Accès ouvert déclaré2023article
Biobanking and consenting to research: a qualitative thematic analysis of young people’s perspectives in the North East of England
Fabian van der Velden, Emma Lim, Lily Gills, Jasmin Broadey, Louise Hayes, Eve A. Roberts, Jack Courtney, Joanne Ball, Jethro Herberg, Rachel Galassini, Marieke Emonts, Michael Levin, Aubrey J. Cunnington, Myrsini Kaforou, Victoria Wright, Evangelos Bellos, Claire Broderick, Samuel Channon‐Wells, Samantha Cooray, Tisham De, Giselle D’Souza, Leire Estramiana Elorrieta, Diego Estrada‐Rivadeneyra, Dominic Habgood-Coote, Shea Hamilton, Heather Jackson, James Kavanagh, Mahdi Moradi Marjaneh, Samuel Nichols, Ruud Nijman, Harsita Patel, Ivana Pennisi, Oliver Powell, Ruth Reid, Priyen Shah, Ortensia Vito, Elizabeth Whittaker, Clare Wilson, Rebecca Womersley, Amina Abdulla, Sarah Darnell, Sobia Mustafa, Pantelis Georgiou, Jesus-Rodriguez Manzano, Nicolas Moser, Michael J. Carter, Shane M. Tibby, Jonathan B. Cohen, Francesca Davis, Julia Kenny, Paul Wellman, Marie White, Matthew Fish, A.R. Jennings, Manu Shankar‐Hari, Katy Fidler, Dan Agranoff, Julia Dudley, Vivien Richmond, Matthew Seal, Saul N. Faust, Dan Owen, Ruth Ensom, Sarah McKay, Diana Mondo, Mariya Shaji, Rachel Schranz, Prita Rughnani, Amutha Anpananthar, Susan Liebeschuetz, Anna Riddell, Divya Divakaran, Louise Han, Nosheen Khalid, Ivone Lancoma Malcolm, Jessica Schofield, Teresa Simagan, Mark Peters, Alasdair Bamford, Lauran O’Neill, Nazima Pathan, Esther Daubney, Debora White, Melissa Heightman, Sarah Eisen, Terry Segal, Lucy Wellings, Simon B. Drysdale, Nicole Branch, Lisa Hamzah, Heather Jarman, Lisa Capozzi, Emma Gardiner, Robert J. Moots, Magda Nasher, Anita Hanson, Michelle Linforth, Séan O’Riordan, Donna Ellis, Akash Deep, Iván Caro, Fiona Shackley, Arianna Bellini, Stuart Gormley, Samira Neshat, Barnaby J. Scholefield, Ceri Robbins, Helen Winmill, Stéphane Paulus, Andrew J. Pollard, Mark Anthony, Sarah Hopton, Danielle Miller, Zoe Oliver, Sally Beer, Bryony Ward, Shrijana Shrestha, Meeru Gurung, Puja Amatya, Bhishma Pokhrel, Sanjeev Man Bijukchhe, Madhav Chandra Gautam, Peter O’Reilly, Sonu Shrestha, Federico Martinón‐Torres, Antonio Salas, Fernando Álvez González, Sonia Ares Gómez, Xabier Bello, Mirian Ben García, Fernando Caamaño Viña, Sandra Carnota, María José Currás-Tuala, Ana Dacosta Urbieta, Carlos Durán Suárez, Isabel Ferreirós-Vidal, Luisa García Vicente, Alberto Gómez‐Carballa, José Gómez Rial, Pilar Leboráns Iglesias, Narmeen Mallah, José María Martinón Sánchez, Belén Mosquera Pérez, Jacobo Pardo‐Seco, Sara Pischedda, Sara Rey Vázquez, Irene Rivero‐Calle, Carmen Rodrı́guez-Tenreiro, Lorenzo Redondo-Collazo, Sonia Serén Fernández, Marisol Vilas Iglesias, Elizabeth Cocklin, Abbey Bracken, Ceri Evans, Aakash Khanijau, Rebecca Lenihan, Nadia Lewis-Burke, Karen Newall, Sam Romaine, Jennifer Whitbread, Μαρία Τσολιά, Irini Eleftheriou, Νikos Spyridis, Maria Tambouratzi, Despoina Maritsi, Antonios Marmarinos, Marietta Xagorari, Lourida Panagiota, Pefanis Aggelos, Akinosoglou Karolina, Gogos Charalambos, Maragos Markos, Voulgarelis Michalis, Stergiou Ioanna, John D. Isaacs, Kathryn Bell, Stephen Crulley, Daniel Fabián, Evelyn Thomson, Diane Walia, Caroline Miller, Ashley Bell, Geoff Shenton, David Price, Owen