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Returning aggregate research results to participants: a scoping review of current practices, preferences and challenges

Por: Idnay · B. · Zhang · Y. · Sandra Therese · K. · Nestor · J. G. · Chung · W. K. · Weng · C.
Objectives

To 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.

Design

Scoping 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.

Results

Of 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.

Conclusions

Returning 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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