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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