Treloar, Daisy Thomas, Pablo Rojo, Cristina Epalza, Serena Villaverde, Sonia Márquez, Manuel Gijón, Fátima Marchín, Laura Cabello, Irene Hernández, Lourdes Gutiérrez, Ángela Manzanares, Taco W. Kuijpers, Martijn van de Kuip, A. Marceline van Furth, J. Merlijn van den Berg, Giske Biesbroek, Floris Verkuil, Carlijn W. van der Zee, Dasja Pajkrt, Michaël Boele van Hensbroek, D. Schonenberg, Mariken Gruppen, Sietse Q. Nagelkerke, Machiel H. Jansen, Ines Goedschalckx, Lorenza Romani, Maia De Luca, Sara Chiurchiù, Constanza Tripiciano, Stefania Mercadante, Clementien L. Vermont, Henriëtte A. Moll, Dorine Borensztajn, Nienke N. Hagedoorn, Chantal Tan, Joany M. Zachariasse, Willem A. Dik, Ching‐Fen Shen, Dace Zavadska, Sniedze Laivacuma, Aleksandra Rudzate, Diana Stoldere, Arta Bārzdiņa, Elza Barzdina, Monta Madelāne, Dagne Grãvele, Dace Svile, Romain Basmaci, Noémie Lachaume, Pauline Bories, Raja Ben Tkhayat, Laura Chériaux, Juraté Davoust, Kim-Thanh Ong, Marie Cotillon, Thibault de Groc, Sébastien Lê, Nathalie Vergnault, Hélène See, Laure Cohen, Alice de Tugny, Névéna Danékova, Marine Mommert-Tripon, Marko Pokorn, Mojca Kolnik, Tadej Avčin, Tanja Avramoska, Natalija Bahovec, Petra Bogovič, Lidija Kitanovski, Mirijam Nahtigal, Lea Papst, Tina Plankar Srovin, Franc Strle, Katarina Vincek, Michiel van der Flier, Wim J. E. Tissing, Roelie M. Wösten‐van Asperen, Sebastiaan J. Vastert, Daniel C. Vijlbrief, Louis Bont, Tom F.W. Wolfs, Coco R. Beudeker, Sanne C. Hulsmann, Philipp Agyeman, Luregn J. Schlapbach, Christoph Aebi, Mariama Usman, Stefanie Schlüchter, Verena Wyss, Nina Schöbi, Elisa Zimmermann, Marion Meier, Kathrin Weber, Éric Giannoni, Martin Stocker, Klara M. Posfay‐Barbe, Ulrich Heininger, Sara Bernhard‐Stirnemann, Anita Niederer-Loher, Christian R. Kahlert, Giancarlo Natalucci, Christa Relly, Thomas Riedel, Christoph Berger, Colin G. Fink, Marie Voice, Leo Calvo‐Bado, Michael Steele, Jennifer Holden, Andrew J. Taylor, Ronan Calvez, Catherine Davies, B. J. K. Evans, Jake Stevens, Peter Matthews, Kyle Billing, Werner Zenz, Alexander Binder, Benno Kohlmaier, Daniel S. Kohlfürst, Nina A. Schweintzger, Christoph Zurl, Susanne Hösele, Manuel Leitner, Lena Pölz, Alexandra Rusu, Glorija Rajic, Bianca Stoiser, Martina Strempfl, Manfred G. Sagmeister, Sebastian Bauchinger, Martin Benesch, Astrid Ceolotto, Ernst Eber, Siegfried Gallistl, Harald Haidl, Almuthe Hauer, Christa Hude, Andreas Kapper, Markus Keldorfer, Sabine Löffler, Tobias Niedrist, Heidemarie Pilch, Andreas Pfleger, Klaus Pfurtscheller, Siegfried Rödl, Andrea Skrabl‐Baumgartner, Volker Strenger, Elmar Wallner, Maike K. Tauchert, Ulrich von Both, Laura Kolberg, Patricia Schmied, Ioanna Mavridi, Irene Alba‐Alejandre, Katharina Danhauser, Niklaus Haas, Florian Hoffmann, Matthias Griese, Tobias Feuchtinger, Sabrina Juranek, Matthias Kappler, Eberhard Lurz, Esther M. Maier, Karl Reiter, Carola Schoen, Sebastian Schroepf, Shunmay Yeung, Manuel Dewez, David Bath, Elizabeth Fitchett, Fiona V Cresswell, Effua Usuf, Kalifa Bojang, Anna Roca, Isatou Sarr, Momodou Ndure
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41Institutions associées
5Pays d’affiliation
Résumé fourni par la source
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.
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