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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
Biobanking and consenting to research: a qualitative thematic analysis of young people’s perspectives in the North East of England
BMC Medical Ethics, Volume 24, No. 1, Article 47, Year 2023
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Description
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. © 2023, The Author(s).
Authors & Co-Authors
van der Velden, Fabian Johannes Stanislaus
United Kingdom, Newcastle
The Newcastle Upon Tyne Hospitals Nhs Foundation Trust
United Kingdom, Newcastle
Newcastle University
Lim, Emma J.
United Kingdom, Newcastle
The Newcastle Upon Tyne Hospitals Nhs Foundation Trust
United Kingdom, Newcastle
Newcastle University
Hayes, Louise
United Kingdom, Newcastle
Newcastle University
Herberg, Jethro Adam
United Kingdom, London
Imperial College London
Galassini, Rachel
United Kingdom, London
Imperial College London
Emonts, Marieke
United Kingdom, Newcastle
The Newcastle Upon Tyne Hospitals Nhs Foundation Trust
United Kingdom, Newcastle
Newcastle University
Levin, Michael L.
Unknown Affiliation
Cunnington, Aubrey J.
Unknown Affiliation
Kaforou, Myrsini
Unknown Affiliation
Wright, Victoria J.
Unknown Affiliation
Bellos, Evangelos
Unknown Affiliation
Broderick, Claire
Unknown Affiliation
Channon-Wells, Samuel William
Unknown Affiliation
Cooray, Samantha
Unknown Affiliation
De, Tisham
Unknown Affiliation
D’Souza, Giselle
Unknown Affiliation
Elorrieta, Leire Estramiana
Unknown Affiliation
Estrada-Rivadeneyra, Diego
Unknown Affiliation
Habgood-Coote, Dominic
Unknown Affiliation
Hamilton, Shea
Unknown Affiliation
Jackson, Heather R.
Unknown Affiliation
Marjaneh, Mahdi Moradi
Unknown Affiliation
Nichols, Samuel J.
Unknown Affiliation
Nijman, Ruud Gerard
Unknown Affiliation
Patel, Harsita
Unknown Affiliation
Pennisi, Ivana
Unknown Affiliation
Powell, Oliver
Unknown Affiliation
Shah, Priyen
Unknown Affiliation
Vito, Ortensia
Unknown Affiliation
Whittaker, Elizabeth A.
Unknown Affiliation
Wilson, Clare M.
Unknown Affiliation
Womersley, Rebecca S.
Unknown Affiliation
Abdulla, Amina F.
Unknown Affiliation
Darnell, Sarah
Unknown Affiliation
Mustafa, Sobia
Unknown Affiliation
Georgiou, Pantelis
Unknown Affiliation
Moser, Nicolas
Unknown Affiliation
Carter, Michael J.
Unknown Affiliation
Tibby, Shane M.
Unknown Affiliation
Kenny, Julia M.
Unknown Affiliation
Wellman, Paul A.
Unknown Affiliation
Fidler, Katy J.
Unknown Affiliation
Agranoff, Daniel D.
Unknown Affiliation
Dudley, Julia R.
Unknown Affiliation
Richmond, Vivien
Unknown Affiliation
Faust, Saul N.
Unknown Affiliation
Liebeschuetz, Susan
Unknown Affiliation
Riddell, Anna C.
Unknown Affiliation
Peters, Mark John
Unknown Affiliation
Bamford, A. R.J.
Unknown Affiliation
O’Neill, Lauran
Unknown Affiliation
Pathan, Nazima
Unknown Affiliation
White, Deborah K.
Unknown Affiliation
Heightman, Melissa J.
Unknown Affiliation
Drysdale, Simon Bruce
Unknown Affiliation
Moots, Robert John
Unknown Affiliation
Deep, Akash
Unknown Affiliation
Gormley, Stuart
Unknown Affiliation
Paulus, Stéphane C.
Unknown Affiliation
Pollard, Andrew J.
Unknown Affiliation
Shrestha, Shrijana R.
Unknown Affiliation
Gurung, Meeru
Unknown Affiliation
Pokhrel, Bhishma R.
