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What does ‘respect for persons’ require? Attitudes and reported practices of genetics researchers in informing research participants about research
  1. Fiona Alice Miller1,
  2. Robin Zoe Hayeems1,
  3. Li Li2,
  4. Jessica Peace Bytautas1
  1. 1Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
  2. 2Department of Statistics, University of Toronto, Toronto, Ontario, Canada
  1. Correspondence to Dr Fiona Alice Miller, Department of Health Policy, Management and Evaluation, University of Toronto, 155 College St, 4th Floor, Toronto, ON M5T 3M6, Canada; fiona.miller{at}utoronto.ca

Abstract

Background It has been suggested that researchers are obliged to offer summary findings to research participants to demonstrate respect for persons, and that this may increase public trust in, and awareness of, the research enterprise. Yet little research explores researchers' attitudes and practices regarding the range of initiatives that might serve these ends.

Methods Results of an international survey of 785 eligible authors of genetics research studies in autism or cystic fibrosis are reported.

Results Of 343 researchers who completed the survey (44% response rate), the majority agreed that their team should (i) inform participants of summary findings (90.7%) and (ii) ensure they gain an awareness of developments in the field (86.9%). Additionally, the majority reported that in practice, their team (i) informs participants of summary findings (69.4%) and (ii) provides other types of relevant non-results information (eg, state of science in the field, opportunities for research participation) (67.9%).

Conclusion Researchers endorsed the obligation of communicating with research participants by providing summary findings and other research-related information in equal measure. In light of these findings, it is suggested that while the provision of summary results may contribute to efforts to discharge the obligation of respect for persons, it may be neither a necessary nor a sufficient means to this end.

  • Research ethics
  • genetic research
  • communicating research results
  • autism spectrum disorders
  • cystic fibrosis
  • Scientific Research
  • Policy Guidelines/Inst. Review Boards/Review Cttes

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Footnotes

  • Funding Genome Canada, 150 Metcalfe Street, Suite 2100, Ottawa, ON K2P 1P1, Canada.

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the University of Toronto Health Sciences Research Ethics Board and the Hospital for Sick Children Research Ethics Board.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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