Biobanking and consenting to research: a qualitative thematic analysis of young people’s perspectives in the North East of England
van der Velden FJS., Lim E., Gills L., Broadey J., Hayes L., Roberts E., Courtney J., Ball J., Herberg J., Galassini R., 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 J-R., 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., Nasher M., Hanson A., Linforth M., O’Riordan S., Ellis D., Deep A., Caro I., Shackley F., Bellini A., Gormley S., Neshat S., Scholefield BJ., Robbins C., Winmill H., Paulus SC., Pollard AJ., Anthony M., Hopton S., Miller D., Oliver Z., Beer S., Ward B., Shrestha S., Gurung M., Amatya P., Pokhrel B., Bijukchhe SM., Gautam MC., O’Reilly P., Shrestha S., Martinón-Torres F., Salas A., González FÁ., Gómez SA., Bello X., García MB., Viña FC., Carnota S., Curras-Tuala MJ., Urbieta AD., Suárez CD., Vidal IF., Vicente LG., Gómez-Carballa A., Rial JG., Iglesias PL., Mallah N., Martinón-Torres N., Sánchez JMM., Perez BM., Pardo-Seco J., Pischedda S., Vázquez SR., Calle IR., Rodríguez-Tenreiro C., Redondo-Collazo L., Fernández SS., Iglesias MV., Carrol ED., Cocklin E., Bracken A., Evans C., Khanijau A., Lenihan R., Lewis-Burke N., Newall K., Romaine S., Whitbread J., Tsolia M., Eleftheriou I., Spyridis N., Tambouratzi M., Maritsi D., Marmarinos A., Xagorari M., Panagiota L., Aggelos P., Karolina A., Charalambos G., Markos M., Michalis V., Ioanna S., Isaacs J., Bell K., Crulley S., Fabian D., Thomson E., Walia D., Miller C., Bell A., Shenton G., Price A., Treloar O., Thomas D., Rojo P., Epalza C., Villaverde S., Márquez S., Gijón M., Marchín F., Cabello L., Hernández I., Gutiérrez L., Manzanares Á., Kuijpers TW., van de Kuip M., van Furth M., van den Berg M., Biesbroek G., Verkuil F., van der Zee CW., Pajkrt D., van Hensbroek MB., Schonenberg D., Gruppen M., Nagelkerke S., Jansen MH., Goedschalckx I., Romani L., De Luca M., Chiurchiù S., Tripiciano C., Mercadante S., Vermont CL., Moll HA., Borensztajn DM., Hagedoorn NN., Tan C., Zachariasse J., Dik WA., Ching-Fen S., Zavadska D., Laivacuma S., Rudzate A., Stoldere D., Barzdina A., Barzdina E., Madelane M., Gravele D., Svile D., Basmaci R., Lachaume N., Bories P., Tkhayat RB., Chériaux L., Davoust J., Ong K-T., Cotillon M., de Groc T., Le S., Vergnault N., Sée H., Cohen L., de Tugny A., Danekova N., Mommert-Tripon M., Pokorn M., Kolnik M., Avčin T., Avramoska T., Bahovec N., Bogovič P., Kitanovski L., Nahtigal M., Papst L., Srovin TP., Strle F., Vincek K., van der Flier M., Tissing WJE., Asperen RM-V., Vastert SJ., Vijlbrief DC., Bont LJ., Wolfs TFW., Beudeker CR., Hulsmann SC., Agyeman PKA., Schlapbach L., Aebi C., Usman M., Schlüchter S., Wyss V., Schöbi N., Zimmermann E., Meier M., Weber K., Giannoni E., Stocker M., Posfay-Barbe KM., Heininger U., Bernhard-Stirnemann S., Niederer-Loher A., Kahlert C., Natalucci G., Relly C., Riedel T., Berger C., Fink C., Voice M., Calvo-Bado L., Steele M., Holden J., Taylor A., Calvez R., Davies C., Evans B., Stevens J., Matthews P., Billing K., Zenz W., Binder A., Kohlmaier B., Kohlfürst DS., Schweintzger NA., Zurl C., Hösele S., Leitner M., Pölz L., Rusu A., Rajic G., Stoiser B., Strempfl M., Sagmeister MG., Bauchinger S., Benesch M., Ceolotto A., Eber E., Gallistl S., Haidl H., Hauer A., Hude C., Kapper A., Keldorfer M., Löffler S., Niedrist T., Pilch H., Pfleger A., Pfurtscheller K., Rödl S., Skrabl-Baumgartner A., Strenger V., Wallner E., Tauchert MK., von Both U., Kolberg L., Schmied P., Mavridi I., Alba-Alejandre I., Danhauser K., Haas N., Hoffmann F., Griese M., Feuchtinger T., Juranek S., Kappler M., Lurz E., Maier E., Reiter K., Schoen C., Schroepf S., Yeung S., Dewez M., Bath D., Fitchett E., Cresswell F., Usuf E., Bojang K., Roca A., Sarr I., Ndure M.
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.