Unknown Affiliation
Bijukchhe, Sanjeev Man
Unknown Affiliation
Martinón-Torres, Federico
Unknown Affiliation
Salas, Antonio
Unknown Affiliation
González, Fernando Álvez
Unknown Affiliation
Bello, Xabier
Unknown Affiliation
Carnota, Sandra
Unknown Affiliation
Currás-Tuala, María José
Unknown Affiliation
Suárez, Carlos Durán
Unknown Affiliation
Vicente, Luisa García
Unknown Affiliation
Gõmez-Carballa, Alberto
Unknown Affiliation
Rial, Jose Gómez
Unknown Affiliation
Iglesias, Pilar Leboráns
Unknown Affiliation
Martinón-Torres, Nazareth
Unknown Affiliation
Sánchez, José María
Unknown Affiliation
Pérez, Belén Mosquera
Unknown Affiliation
Pardo-Seco, Jacobo
Unknown Affiliation
Pischedda, Sara
Unknown Affiliation
Calle, Irene Rivero
Unknown Affiliation
Rodríguez-Tenreiro, Carmen
Unknown Affiliation
Redondo Collazo, Lorenzo
Unknown Affiliation
Fernández, Sonia Serén
Unknown Affiliation
Carrol, Enitan D.
Unknown Affiliation
Evans, Ceri
Unknown Affiliation
Khanijau, Aakash
Unknown Affiliation
Romaine, Sam T.
Unknown Affiliation
Tsolia, Maria N.
Unknown Affiliation
Eleftheriou, Irini
Unknown Affiliation
Spyridis, Nikos P.
Unknown Affiliation
Maritsi, Despoina N.
Unknown Affiliation
Rojo, Pablo
Unknown Affiliation
Epalza, Cristina
Unknown Affiliation
Kuijpers, T. W.
Unknown Affiliation
van Furth, Marceline Tutu
Unknown Affiliation
Pajkrt, Dasja
Unknown Affiliation
van Hensbroek, Michael Boele
Unknown Affiliation
Romani, Lorenza
Unknown Affiliation
de Luca, Maia
Unknown Affiliation
Chiurchiù, Sara
Unknown Affiliation
Moll, Henriëtte A.
Unknown Affiliation
Hagedoorn, Nienke N.
Unknown Affiliation
Dik, Willem Arnout
Unknown Affiliation
Zavadska, Dace
Unknown Affiliation
Rudzate, Aleksandra
Unknown Affiliation
Mommert-Tripon, Marine
Unknown Affiliation
Pokorn, Marko
Unknown Affiliation
Kolnik, Mojca
Unknown Affiliation
Avĉin, Tadej
Unknown Affiliation
Vincek, Katarina
Unknown Affiliation
van der Flier, Michiel
Unknown Affiliation
Vastert, Bas J.
Unknown Affiliation
Bont, Louis J.
Unknown Affiliation
Beudeker, Coco R.
Unknown Affiliation
Schlapbach, Luregn J.
Unknown Affiliation
Pósfay-Barbe, Klara Maria
Unknown Affiliation
Heininger, Ulrich
Unknown Affiliation
Kahlert, Christian R.
Unknown Affiliation
Riedel, Thomas
Unknown Affiliation
Berger, Christoph Tobias
Unknown Affiliation
Fink, Colin G.
Unknown Affiliation
Voice, Marie
Unknown Affiliation
Calvo-Bado, Leo A.
Unknown Affiliation
Steele, Michael
Unknown Affiliation
Taylor, Andrew Mayall
Unknown Affiliation
Zenz, Werner M.
Unknown Affiliation
Binder, Alexander
Unknown Affiliation
Kohlmaier, Benno
Unknown Affiliation
Kohlfürst, Daniela S.
Unknown Affiliation
Schweintzger, Nina Alexandra
Unknown Affiliation
Sagmeister, Manfred G.
Unknown Affiliation
Benesch, Martin
Unknown Affiliation
Eber, Ernst
Unknown Affiliation
von Both, Ulrich
Unknown Affiliation
Kolberg, Laura
Unknown Affiliation
Danhauser, Katharina
Unknown Affiliation
Hoffmann, Florian
Unknown Affiliation
Griese, Matthias
Unknown Affiliation
Feuchtinger, Tobias
Unknown Affiliation
Lurz, Eberhard
Unknown Affiliation
Reiter, Karl
Unknown Affiliation
Yeung, Shunmay M.
Unknown Affiliation
Bath, David
Unknown Affiliation
Fitchett, Elizabeth J.A.
Unknown Affiliation
Cresswell, Fiona Valarie
Unknown Affiliation
Usuf, Effua Abigail
Unknown Affiliation
Bojang, Kalifa A.
Unknown Affiliation
Roca, Anna
Unknown Affiliation
Sarr, Isatou
Unknown Affiliation
Statistics
Authors: 150
Affiliations: 3
Identifiers
Doi:
10.1186/s12910-023-00925-w
ISSN:
14726939
Research Areas
Maternal And Child Health
Study Design
Cross Sectional Study
Cohort Study
Study Approach
Qualitative
Quantitative
Mixed-methods
Participants Gender
Female