Most relevant questions for the ALBINO scenario
| % agreement | Total | ProP | PNeo | PAx |
| 5.8 ‘I think that I would make the right decision even in this emergency. Therefore, I would prefer to only be informed in a few sentences and to be asked for short (oral) consent before administering the study medication.’ | 55 % | 54 % | 60 % | 50 % |
| 5.9 ‘In the emergency described, I would be glad not to have been asked for permission to give the study medication, because I would have felt helpless and unable to make decisions, and I would probably have followed the advice of the physicians anyway.’ | 43 % (disagree: 47 %) | 40 % (disagree: 54 %) | 34 % (disagree: 54 %) | 57 % (disagree: 30 %) |
| 5.16 ‘If my child has been given study medication in an emergency without my prior consent, I would decide afterwards as follows (after detailed information):’ | ||||
| ‘I would agree to participate afterwards.’ (deferred consent) | 48 % | 40 % | 43 % | 67 % |
| ‘I would refuse to participate afterwards.’ (deferred consent) | 4 % | 7 % | 0 % | 3 % |
| ‘I would have refused to participate before the birth.’ (prenatal consent) | 2 % | 2 % | 3 % | 0 % |
| ‘I do not know/ I am not sure for any scenario.’ | 46 % | 51 % | 54 % | 30 % |
| 5.17 ‘I think that giving a study medication in this situation without my knowledge is so inappropriate that I would take legal action against the investigators.’ | 8 % | 14 % | 0 % | 10 % |
PAx, parents of neonates treated for perinatal asphyxia ; PNeo, parents of healthy newborns; ProP, prospective parents.