ArticleBMJ open2025
Returning aggregate research results to participants: a scoping review of current practices, preferences and challenges.
Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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.
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.
Who cites it
2 citing papers in PubMed.
- Addressing a gap in community-engaged research: reporting results of congregations' implementation capacity assessment to research participants.Frontiers in public health · 2026Article
- Preferences of research participants with experience receiving individual results for future return of results.Journal of clinical and translational science · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
objectivesTo synthesise the current evidence about practices, preferences and challenges related to returning aggregate research results to participants, with implications for public health, health equity and policy development.
designScoping review conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews framework. DATA SOURCES: Four electronic databases-PubMed (National Library of Medicine), Excerpta Medica Database (Elsevier), Cumulative Index to Nursing and Allied Health Literature (Elton B. Stephens CO(mpany)) and Cochrane Library (Wiley)-were from inception to February 2025. ELIGIBILITY CRITERIA: English-language, peer-reviewed articles reporting practices or preferences for returning aggregate clinical research results to participants. Studies reporting only individual/incidental findings, opinion pieces and non-original research were excluded. DATA EXTRACTION AND SYNTHESIS: Two reviewers independently screened studies and extracted data. Study quality was assessed using a modified Oxford Centre for Evidence-Based Medicine scale. Thematic synthesis identified patterns in dissemination methods, participant preferences and implementation barriers.
resultsOf 272 articles screened, 12 published between 2002 and 2019 were included. They employed cross-sectional, qualitative and mixed-methods design across North America, Europe, Africa and Australia. Half focused on cancer; others addressed malaria, autism, hypothyroidism, HIV prevention and preterm labour. Most (8/12) included patients; others also included researchers, caregivers or mixed stakeholders. Participants were predominantly middle-aged or older, female and well-educated. Only two studies assessed literacy, both using unvalidated self-reports. Eight studies explored preferences without returning results; four implemented disseminations via mailed reports, printed summaries, in-person discussions or digital platforms. Participants favoured mailed letters and face-to-face meetings over online methods. Six themes emerged: receiving results as respect; preference for personalised, timely formats; importance of cultural tailoring; emotional and ethical considerations; institutional barriers; and community engagement as a facilitator.
conclusionsReturning aggregate research results to participants is ethically supported and strongly desired yet rarely practised. Bridging this gap requires clearer policy guidance, institutional support and equity-focused dissemination strategies. Health systems and researchers should adopt scalable, participant-centred approaches to fulfil ethical obligations and strengthen public trust in science.
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What OpenQuestion holds
Registered trials
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.