Biobanking and consenting to research: a qualitative thematic analysis of young people’s perspectives in the North East of England
Authors: van der Velden Fabian J. S. , Lim Emma , Gills Lily , Broadey Jasmin , Hayes Louise , Roberts Eve , Courtney Jack , Ball Joanne , Herberg Jethro , Galassini Rachel , Emonts Marieke ,   DIAMONDS consortium, Levin Michael , Cunnington Aubrey , Kaforou Myrsini , Wright Victoria , Bellos Evangelos , Broderick Claire , Channon-Wells Samuel , Cooray Samantha , De Tisham , D’Souza Giselle , Elorrieta Leire Estramiana , Estrada-Rivadeneyra Diego , Habgood-Coote Dominic , Hamilton Shea , Jackson Heather , Kavanagh James , Marjaneh Mahdi Moradi , Nichols Samuel , Nijman Ruud , Patel Harsita , Pennisi Ivana , Powell Oliver , Reid Ruth , Shah Priyen , Vito Ortensia , Whittaker Elizabeth , Wilson Clare , Womersley Rebecca , Abdulla Amina , Darnell Sarah , Mustafa Sobia , Georgiou Pantelis , Manzano Jesus-Rodriguez , Moser Nicolas , Carter Michael , Tibby Shane , Cohen Jonathan , Davis Francesca , Kenny Julia , Wellman Paul , White Marie , Fish Matthew , Jennings Aislinn , Shankar-Hari Manu , Fidler Katy , Agranoff Dan , Dudley Julia , Richmond Vivien , Seal Matthew , Faust Saul , Owen Dan , Ensom Ruth , McKay Sarah , Mondo Diana , Shaji Mariya , Schranz Rachel , Rughnani Prita , Anpananthar Amutha , Liebeschuetz Susan , Riddell Anna , Divakaran Divya , Han Louise , Khalid Nosheen , Malcolm Ivone Lancoma , Schofield Jessica , Simagan Teresa , Peters Mark , Bamford Alasdair , O’Neill Lauran , Pathan Nazima , Daubney Esther , White Debora , Heightman Melissa , Eisen Sarah , Segal Terry , Wellings Lucy , Drysdale Simon B. , Branch Nicole , Hamzah Lisa , Jarman Heather , Nyirenda Maggie , Capozzi Lisa , Gardiner Emma , Moots Robert , Nasher Magda , Hanson Anita , Linforth Michelle , O’Riordan Sean , Ellis Donna , Deep Akash , Caro Ivan , Shackley Fiona , Bellini Arianna , Gormley Stuart , Neshat Samira , Scholefield Barnaby J. , Robbins Ceri , Winmill Helen , Paulus Stéphane C. , Pollard Andrew J. , Anthony Mark , Hopton Sarah , Miller Danielle , Oliver Zoe , Beer Sally , Ward Bryony , Shrestha Shrijana , Gurung Meeru , Amatya Puja , Pokhrel Bhishma , Bijukchhe Sanjeev Man , Gautam Madhav Chandra , O’Reilly Peter , Shrestha Sonu , Martinón-Torres Federico , Salas Antonio , González Fernando Álvez , Gómez Sonia Ares , Bello Xabier , García Mirian Ben , Viña Fernando Caamaño , Carnota Sandra , Curras-Tuala María José , Urbieta Ana Dacosta , Suárez Carlos Durán , Vidal Isabel Ferreiros , Vicente Luisa García , Gómez-Carballa Alberto , Rial Jose Gómez , Iglesias Pilar Leboráns , Mallah Narmeen , Martinón-Torres Nazareth , Sánchez José María Martinón , Perez Belén Mosquera , Pardo-Seco Jacobo , Pischedda Sara , Vázquez Sara Rey , Calle Irene Rivero , Rodríguez-Tenreiro Carmen , Redondo-Collazo Lorenzo , Fernández Sonia Serén , Iglesias Marisol Vilas , Carrol Enital D. , Cocklin Elizabeth , Bracken Abbey , Evans Ceri , Khanijau Aakash , Lenihan Rebecca , Lewis-Burke Nadia , Newall Karen , Romaine Sam , Whitbread Jennifer , Tsolia Maria , Eleftheriou Irini , Spyridis Nikos , Tambouratzi Maria , Maritsi Despoina , Marmarinos Antonios , Xagorari Marietta , Panagiota Lourida , Aggelos Pefanis , Karolina Akinosoglou , Charalambos Gogos , Markos Maragos , Michalis Voulgarelis , Ioanna Stergiou , Isaacs John , Bell Kathryn , Crulley Stephen , Fabian