Table 2 Illustrative CYP quotes by consent strategy for biobanking and identified common themes
Consent strategy | Quote |
|---|---|
Prospective consent | |
Altruism | ‘Medical research is very important, and I would not mind helping’ ‘It allows the NHS to help more people who need it more than me’ |
Benefits outweigh risks | ‘There is no difference having extra taken, when the good it can do is immense’ ‘I have been asked for consent, and the procedure is happening anyways, so no harm to take it’ |
Frugality | ‘It would be a shame for any blood or tissue to go to waste when it could help someone’ |
(In)convenience | ‘It depends on what they’re taking and if I feel comfortable with it’ ‘It might depend on whether it would have noticeable impact on me/recovery time’ |
Deferred consent | |
Altruism | ‘Happy [to donate] if there is something left that could be helpful’ ‘It has no effect on me, yet has benefits for other people’ |
Body integrity | ‘I’m not entirely sure on this one: as long as consent is asked after it should be okay, but I also don’t like the idea of something being done to my body without consent in advance’ ‘I think deferred consent is wrong and I would definitely feel violated in this case’ |
Frugality | ‘I think destroying the sample would be a waste so it should go to a biobank’ ‘If the blood had been taken, it would better be used for something, rather than just being destroyed’ |
Assent and Reconsent | |
Ownership | ‘I think children deserve the right to consent, as long as they understand the choice they are making ‘A child’s no should be able to override a parents’ yes. But a child’s yes should require a yes from the parents as well’ ‘I think parents should make most of the decisions for young children, but definitely talk to them about it and ask how they feel’ |