Evidence map›Paper›PMID 29368998›Full record

ArticleAJOB empirical bioethics

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

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

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in AJOB empirical bioethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 126 papers, 5 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
126citing papers in PubMed, 5 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

126 citing papers in PubMed, 5 syntheses or guidelines pooled it.

  1. Pooled it
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  11. Assessing COVID-19 Testing Strategies in K-12 Schools in Underserved Populations.Journal of public health management and practice : JPHMP
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  19. Trust As the Foundation for Informed Decision-Making in Prenatal Genetic Screening and Diagnostic Testing: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  20. Article

66 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

M Smirnoffa Department of Emergency Medicine , Icahn School of Medicine at Mount Sinai.
I Wiletsa Department of Emergency Medicine , Icahn School of Medicine at Mount Sinai.
D F Raginb Department of Psychology , Montclair State University.
R Adamsc National Health Service.
J Holohand Department of Nursing , New York Presbyterian Weill Cornell Hospital.
R Rhodesa Department of Emergency Medicine , Icahn School of Medicine at Mount Sinai.
G Winkela Department of Emergency Medicine , Icahn School of Medicine at Mount Sinai.
E M Riccie Graduate School of Public Health , University of Pittsburg.
C Clescaa Department of Emergency Medicine , Icahn School of Medicine at Mount Sinai.
L D Richardsona Department of Emergency Medicine , Icahn School of Medicine at Mount Sinai.

Funding

Research Without Consent: The Community PerspectiveR01HL073387 · NHLBI · MOUNT SINAI SCHOOL OF MEDICINE OF NYU · PI RICHARDSON, LYNNE D. · 2003 to 2016
$7.2M
NHLBI NIH HHS R01 HL073387
6 · The paper itself

Abstract

backgroundTo 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.

methodsA 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%).

resultsGenerally 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).

conclusionsThe 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.

Indexed as

AttitudeBiomedical ResearchCommunity-Institutional RelationsTrustAdultAgedAged, 80 and overBlack or African AmericanFemaleHealth Status DisparitiesHispanic or LatinoHumansMaleMiddle AgedNew York CityPatient Selectiondisabilityethnicitylimited English proficiencyraceresearch mistrustresearch trust

Identifiers

PMID29368998
PMCPMC6092744

What OpenQuestion holds

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Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.