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Cited by 12Ethics in Clinical ResearchEthics and bioethics in healthcareHealth, Environment, Cognitive Aging

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

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Cooke Bailey, Jessica N., Crawford, Dana C., Goldenberg, Aaron, Slaven, Anne, Pencak, Julie, Schachere, Marleen, Bush, William S., Sedor, John R. +1 more·2018·Journal of Personalized Medicine
DOI 10.3390/jpm8030021PMC PMC6164471
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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.

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  • Significantly fewer patients support the use of smartphone apps to track lifestyle, behavior or environmental influences.

    “Significantly fewer patients support the use of smartphone apps to track lifestyle, behavior or environmental influences [72, 76, 77].”

    From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [72]

    The Results report that 44.66% of surveyed chronic kidney disease patients were willing to install a phone app to track lifestyle, behaviors, and environmental exposures, compared with 71.29% willing to participate in a biorepository. The Discussion likewise describes about a 25-percentage-point gap. The paper does not report a statistical test establishing that this difference was significant; its significance tests concern responses stratified by race or sex. (LLM, conf=0.85)

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  • Among patients there is also a high readiness to participate in trials and donate data or biospecimens.

    “Among patients there is also a high readiness to participate in trials and donate data or biospecimens [62, 70, 72, 76, 77, 98, 99], but trust in professionals [98, 101], costs, receiving counseling about test results and privacy [101], as well as the donor’s religion and culture [98] seem to be important for the decision.”

    From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [72]

    The Results report that 71.29% of surveyed chronic kidney disease patients were willing to participate in a national biorepository, and the Abstract says respondents were willing to send biospecimens and share de-identified data. The study assessed willingness to join a hypothetical research cohort, not willingness to participate in clinical trials. (LLM, conf=0.84)

    Experimental — accuracy not yet measured

  • Several quantitative studies indicate that patients want to be fully informed about tests, the results and treatment options.

    “Several quantitative studies indicate that patients want to be fully informed about tests [71], the results [51, 71, 72, 78] and treatment options [29].”

    From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [72]

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Authors
Cooke Bailey, J. N., Crawford, D. C., Goldenberg, A., Slaven, A., Pencak, J., Schachere, M., Bush, W. S., Sedor, J. R., & O’Toole, J. F.
Affiliations
  • Department of Population and Quantitative Health Sciences, Case Western Reserve University, Cleveland, OH 44106, USA
  • Case Western Reserve University (US)
  • MetroHealth (US)
  • Cleveland Clinic (US)
ORCID
Venue
Journal of Personalized Medicine
Publisher
MDPI AG
Published
2018-06-26
Volume
8
Issue
3
Pages
21
ISSN
2075-4426 (ISSN-L)
DOI
10.3390/jpm8030021
PMC
PMC6164471
OpenAlex
W2810285686
Cited by
11
References
34
Citations by year
2026: 1 · 2024: 2 · 2023: 1 · 2021: 4 · 2020: 1 · 2019: 2
FWCI
1.67
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Personalized Medicine (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
National Institutes of Health (KL2TR000440, DK097836, DK108329, DK083912, DK100846, DK114908)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Physical Sciences › Environmental Science › Health, Toxicology and Mutagenesis › Health, Environment, Cognitive Aging
Keywords
chronic kidney disease, precision medicine, research participation, willingness to participate, biospecimen repository, return of research results, underrepresented groups, genetic research, mobile health apps, public hospital patients, race and ethnicity

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