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Attitudes of research ethics board chairs towards disclosure of research results to participants: results of a national survey
  1. S Danielle MacNeil1,
  2. Conrad V Fernandez2
  1. 1Department of Surgery, Division of Otolaryngology, University of British Columbia, Vancouver, British Columbia, Canada
  2. 2Departments of Pediatrics and Bioethics, IWK Health Centre and Dalhousie University, Halifax, Nova Scotia, Canada
  1. Correspondence to:
 Conrad V Fernandez
 Department of Pediatrics, IWK Health Centre, PO Box 9700, 5850/5980 University Avenue, Halifax, Nova Scotia, B3K 6R8 Canada; conrad.fernandez{at}iwk.nshealth.ca

Abstract

Background: The 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.

Objectives: To determine the attitudes of REB chairs and the practices of REBs with respect to disclosure of results to research participants.

Design: A 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.

Findings: The 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%).

Conclusions: University-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.

  • IRB, institutional research board
  • REB, research ethics board
  • ethics committees
  • research subjects
  • research ethics
  • disclosure

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Footnotes

  • This research was supported by a grant from the Dalhousie Medical Research Foundation, (Dalhousie Medical School, Halifax, Canada) and by an IWK Category A Grant (IWK Health Centre, Halifax, Canada). The researchers are free to publish their research findings.

  • Competing interests: None declared.

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