.

Willingness to Participate in a National Precision Medicine Cohort: Attitudes of Chronic Kidney Disease Patients at a Cleveland Public Hospital.

Author information

1
Department of Population and Quantitative Health Sciences, Case Western Reserve University, Cleveland, OH 44106, USA. jnc43@case.edu.
2
Institute for Computational Biology, Case Western Reserve University, Cleveland, OH 44106, USA. jnc43@case.edu.
3
Department of Population and Quantitative Health Sciences, Case Western Reserve University, Cleveland, OH 44106, USA. dana.crawford@case.edu.
4
Institute for Computational Biology, Case Western Reserve University, Cleveland, OH 44106, USA. dana.crawford@case.edu.
5
Institute for Computational Biology, Case Western Reserve University, Cleveland, OH 44106, USA. ajg10@case.edu.
6
Department of Bioethics, Case Western Reserve University, Cleveland, OH 44106, USA. ajg10@case.edu.
7
Division of Nephrology, Department of Medicine, MetroHealth Medical Center, Cleveland, OH 44109, USA. aslaven@metrohealth.org.
8
Division of Nephrology, Department of Medicine, MetroHealth Medical Center, Cleveland, OH 44109, USA. jpencak@metrohealth.org.
9
Division of Nephrology, Department of Medicine, MetroHealth Medical Center, Cleveland, OH 44109, USA. mschachere@metrohealth.org.
10
Department of Population and Quantitative Health Sciences, Case Western Reserve University, Cleveland, OH 44106, USA. wsb36@case.edu.
11
Institute for Computational Biology, Case Western Reserve University, Cleveland, OH 44106, USA. wsb36@case.edu.
12
Department of Medicine, Case Western Reserve University, Cleveland, OH 44106, USA. jrs4@case.edu.
13
Department of Physiology and Biophysics, Case Western Reserve University, Cleveland, OH 44106, USA. jrs4@case.edu.
14
Glickman Urological and Kidney Institute, Cleveland Clinic, Cleveland, OH 44195, USA. jrs4@case.edu.
15
Department of Medicine, Case Western Reserve University, Cleveland, OH 44106, USA. jxo69@case.edu.
16
Glickman Urological and Kidney Institute, Cleveland Clinic, Cleveland, OH 44195, USA. jxo69@case.edu.

Abstract

Multiple ongoing, government-funded national efforts longitudinally collect health data and biospecimens for precision medicine research with ascertainment strategies increasingly emphasizing underrepresented groups in biomedical research. We surveyed chronic kidney disease patients from an academic, public integrated tertiary care system in Cleveland, Ohio, to examine local attitudes toward participation in large-scale government-funded studies. Responses (n = 103) indicate the majority (71%) would participate in a hypothetical national precision medicine cohort and were willing to send biospecimens to a national repository and share de-identified data, but <50% of respondents were willing to install a phone app to track personal data. The majority of participants (62%) indicated that return of research results was very important, and the majority (54%) also wanted all of their research-collected health and genetic data returned. Response patterns did not differ by race/ethnicity. Overall, we found high willingness to participate among this Cleveland patient population already participating in a local genetic study. These data suggest that despite common perceptions, subjects from communities traditionally underrepresented in genetic research will participate and agree to store samples and health data in repositories. Furthermore, most participants want return of research results, which will require a plan to provide these data in a secure, accessible, and understandable manner.

KEYWORDS:

biorepository; precision medicine; research participation; return of research results

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