Pediatric biobanking: a pilot qualitative survey of practices, rules and researcher opinions in ten European countries

Elena Salvaterra; Roberto Giorda; Maria Teresa Bassi; Renato Borgatti; Lisbeth E. Knudsen; Andrea Martinuzzi; Maria Nobile; Uberto Pozzoli; Gian Paolo Ramelli; Gian Luigi Reni; Damiano Rivolta; Maria Antonia Stazi; Sandra Strazzer; Carel Thijs; Virgilia Toccaceli; Antonio Trabacca; Anna Carla Turconi; Sergio  Zanini; Claudio Zucca; Nereo Bresolin; Leonardo Lenzi

doi:10.1089/bio.2011.0037

Pediatric biobanking: a pilot qualitative survey of practices, rules and researcher opinions in ten European countries

Elena Salvaterra, Roberto Giorda, Maria Teresa Bassi, Renato Borgatti, Lisbeth E. Knudsen, Andrea Martinuzzi, Maria Nobile, Uberto Pozzoli, Gian Paolo Ramelli, Gian Luigi Reni, Damiano Rivolta, Maria Antonia Stazi, Sandra Strazzer, Carel Thijs, Virgilia Toccaceli, Antonio Trabacca, Anna Carla Turconi, Sergio Zanini, Claudio Zucca, Nereo BresolinLeonardo Lenzi

16 Citations (Scopus)

Abstract

Ethical, legal, and social issues related to the collection, storage, and use of biospecimens and data derived from children raise critical concerns in the international debate. So far, a number of studies have considered a variety of the individual issues crucial to pediatric biobanking such as decision making, privacy protection, minor recontact, and research withdrawal by focusing on theoretical or empirical perspectives. Our research attempted to analyze such issues in a comprehensive manner by exploring practices, rules, and researcher opinions regarding proxy consent, minor assent, specimens and data handling, and return of results as faced in 10 European countries. Because of the lack of comparative analyses of these topics, a pilot study was designed. Following a qualitative methodology, a questionnaire draft mostly including open-ended queries was developed, tested, and sent by e-mail to a selected group of researchers dealing with pediatric biobanking (n=57). Returned questionnaires (n=31) highlighted that the collection, storage, distribution, and use of biospecimens and data from children were widely practiced in the contacted laboratories. In most cases, pediatric biobanking was subjected to national or local regulations covering adult biobanks (n=26). Informed consent was generally given by parents or legal representatives (n=17). Children's opinions were frequently sought and taken into account (n=16). However, minors were usually not recontacted at the age of maturity to express their own choices (n=26). Based on the collected data, dedicated recommendations are needed to govern unique ethical and regulatory issues surrounding pediatric biobanking.

Original language	Danish
Journal	Biopreservation and Biobanking
Volume	10
Issue number	1
Pages (from-to)	29-36
ISSN	1947-5535
DOIs	https://doi.org/10.1089/bio.2011.0037
Publication status	Published - 1 Feb 2012

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Salvaterra, E., Giorda, R., Bassi, M. T., Borgatti, R., Knudsen, L. E., Martinuzzi, A., Nobile, M., Pozzoli, U., Ramelli, G. P., Reni, G. L., Rivolta, D., Stazi, M. A., Strazzer, S., Thijs, C., Toccaceli, V., Trabacca, A., Turconi, A. C., Zanini, S., Zucca, C., ... Lenzi, L. (2012). Pediatric biobanking: a pilot qualitative survey of practices, rules and researcher opinions in ten European countries. Biopreservation and Biobanking, 10(1), 29-36. https://doi.org/10.1089/bio.2011.0037

Salvaterra, E, Giorda, R, Bassi, MT, Borgatti, R, Knudsen, LE, Martinuzzi, A, Nobile, M, Pozzoli, U, Ramelli, GP, Reni, GL, Rivolta, D, Stazi, MA, Strazzer, S, Thijs, C, Toccaceli, V, Trabacca, A, Turconi, AC, Zanini, S, Zucca, C, Bresolin, N & Lenzi, L 2012, 'Pediatric biobanking: a pilot qualitative survey of practices, rules and researcher opinions in ten European countries', Biopreservation and Biobanking, vol. 10, no. 1, pp. 29-36. https://doi.org/10.1089/bio.2011.0037

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abstract = "Ethical, legal, and social issues related to the collection, storage, and use of biospecimens and data derived from children raise critical concerns in the international debate. So far, a number of studies have considered a variety of the individual issues crucial to pediatric biobanking such as decision making, privacy protection, minor recontact, and research withdrawal by focusing on theoretical or empirical perspectives. Our research attempted to analyze such issues in a comprehensive manner by exploring practices, rules, and researcher opinions regarding proxy consent, minor assent, specimens and data handling, and return of results as faced in 10 European countries. Because of the lack of comparative analyses of these topics, a pilot study was designed. Following a qualitative methodology, a questionnaire draft mostly including open-ended queries was developed, tested, and sent by e-mail to a selected group of researchers dealing with pediatric biobanking (n=57). Returned questionnaires (n=31) highlighted that the collection, storage, distribution, and use of biospecimens and data from children were widely practiced in the contacted laboratories. In most cases, pediatric biobanking was subjected to national or local regulations covering adult biobanks (n=26). Informed consent was generally given by parents or legal representatives (n=17). Children's opinions were frequently sought and taken into account (n=16). However, minors were usually not recontacted at the age of maturity to express their own choices (n=26). Based on the collected data, dedicated recommendations are needed to govern unique ethical and regulatory issues surrounding pediatric biobanking. ",

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AU - Knudsen, Lisbeth E.

AU - Martinuzzi, Andrea

AU - Nobile, Maria

AU - Pozzoli, Uberto

AU - Ramelli, Gian Paolo

AU - Reni, Gian Luigi

AU - Rivolta, Damiano

AU - Stazi, Maria Antonia

AU - Strazzer, Sandra

AU - Thijs, Carel

AU - Toccaceli, Virgilia

AU - Trabacca, Antonio

AU - Turconi, Anna Carla

AU - Zanini, Sergio

AU - Zucca, Claudio

AU - Bresolin, Nereo

AU - Lenzi, Leonardo

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