Dataset Information

Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England.

ABSTRACT:

Background

Biobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people's (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.

Methods

We designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent at age of capacity. The survey was disseminated via the Young Person's Advisory Group North England (YPAGne) and participating CYP's secondary schools. Data were analysed using a qualitative thematic approach by three independent reviewers (including CYP) to identify common themes. Data triangulation occurred independently by a fourth reviewer.

Results

One hundred two 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). Acceptability of prospective consent for biobanking was high (91.2%, N = 93) with common themes: 'altruism', 'potential benefits outweigh individual risk', 'frugality', and '(in)convenience'. Deferred consent was also deemed acceptable in the large majority (84.3%, N = 86), with common themes: 'altruism', 'body integrity' and 'sample frugality'. 76.5% preferred to reconsent when cognitively mature enough to give assent (N = 78), even if parental consent was previously in place. 79.2% wanted to be informed if their biobanked biospecimen is reused (N = 80).

Conclusion

Prospective and deferred consent acceptability for biobanking is high among CYP in the UK. Altruism, frugality, body integrity, and privacy are the most important themes. Clear communication and justification are paramount to obtain consent. Any CYP with capacity should be part of the consenting procedure, if possible.

SUBMITTER: van der Velden FJS

PROVIDER: S-EPMC10324191 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature

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Publications

Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England.

van der Velden Fabian J S FJS Lim Emma E Gills Lily L Broadey Jasmin J Hayes Louise L Roberts Eve E Courtney Jack J Ball Joanne J Herberg Jethro J Galassini Rachel R Emonts Marieke M

BMC medical ethics 20230705 1

<h4>Background</h4>Biobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people's (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.<h4>Methods</h4>We designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) ...[more]

PMID: 37407992

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Dataset Information

Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England.

Background

Methods

Results

Conclusion

Publications

Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England.

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