Backgrounds:

Biobanking samples and consent are common practice in paediatric infectious diseases research. We aimed to gain insight into children and young people’s (CYP) knowledge and perspectives around current biobanking and consent practices, to improve consent procedures.

Methods:

We designed a survey aimed at CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent.

The survey was disseminated via Young Person’s Advisory Group North England and participating CYP’s secondary schools.

Data were analysed utilising a qualitative thematic approach by three independent reviewers, and common themes identified. Data triangulation occurred independently by a 4^th reviewer.

Results:

102 CYP completed the survey. Most were between 16-18 years (63.7%, n=65) and female (66.7%, n=68). 72.3% had no prior knowledge of biobanking (n=73)

Prospective consent acceptability for biobanking was high (91.2%, n=93); main themes ‘altruism’ and ‘potential benefits outweigh individual risks’, and ‘increased complication risk’.

Deferred consent acceptability was lower (84.3%, n= 86), common themes: ‘altruism’, ‘body integrity’, and ‘sample frugality’. 76.5% preferred to reconsent when mature enough to give assent (n=78). 79.2% wanted to be informed if their biobanked sample is reused (n=80).

Conclusions/Learning Points:

Prospective and deferred consent acceptability for biobanking is high among CYP. ‘Altruism’, ‘frugality’ and ‘body integrity’ are important themes. Clear communication and justification are paramount. CYP with capacity should be part of the consenting procedure, whenever possible.

Acknowledgements

This project received funding under the European Union’s Horizon2020 Research and Innovation programme, under grant agreement number 848196.