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Returning aggregate research results to participants: a scoping review of current practices, preferences and
Betina Idnay1, Yiwen Zhang1, Kathleen Sandra Therese1
1Biomedical Informatics, Columbia University in the City of New York, New York, New York, USA.
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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