Table 3 Summary of outcomes from the process
From: Involving people affected by a rare condition in shaping future genomic research
Outcome | Summary |
|---|---|
1. Learning resources useful | Participants stated that the learning resources were useful and helped improve their understanding of genomics, research and the associated ethical, legal and social implications. |
2. Changed views | Participants reported that the process of being part of an online discussion gave them an opportunity to ‘learn a lot’ about the views and experiences of others and reflect [P25]. Participants reported that this ‘challenged’ them into ‘rethinking’ or changing or their own views on certain issues [P25]. |
3. Enjoyed online discussions | Four participants said they enjoyed being part of the process and preferred it when compared with other methods such as face to face discussion or interviews. |
4. Online discussions to be used in future research prioritisation | The President of AusEE stated that the discussion had ‘given her an idea’ and that she would combine face to face and online discussions into a process to involve people in deciding how the medical research fund is spent. |
5. Participants asked to stay involved in the research | Participants requested to stay involved in the research process, including in analysing data and being co-authors on the paper. |
6. Improved understanding of how to get involved in research | Participants reported improved understanding of genomics research, including how they could be involved. |