Table 4 Quantitative summary of themes
From: Co-designing genomics research with a large group of donor-conceived siblings
Theme | Number of participants |
|---|---|
Anyone should be involved in research | 6 |
Research with sibling group is unique and complex but important | 6 |
Those affected by research should be involved | 6 |
Research for profit and ‘bullying’ by ‘big pharma’ | 6 |
Who decides who decides what is ethical? | 5 |
Concerns about genomics research being used for political purposes | 5 |
Finding out they are part of sibling group has been a positive experience | 4 |
View on topics for research | 4 |
Participants reported changed views and perspectives as a result of participating | 4 |
Desire to improve situation for people affected by assisted conception | 3 |
Interested in learning what other siblings think and discuss issues | 3 |
Concerns about control of knowledge and data | 3 |
Questioning which groups should have ‘equal influence’? | 3 |
Questioning eugenic attitudes to genomic variations | 3 |
Views on participation in genomics research | 3 |
Participants learned about genomics | 3 |
Motivation for participation to help researchers and sibling group | 2 |
Uncertainty about what they can offer but happy to help | 2 |
What is the purpose of research? | 2 |
Experts should be involved (over seen by ethics boards) | 2 |
Developments in genomics have significant implications for society | 2 |