Biobanking and consenting to research: a qualitative thematic analysis of young people’s perspectives

Biobanking and consenting to research: a qualitative thematic analysis of young people’s perspectives
Fabian van der Velden, Lily Gills, Jasmin Broadey, Louise Hayes, Eve Roberts, Jack Courtney, Joanne Ball, Marieke Emonts, Emma Lim
BMJ Archives of Disease in Childhood, 17 August 2022
Abstract
Aims
Biobanking biological samples and consenting patients are common practice in paediatric infectious diseases research. We aimed to gain insight into young people’s knowledge, views and perspectives around current practices of biobanking and consent, in order to improve consent procedures.
Methods
We designed a structured electronic survey aimed at children and young people (CYP), 11-21 years of age, collecting demographic data, and views on biobanking and consent using four scenarios: 1) prospective consent, 2) deferred consent, 3) reconsent and assent age, and 4) animal studies. The survey was disseminated via Young Person’s Advisory Group North England (YPAGne) and other YPAGs social media channels and to the secondary schools of participating young people in this project. Data were analysed utilising a qualitative thematic approach by three independent data reviewers and common themes identified. Triangulation of data by a 4th reviewer occurred independently. Data were collected in two time waves. The second wave ensured data saturation.
Results
102 CYP completed the survey. All were ≥11 years old, the majority between 16-18 years (63.7%, n=65), female (66.7%, n=68), and from North East England and Cumbria (82.4%, n=84). 73 had no prior knowledge of biobanking (72.3%). Prospective consent acceptability for biobanking was high (91.2%, n=93), with main themes being ‘altruism’ and ‘potential benefits outweigh individual risks’. Main themes against were ‘increased risk of complications’ and ‘needle phobia’. Deferred consent acceptability was lower (84.3%, n= 86), common themes were: ‘altruism’, ‘body integrity’, and ‘sample frugality’. Participants state that prospective consent is preferable, but not always appropriate given the clinical situation. Communication is key and it is important to state why deferred consent is needed, and participation can still be declined. Those opposing deferred consent state it violated their integrity and takes away their control over their own body. Reconsent once children reach the age of informed assent was preferred by 76.5% of CYP (n=78), the majority stating an age >14 years as appropriate. 79.2% would want to be informed if their biobanked sample is used in future research (n=80). Just over half agrees with samples being used for animal testing (54.5%, n=55), which goes up to 80.2% (n=81) if explained as the last necessary step prior to human testing for medical research.
Conclusion
Acceptability of prospective and deferred consent for biobanking is high among CYP, with ‘altruism’, ‘frugality’ and ‘body integrity’ as important themes. Justification and clear communication are paramount and assent should be obtained from any CYP with capacity. CYP should be part of the consenting procedure, not just their parent/legal guardian.