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Mary Ann Liebert, Biopreservation and Biobanking, 1(10), p. 29-36

DOI: 10.1089/bio.2011.0037

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Pediatric Biobanking: A Pilot Qualitative Survey of Practices, Rules, and Researcher Opinions in Ten European Countries

This paper is available in a repository.
This paper is available in a repository.

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Abstract

on behalf of the Pediatric Biobank ELSI Working Group { 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 con-sidered 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 1