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

Elena Salvaterra, Roberto Giorda, Maria T. Bassi, Renato Borgatti, Lisbeth E. Knudsen, Andrea Martinuzzi, Maria Nobile, Uberto Pozzoli, Gian P. Ramelli, Gianl L. Reni, Damiano Rivolta, Maria A. Stazi, Sandra Strazzer, Carel Thijs, Virgilia Toccaceli, Antonio Trabacca, Anna C. Turconi, Sergio Zanini, Claudio Zucca, Nereo BresolinLeonardo Lenzi

Research output: Contribution to journalArticle

14 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 languageEnglish
Pages (from-to)29-36
Number of pages8
JournalBiopreservation and Biobanking
Volume10
Issue number1
DOIs
Publication statusPublished - Feb 1 2012

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Pediatrics
Research Personnel
Duty to Recontact
Specimen Handling
Minors
Data handling
Privacy
Postal Service
Proxy
Informed Consent
Research
Ethics
Decision Making
Parents
Decision making
Surveys and Questionnaires

ASJC Scopus subject areas

  • Biochemistry, Genetics and Molecular Biology(all)
  • Cell Biology
  • Medicine (miscellaneous)

Cite this

Pediatric biobanking : A pilot qualitative survey of practices, rules, and researcher opinions in ten European countries. / Salvaterra, Elena; Giorda, Roberto; Bassi, Maria T.; Borgatti, Renato; Knudsen, Lisbeth E.; Martinuzzi, Andrea; Nobile, Maria; Pozzoli, Uberto; Ramelli, Gian P.; Reni, Gianl L.; Rivolta, Damiano; Stazi, Maria A.; Strazzer, Sandra; Thijs, Carel; Toccaceli, Virgilia; Trabacca, Antonio; Turconi, Anna C.; Zanini, Sergio; Zucca, Claudio; Bresolin, Nereo; Lenzi, Leonardo.

In: Biopreservation and Biobanking, Vol. 10, No. 1, 01.02.2012, p. 29-36.

Research output: Contribution to journalArticle

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