ArticleJournal of medical ethics2006
Informing research participants of research results: analysis of Canadian university based research ethics board policies.
Article in Journal of medical ethics, 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
What it found
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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
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Recommendations for the return of research results to study participants and guardians: a report from the Children's Oncology Group.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2012Guideline
- 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
- Informed consent in genomic research and biobanking: taking feedback of findings seriously.Global bioethics = Problemi di bioetica · 2020Article
- Returning research results: caregivers' reactions following computerized cognitive training among childhood cancer survivors.Neuro-oncology practice · 2018Article
- Sharing the Knowledge: Sharing Aggregate Genomic Findings with Research Participants in Developing Countries.Developing world bioethics · 2015Review
- Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Basic principles and technologies for deciphering the genetic map of cancer.World journal of surgery · 2009Review
- Developing a tissue resource to characterize the genome of pancreatic cancer.World journal of surgery · 2009Article
- Providing research results to participants: attitudes and needs of adolescents and parents of children with cancer.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2009Article
- Communicating the results of clinical research to participants: attitudes, practices, and future directions.PLoS medicine · 2008Article
- Research ethics and the challenge of whole-genome sequencing.Nature reviews. Genetics · 2008Review
- Attitudes of research ethics board chairs towards disclosure of research results to participants: results of a national survey.Journal of medical ethics · 2007Article
- Offering results to research participants.BMJ (Clinical research ed.) · 2006Article
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDespite potential benefits of the return of research results to research participants, the TriCouncil Policy Statement (TCPS), which reflects Canadian regulatory ethical requirements, does not require this. The policies of Canadian research ethics boards (REBs) are unknown.
objectivesTo examine the policies of Canadian university based REBs regarding returning results to research participants, and to ascertain if the presence/absence of a policy may be influenced by REB member composition.
designEmail survey of the coordinators of Canadian university based REBs to determine the presence/absence of a policy on return of research results to research participants both during an ongoing study and at conclusion. REB coordinators were asked to return a copy of the policy or guidelines and to describe the member composition of their REB.
findingsOf 50 REBs that were contacted 34 (68%) responded and 22 (64.7%) met the inclusion criteria. Two (9.1%) had a policy that governed the return of research results while on a study, and seven (31.8%) following the completion of a study. Presence of an ethicist or a lawyer on the REB did not influence the presence/absence of such policies. No REBs had specific guidelines describing how participants should be informed of results.
conclusionsMost REBs did not require researchers to disclose study results to research participants either during or following a study. Thus this study identifies an ethical shortcoming in the conduct of human research in Canada. It has also demonstrated that there are no clear recommendations by REBs to facilitate the return of results to participants following research projects.
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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.