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Science and Engineering Ethics

, Volume 20, Issue 4, pp 1079–1093 | Cite as

‚Mirroring‘ the Ethics of Biobanking: What Analysis of Consent Documents Can Tell Us?

  • Serepkaite JurateEmail author
  • Valuckiene Zivile
  • Gefenas Eugenijus
Original Paper

Abstract

Biobanks have been recognized as a key research infrastructure and how to approach ethical questions has been a topic of discussion for at least a decade by now. This article explores the characteristics of donors’ participation in European biobanks as reflected in the consent documents of a selection of different biobanks from various European countries. The primary aim of this study is to understand how donors are informed about their participation in biobanking. Also the paper discusses what the most important thematic issues of information are to be given to the biobank participants and how this information should be presented in the consent documents. For these purposes, we analyse consent documents from 14 biobanks in 11 countries for six ethically relevant issues: (1) model of consent, (2) scope of future research, (3) access to medical data, (4) feedback to the participants, (5) consent withdrawal, and (6) role of research ethics committee. In order to compare different trends of informing donors of human biological material and medical data, we interpret the six analysed issues in the context of respect to donor’s autonomy paradigm. Although the results of the paper reflect the heterogeneity of biobank consent document policies applied in different European countries, we uncovered some trends and suggested several examples of good practices to balance the interests of the donors with those of the researchers and future patients.

Keywords

Europe Biobanking Consent documents Ethics 

Notes

Acknowledgments

This project was supported in part by Grant Number R25 TW007085 from the US National Institutes of Health (NIH) Fogarty International Center. Its contents are solely the responsibility of the authors and do not necessarily represent the official view of the Fogarty International Center or the NIH. We would like to thank the following people from the field of biobanking for sharing their informed consent documents and replying to our questions, without this work would not have been possible: Maria Grazia Diadone (Istituto dei Nazionale Tumori, Milan), Luciana Caenazzo (University Hospital of Padova), Peter Riegman (Erasmus MC, Rotterdam), Wenche Reed (Oslo University Hospital, Oslo), Peter Collins (University of Cambridge, Addenbrooks Hospital, Cambridge), Roberto Salgado (Institute Jules Bordet, Brussels), Manfred Schmitt (Frauenklinik MRI TU München, Munich), Fatima Carneiro (Serviço de Anatomia Patológica do H.S. João, Porto), Dominic Allen (Integrated Biobank of Luxemburg, Luxemburg), Signe Mezinska (University of Latvia), Aime Keis (University of Tartu). For valuable comments and suggestions we would also like to thank Jacqueline Hall (EORTC).

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Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • Serepkaite Jurate
    • 1
    Email author
  • Valuckiene Zivile
    • 2
  • Gefenas Eugenijus
    • 1
  1. 1.Department of Medical History and EthicsVilnius UniversityVilniusLithuania
  2. 2.Department of CardiologyHospital of Lithuanian, University of Health SciencesKaunasLithuania

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