학술논문
Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England
Document Type
Report
Author
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; 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 Ãlvez; Gómez, Sonia Ares; Bello, Xabier; García, Mirian Ben; Viéa, Fernando Caamaéo; 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, Ãngela; 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; Avcin, Tadej; Avramoska, Tanja; Bahovec, Natalija; Bogovic, 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
Source
BMC Medical Ethics. July 5, 2023, Vol. 24 Issue 1
Subject
Language
English
ISSN
1472-6939
Abstract
Author(s): Fabian J. S. van der Velden[sup.1,2] , Emma Lim[sup.1,3,4] , Lily Gills[sup.5] , Jasmin Broadey[sup.6] , Louise Hayes[sup.3] , Eve Roberts[sup.4] , Jack Courtney[sup.5] , Joanne Ball[sup.5] , Jethro [...]
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. Keywords: Paediatrics, Biobank, Consent, Assent, Children and young people
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. Keywords: Paediatrics, Biobank, Consent, Assent, Children and young people