Medizinische Universität Graz Austria/Österreich - Forschungsportal - Medical University of Graz
Gewählte Publikation:
SHR Neuro Krebs Kardio Lipid Stoffw Microb
van, der, Velden, FJS; Lim, E; Gills, L; Broadey, J; Hayes, L; Roberts, E; Courtney, J; Ball, J; Herberg, J; Galassini, R; Emonts, M, , DIAMONDS, consortium, , DIAMONDS, consortium.
Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England.
BMC Med Ethics. 2023; 24(1): 47
Doi: 10.1186/s12910-023-00925-w
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- Study Group Mitglieder der Med Uni Graz:
- Bauchinger Sebastian
- Benesch Martin
- Binder Alexander
- Eber Ernst
- Gallistl Siegfried
- Haidl Harald
- Hauer Almuthe
- Kohlmaier Benno
- Leitner Manuel
- Pölz Lena
- Rajic Glorija
- Rusu Alexandra
- Sagmeister Manfred Gerald
- Schweintzger Nina
- Stoiser Bianca
- Strempfl Martina
- Zenz Werner
- Zurl Christoph Johann
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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.
- Find related publications in this database (using NLM MeSH Indexing)
- Child - administration & dosage
- Humans - administration & dosage
- Female - administration & dosage
- Adolescent - administration & dosage
- Biological Specimen Banks - administration & dosage
- Prospective Studies - administration & dosage
- Informed Consent - administration & dosage
- Parental Consent - administration & dosage
- Qualitative Research - administration & dosage
- England - administration & dosage
- Find related publications in this database (Keywords)
- Paediatrics
- Biobank
- Consent
- Assent
- Children and young people