“Mirroring” the Ethics of Biobanking: What Analysis of Consent Documents Can Tell Us?
Dec 5, 2014
Authors : Serepkaite Jurate, Valuckiene Zivile, Gefenas Eugenijus.
With kind permission from Springer Science+Business Media: Science and Engineering Ethics, “Mirroring‘ the Ethics of Biobanking: What Analysis of Consent Documents Can Tell Us?,Volume 20, Issue 4 , 2014, pp 1079-1093, (DOI 10.1007/s11948-013-9481-0)
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.