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Table 5 Summary of pre and post survey responses

From: Co-designing genomics research with a large group of donor-conceived siblings



What made you decide to respond to our invitation to participate in this project? 12 participants responded (pre-discussion)

Participants wanted an ‘opportunity to be involved in research’ [P3], wanted to ‘learn more’ [P7] and regarded involvement as a ‘civic duty’ [P10]. Others stated this study may be useful to ‘future donor offspring’ [P11] and one participant stated ‘curiosity’ was a reason for participation. Four participants noted a familial connection to a member of the study team (JN)

What do you hope to get out of participating in this discussion? Do you have any specific expectations? 8 participants responded (pre-discussion)

Participants were ‘interested in hearing what their half siblings think’ [P4] and wanted an ‘opportunity to discuss’ and ‘think through the issues involved’ [P4] [P6]. One participant said they wanted ‘the satisfaction of knowing that I may have contributed’ to the study [P10]. Another wanted ‘to be useful to the researchers’ [P11]. One participant noted an expectation of anonymity while participating

Do you have any ideas about how the different people could influence future research? 7 participants responded pre-discussion and 3 post-discussion

Five participants said ‘everyone should be involved in research’, with one adding ‘not just scientists and researchers’ [P5-pre]. One participant said ‘anyone with an opinion’ should be involved [P3-pre]. Another stated ‘researchers and those who are affected by what is being researched’ [P4-pre]. One participant stated ‘People who know their subject but do not have hidden motives or agendas’ should be involved [P2-pre]. One participant said the answer depended on ‘what kind of research it is’ [P7-pre] and one mentioned ‘ongoing discussions’ using online tools [P5-post]

Is there anything in particular you liked or thought was helpful about how the discussion was conducted? 5 participants responded (post-discussion)

One participant stated they ‘liked and appreciated the opportunity to participate’ [P6]. One participant stated the process ‘seemed to work well’ [P7]. One participant added ‘I think it is commendable that there is a concern about participatory research’ [P9]

Is there anything you didn’t like, thought was unhelpful or could have been improved about how the discussion was conducted? 5 participants responded (post-discussion)

Two participants reported finding the platform ‘complicated’ and problematic [P5]. Two participants stated they would have liked ‘more time’ for the process [P4]

Did you have any expectations from participating in this research that were met or not met? 6 participants responded (post-discussion)

Four participants stated their expectations were met. One responded that they ‘found some of the questions very complex and had difficulty answering them’ [P5]