Global Genes, Local Concerns
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Global Genes, Local Concerns

Legal, Ethical, and Scientific Challenges in International Biobanking

Edited by Timo Minssen, Janne R Herrmann and Jens Schovsbo

With interdisciplinary chapters written by lawyers, sociologists, doctors and biobank practitioners, Global Genes, Local Concerns identifies and discusses the most pressing issues in contemporary biobanking. Addressing pressing questions such as how do national biobanks best contribute to translational research and how could academic and industrial exploitation, ownership and IPR issues be addressed and facilitated, this book contributes to the continued development of international biobanking by highlighting and analysing the complexities in this important area of research.
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Chapter 8: Generating trust in biobanks within the context of commercialization: can Dynamic Consent overcome trust challenges?

Esther van Zimmeren

Abstract

Various authors have argued that “public trust” in biobanks is critical for building, maintaining, and sustaining biobanks. However, trust is a complex, multilevel concept. Moreover, biobanks encounter various challenges in responding to the expectations of different stakeholders, which potentially have an impact on their perception of the biobanks’ trustworthiness. For instance, empirical studies have shown that commercialization is a delicate issue in terms of their trustworthiness. This could mean that one scandal in the field may distort carefully constructed policies for generating trust. Apart from advanced governance mechanisms, transparency on issues related to commercialization is, hence, very important. The chapter explores whether “dynamic consent” could be an effective tool to increase transparency, in general and more specifically regarding commercialization issues, as it allows for dynamic follow up, information, discussion and engagement. It starts with a short description of the trust literature and tailors some important concepts from that literature to the discussion on biobanks before delving into more detail into the literature on biobanks and trust and the potential role of dynamic consent for generating trust.

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