STARDIT/Co-designing genomics research with donor-conceived siblings
State ongoing
Start 2018-10-01
Form updated 2021-09-07
Checked report data and contributed additional data
Checked report data and contributed additional data
Checked report data and contributed additional data
Checked report data and contributed additional data
Inputs
ID: 0000-0003-0316-3254
Task: Led research project, involved in co-designing every stage of the process, leading participatory action research process, leading co-design of online surveys, leading co-design of online discussions, analysing feedback from co-design process, leading data analysis
Method: leading participatory action research process, leading co-design of online surveys, leading co-design of online discussions, analysing feedback from co-design process, leading data analysis
Communication: face to face meetings, telecommunications, online text-based discussions, email
Compensation: other(La Trobe University Postgraduate Research Scholarship)
Competing interests: biologically related to research participants
Research lead
ID: 0000-0002-2870-0506
Task: Involved in co-designing every stage of the process, critically appraising research plan, analysing data
Method: Member of research team
Recruitment: personal introduction from members of sibling group
Communication: email, telecommunications, online text-based discussions
Competing interests: Previous research with members of sibling group, professional interest in research with donor-conceived people
ID: 0000-0002-0902-6798
Task: Involved in co-designing every stage of the process, critically appraising research plan, analysing data
Competing interests: PhD co-supervisor of Jack Nunn
End 2018-10-31
Task: refining wording of participant information, sharing views and advice about the process, proof-reading documents, providing feedback on surveys, analysing data, informing planning, and providing feedback on planned online discussions. Members of this grouping were also involved in checking the content of Genetics Society UK podcast, with the recording shared with all participants before dissemination to ask them to check the content was accurate and acceptable (https://web.archive.org/web/20200203055447/https://geneticsunzipped.com/blog/2020/1/16/family-secrets-revealed-by-genetic-testing)
Method: participated in co-design process
Recruitment: email invitation shared by member of sibling group with all known members of sibling group
Communication: email, commenting on shared documents, telecommunications
Competing interests: biologically related to other members of sibling group and lead researcher (Jack Nunn)
Members of the sibling group who did not participate in online discussion gave feedback on the planned research, including planned co-design process
End 2018-10-31
Task: refining wording of participant information, sharing views and advice about the process, proof-reading documents, providing feedback on surveys, analysing data, informing planning, and providing feedback on planned online discussions. Members of this grouping were also involved in checking the content of Genetics Society UK podcast, with the recording shared with all participants before dissemination to ask them to check the content was accurate and acceptable (https://web.archive.org/web/20200203055447/https://geneticsunzipped.com/blog/2020/1/16/family-secrets-revealed-by-genetic-testing). Members of this group were also sent the article and additional files to check the analysis and content and were invited to be authors of the Alpha version STARDIT report.
Method: participated in co-design process
Recruitment: email invitation shared by member of sibling group with all known members of sibling group
Communication: email, commenting on shared documents, telecommunications
Competing interests: biologically related to other members of sibling group and lead researcher (Jack Nunn)
Members of the sibling group who did participate in online discussion gave feedback on the planned research
0 (AUD)
volunteering hours
25
Outputs and impacts
Start: 2018-10-01
End 2018-11-01
Impact: Improved understandability of resources
improved wording that waculturally appropriate (using terminology preferred by the sibling group to describe biological relations)
Impact: wording more appropriate and acceptable
improved online discussion design
Impact: online discussion design was improved by making questions more focussed and clear, thus improving quality of online discussions
improved learning resources for participants
Impact: learning and development resources were reported as helpful and useful
improved co-design process
Impact: language to describe the recruitment to the co-design process was made more comprehensible, helping people understand it was distinct from participating in the research project
Involving potential participants in co-defining language used to describe the sibling group helped ensure that language was acceptable and appropriate.
The co-design process took longer than expected owing to ethical ‘grey areas’ with no clear instruction on whether ethics approval was required to involve people in co-design. As a result an ethics application was made and subsequent feedback from the co-design process was integrated using modifications to the ethics application.
The entire study team agreed that limitations in the ethics process affected the extent of how the sibling group could be involved in the study. Internationally, confusion still surrounds what ethical approval is required before involving potential participants in co-designing research. On the advice of the La Trobe University Human Research Ethics Committee, the study team did not approach potential participants about co-designing the study until after ethics approval had been granted, with feedback from participants being incorporated by a number of subsequent modifications to the original ethics application. As a result of the complex process of modifications, the timeline for feedback was shorter than the study team had anticipated, although the process did provide useful feedback.
Ambiguous policies for the ethical involvement of people in co-designing research can hamper the degree of control potential participants have in research and further clarity from ethics committees will enhance power sharing at this crucial stage of research.