A paradigm for understanding trust and mistrust in medical research: The Community VOICES study

M. Smirnoff, I. Wilets, Deborah Ragin, R. Adams, J. Holohan, R. Rhodes, G. Winkel, E. M. Ricci, C. Clesca, L. D. Richardson

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

Background: To promote justice in research practice and rectify health disparities, greater diversity in research participation is needed. Lack of trust in medical research is one of the most significant obstacles to research participation. Multiple variables have been identified as factors associated with research participant trust/mistrust. A conceptual model that provides meaningful insight into the interplay of factors impacting trust may promote more ethical research practice and provide an enhanced, actionable understanding of participant mistrust. Methods: A structured survey was developed to capture attitudes toward research conducted in emergency situations; this article focuses on items designed to assess respondents' level of trust or mistrust in medical research in general. Community-based interviews were conducted in English or Spanish with 355 New York City residents (white 42%, African American 29%, Latino 22%). Results: Generally favorable attitudes toward research were expressed by a majority (85.3%), but many respondents expressed mistrust. Factor analysis yielded four specific domains of trust/mistrust, each of which was associated with different demographic variables: general trustworthiness (older age, not disabled); perceptions of discrimination (African American, Latino, Spanish language preference); perceptions of deception (prior research experience, African American); and perceptions of exploitation (less education). Conclusions: The four domains identified in the analysis provide a framework for understanding specific areas of research trust/mistrust among disparate study populations. This model offers a conceptual basis for the design of tailored interventions that target specific groups to promote trust of individual researchers and research institutions as well as to facilitate broader research participation.

Original languageEnglish
Pages (from-to)39-47
Number of pages9
JournalAJOB Empirical Bioethics
Volume9
Issue number1
DOIs
StatePublished - 2 Jan 2018

Fingerprint

community research
medical research
Biomedical Research
paradigm
Research
African Americans
research practice
participation
Hispanic Americans
Medical Research
Paradigm
Participation
Spanish language
trustworthiness
Social Justice
Research Practice
Latinos
exploitation
Deception
factor analysis

Keywords

  • disability
  • ethnicity
  • limited English proficiency
  • race
  • research mistrust
  • research trust

Cite this

Smirnoff, M. ; Wilets, I. ; Ragin, Deborah ; Adams, R. ; Holohan, J. ; Rhodes, R. ; Winkel, G. ; Ricci, E. M. ; Clesca, C. ; Richardson, L. D. / A paradigm for understanding trust and mistrust in medical research : The Community VOICES study. In: AJOB Empirical Bioethics. 2018 ; Vol. 9, No. 1. pp. 39-47.
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Smirnoff, M, Wilets, I, Ragin, D, Adams, R, Holohan, J, Rhodes, R, Winkel, G, Ricci, EM, Clesca, C & Richardson, LD 2018, 'A paradigm for understanding trust and mistrust in medical research: The Community VOICES study', AJOB Empirical Bioethics, vol. 9, no. 1, pp. 39-47. https://doi.org/10.1080/23294515.2018.1432718

A paradigm for understanding trust and mistrust in medical research : The Community VOICES study. / Smirnoff, M.; Wilets, I.; Ragin, Deborah; Adams, R.; Holohan, J.; Rhodes, R.; Winkel, G.; Ricci, E. M.; Clesca, C.; Richardson, L. D.

In: AJOB Empirical Bioethics, Vol. 9, No. 1, 02.01.2018, p. 39-47.

Research output: Contribution to journalArticle

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AU - Wilets, I.

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AU - Rhodes, R.

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