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

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van der Velden, FJS, Lim, E, Gills, L, Broadey, J, Hayes, L, Roberts, E, Courtney, J, Ball, J, Herberg, J, Galassini, R et al (show 90 more authors) , Emonts, M, Levin, M, Cunnington, A, Kaforou, M, Wright, V, Bellos, E, Broderick, C, Channon-Wells, S, Cooray, S, De, T, D’Souza, G, Elorrieta, LE, Estrada-Rivadeneyra, D, Habgood-Coote, D, Hamilton, S, Jackson, H, Kavanagh, J, Marjaneh, MM, Nichols, S, Nijman, R, Patel, H, Pennisi, I, Powell, O, Reid, R, Shah, P, Vito, O, Whittaker, E, Wilson, C, Womersley, R, Abdulla, A, Darnell, S, Mustafa, S, Georgiou, P, Manzano, JR, Moser, N, Carter, M, Tibby, S, Cohen, J, Davis, F, Kenny, J, Wellman, P, White, M, Fish, M, Jennings, A, Shankar-Hari, M, Fidler, K, Agranoff, D, Dudley, J, Richmond, V, Seal, M, Faust, S, Owen, D, Ensom, R, McKay, S, Mondo, D, Shaji, M, Schranz, R, Rughnani, P, Anpananthar, A, Liebeschuetz, S, Riddell, A, Divakaran, D, Han, L, Khalid, N, Malcolm, IL, Schofield, J, Simagan, T, Peters, M, Bamford, A, O’Neill, L, Pathan, N, Daubney, E, White, D, Heightman, M, Eisen, S, Segal, T, Wellings, L, Drysdale, SB, Branch, N, Hamzah, L, Jarman, H, Nyirenda, M, Capozzi, L, Gardiner, E, Moots, R ORCID: 0000-0001-7019-6211, Nasher, M, Hanson, A, Linforth, M, O’Riordan, S and Ellis, D (2023) Biobanking and consenting to research: a qualitative thematic analysis of young people’s perspectives in the North East of England BMC Medical Ethics, 24 (1). 47-. ISSN 1472-6939, 1472-6939

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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.

Item Type:	Article
Uncontrolled Keywords:	DIAMONDS consortium, Humans, Prospective Studies, Qualitative Research, Informed Consent, Parental Consent, Adolescent, Child, Biological Specimen Banks, England, Female
Divisions:	Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Life Courses & Medical Sciences
Depositing User:	Symplectic Admin
Date Deposited:	09 Aug 2023 14:55
Last Modified:	24 Jan 2026 04:31
DOI:	10.1186/s12910-023-00925-w
Related Websites:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3172161
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