van der Velden, Fabian JS 
ORCID: 0000-0001-7864-4074, Lim, Emma, Gills, Lily, Broadey, Jasmin, Hayes, Louise, Roberts, Eve, Courtney, Jack, Ball, Joanne, Herberg, Jethro, Galassini, Rachel et al (show 2 more authors)
(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-.
|
PDF
Biobanking and consenting to research a qualitative thematic analysis of young peoples perspectives in the North East of Eng.pdf - Open Access published version Download (1MB) | Preview |
Abstract
<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) 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.<h4>Results</h4>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).<h4>Conclusion</h4>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 and Life Sciences Faculty of Health and Life Sciences > Institute of Life Courses and Medical Sciences |
| Depositing User: | Symplectic Admin |
| Date Deposited: | 09 Aug 2023 14:55 |
| Last Modified: | 09 Aug 2023 14:55 |
| DOI: | 10.1186/s12910-023-00925-w |
| Related URLs: | |
| URI: | https://livrepository.liverpool.ac.uk/id/eprint/3172161 |
Dimensions
Dimensions
