Scientific article
OA Policy
English

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

CollaboratorsPosfay Barbe, Klara
Published inBMC medical ethics, vol. 24, no. 1, 47
Publication date2023-07-05
First online date2023-07-05
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.

Keywords
  • Assent
  • Biobank
  • Children and young people
  • Consent
  • Paediatrics
  • Child
  • Humans
  • Female
  • Adolescent
  • Biological Specimen Banks
  • Prospective Studies
  • Informed Consent
  • Parental Consent
  • Qualitative Research
  • England
Funding
  • National Institute for Health Research (NIHR) [NIHR200224]
  • Horizon 2020 Framework Programme [848196]
Citation (ISO format)
VAN DER VELDEN, Fabian J S et al. Biobanking and consenting to research: a qualitative thematic analysis of young people’s perspectives in the North East of England. In: BMC medical ethics, 2023, vol. 24, n° 1, p. 47. doi: 10.1186/s12910-023-00925-w
Main files (1)
Article (Published version)
Identifiers
Journal ISSN1472-6939
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19downloads

Technical informations

Creation24/09/2024 09:47:59
First validation09/10/2024 09:47:46
Update30/10/2024 10:31:27
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