Article Text
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
Statistics from Altmetric.com
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.
Read the full text or download the PDF:
Other content recommended for you
- Duty to disclose what? Querying the putative obligation to return research results to participants
- Western Regional Meeting Abstracts
- Is it ethical to deny genetic research participants individualised results?
- Western Medical Research conference (formerly Western Regional Meeting), January 25–27 2018, Carmel, California
- WESTERN REGIONAL MEETING AT A GLANCE
- Assent as an ethical imperative in the treatment of ADHD
- Western Regional Meeting Abstracts
- ‘Ethical responsibility’ or ‘a whole can of worms’: differences in opinion on incidental finding review and disclosure in neuroimaging research from focus group discussions with participants, parents, IRB members, investigators, physicians and community members
- 2021 Western Medical Research Conference
- The search for clarity in communicating research results to study participants