Daniel , Thomson Evelyn , Walia Diane , Miller Caroline , Bell Ashley , Shenton Geoff , Price Ashley , Treloar Owen , Thomas Daisy , Rojo Pablo , Epalza Cristina , Villaverde Serena , Márquez Sonia , Gijón Manuel , Marchín Fátima , Cabello Laura , Hernández Irene , Gutiérrez Lourdes , Manzanares Ángela , Kuijpers Taco W. , van de Kuip Martijn , van Furth Marceline , van den Berg Merlijn , Biesbroek Giske , Verkuil Floris , van der Zee Carlijn W. , Pajkrt Dasja , van Hensbroek Michael Boele , Schonenberg Dieneke , Gruppen Mariken , Nagelkerke Sietse , Jansen Machiel H. , Goedschalckx Ines , Romani Lorenza , De Luca Maia , Chiurchiù Sara , Tripiciano Constanza , Mercadante Stefania , Vermont Clementien L. , Moll Henriëtte A. , Borensztajn Dorine M. , Hagedoorn Nienke N. , Tan Chantal , Zachariasse Joany , Dik Willem A. , Ching-Fen Shen , Zavadska Dace , Laivacuma Sniedze , Rudzate Aleksandra , Stoldere Diana , Barzdina Arta , Barzdina Elza , Madelane Monta , Gravele Dagne , Svile Dace , Basmaci Romain , Lachaume Noémie , Bories Pauline , Tkhayat Raja Ben , Chériaux Laura , Davoust Juraté , Ong Kim-Thanh , Cotillon Marie , de Groc Thibault , Le Sébastien , Vergnault Nathalie , Sée Hélène , Cohen Laure , de Tugny Alice , Danekova Nevena , Mommert-Tripon Marine , Pokorn Marko , Kolnik Mojca , Avčin Tadej , Avramoska Tanja , Bahovec Natalija , Bogovič Petra , Kitanovski Lidija , Nahtigal Mirijam , Papst Lea , Srovin Tina Plankar , Strle Franc , Vincek Katarina , van der Flier Michiel , Tissing Wim J. E. , Asperen Roelie MWösten-van , Vastert Sebastiaan J. , Vijlbrief Daniel C. , Bont Louis J. , Wolfs Tom F. W. , Beudeker Coco R. , Hulsmann Sanne C. , Agyeman Philipp K. A. , Schlapbach Luregn , Aebi Christoph , Usman Mariama , Schlüchter Stefanie , Wyss Verena , Schöbi Nina , Zimmermann Elisa , Meier Marion , Weber Kathrin , Giannoni Eric , Stocker Martin , Posfay-Barbe Klara M. , Heininger Ulrich , Bernhard-Stirnemann Sara , Niederer-Loher Anita , Kahlert Christian , Natalucci Giancarlo , Relly Christa , Riedel Thomas , Berger Christoph , Fink Colin , Voice Marie , Calvo-Bado Leo , Steele Michael , Holden Jennifer , Taylor Andrew , Calvez Ronan , Davies Catherine , Evans Benjamin , Stevens Jake , Matthews Peter , Billing Kyle , Zenz Werner , Binder Alexander , Kohlmaier Benno , Kohlfürst Daniel S. , Schweintzger Nina A. , Zurl Christoph , Hösele Susanne , Leitner Manuel , Pölz Lena , Rusu Alexandra , Rajic Glorija , Stoiser Bianca , Strempfl Martina , Sagmeister Manfred G. , Bauchinger Sebastian , Benesch Martin , Ceolotto Astrid , Eber Ernst , Gallistl Siegfried , Haidl Harald , Hauer Almuthe , Hude Christa , Kapper Andreas , Keldorfer Markus , Löffler Sabine , Niedrist Tobias , Pilch Heidemarie , Pfleger Andreas , Pfurtscheller Klaus , Rödl Siegfried , Skrabl-Baumgartner Andrea , Strenger Volker , Wallner Elmar , Tauchert Maike K. , von Both Ulrich , Kolberg Laura , Schmied Patricia , Mavridi Ioanna , Alba-Alejandre Irene , Danhauser Katharina , Haas Niklaus , Hoffmann Florian , Griese Matthias , Feuchtinger Tobias , Juranek Sabrina , Kappler Matthias , Lurz Eberhard , Maier Esther , Reiter Karl , Schoen Carola , Schroepf Sebastian , Yeung Shunmay , Dewez Manuel , Bath David , Fitchett Elizabeth , Cresswell Fiona , Usuf Effua , Bojang Kalifa , Roca Anna , Sarr Isatou , Ndure Momodou 
Published: July 2023

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.