ArticleJournal of medical ethics2007
Attitudes of research ethics board chairs towards disclosure of research results to participants: results of a national survey.
Article in Journal of medical ethics, 2007. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled 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.
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
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 46 citations in OpenAlex.
- Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.Circulation. Cardiovascular genetics · 2010Guideline
- Patient perspective of Hesitancies and strategies to increase cancer clinical trial participation.Journal of clinical and translational science · 2026Article
- Article
- Site staff perspectives on communicating trial results to participants: Cost and feasibility results from the Show RESPECT cluster randomised, factorial, mixed-methods trial.Clinical trials (London, England) · 2023Article
- Decentralized study of COVID Vaccine Antibody Response (STOPCoV): Results of a participant satisfaction survey.PLOS digital health · 2023Article
- Characterizing health researcher barriers to sharing results with study participants.Journal of clinical and translational science · 2019Article
- Patient involvement in clinical research: why, when, and how.Patient preference and adherence · 2016Review
- Participant preferences for the provision of registration trials results.Journal of clinical medicine research · 2013Article
- Management of incidental findings during imaging research in "healthy" volunteers: current UK practice.The British journal of radiology · 2012Article
- Feedback of trial results to participants: a survey of clinicians' and patients' attitudes and experiences.European journal of oncology nursing : the official journal of European Oncology Nursing Society · 2011Article
- Researcher practices on returning genetic research results.Genetic testing and molecular biomarkers · 2010Article
- Communicating the results of research: how do participants of a cardiac rehabilitation RCT prefer to be informed?Health expectations : an international journal of public participation in health care and health policy · 2010Article
- Communicating the results of clinical research to participants: attitudes, practices, and future directions.PLoS medicine · 2008Article
- Assessment of Covert Consciousness in the Intensive Care Unit: Clinical and Ethical Considerations.The Journal of head trauma rehabilitationArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe offer of aggregate study results to research participants following study completion is increasingly accepted as a means of demonstrating greater respect for participants. The attitudes of research ethics board (REB) chairs towards this practice, although integral to policy development, are unknown.
objectivesTo determine the attitudes of REB chairs and the practices of REBs with respect to disclosure of results to research participants.
designA postal questionnaire was distributed to the chairs of English-language university-based REBs in Canada. In total, 88 REB chairs were eligible. The questionnaire examined respondents' attitudes towards offering participants completed study results, methods for delivering this information, and barriers to disclosing results.
findingsThe response rate was 89.8%. Chairs were highly supportive (94.8%) of offering results to research participants. Only 19.5% of chairs responded that a policy or guideline that governed the return of research results to participants existed at their institution. Most chairs (72.0%) supported the idea of their REB instituting a set of guidelines recommending that researchers offer results to participants in a lay format. Chairs identified the major impediments to the implementation of programmes offering to return results to participants as being financial cost (57.5%) and retaining contact with research participants (78.1%).
conclusionsUniversity-based REB chairs overwhelmingly support the offer of research results to participants. This is incongruent with the frequent lack of existing REB guidelines recommending this practice. REBs should support guidelines that diminish identified barriers and promote consistency in offering to return results.
Indexed as
Identifiers
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.