Global Genes, Local Concerns
Show Less

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.
Buy Book in Print
Show Summary Details
You do not have access to this content

Chapter 7: Dynamic Consent and biobanking: a means of fostering sustainability?

Jane Kaye and Megan Prictor

Abstract

Biobanks are rich repositories of biological materials (such as DNA) and other health and demographic data, often collected over a long period, that can be used for a variety of research purposes to improve the health of individuals and populations. It is important that the value of biobanks is maximized, but at this point in time, there are a number of challenges to achieving this. There are continued debates over the most appropriate mode of gaining consent from people who contribute tissue samples and data to biobanks, that will uphold high ethical standards and enable autonomous decisionmaking. As in other fields, there are changing legal and regulatory frameworks that can have significant implications for biobank management. There are also increasing concerns as to whether biobanks are achieving maximum usage and what the longer-term sustainability plans of maintaining these repositories should be. In this chapter, we outline some of the risks facing biobanks, using examples drawn from a range of international settings. We suggest that the concept of “Dynamic Consent,” a digital platform for engaging research participants, has the capacity to ensure a more engaged and informed cohort of participants, that might in turn address many of the legal and sustainability challenges currently facing biobanks. In this chapter, current uses of Dynamic Consent platforms in biobanking research in the UK, continental Europe, and the USA, and outline considerations for future application and evaluation of this tool to help enhance the relevance, ethical operation, sustainability, and interoperability of biobanks, are examined.

You are not authenticated to view the full text of this chapter or article.

Elgaronline requires a subscription or purchase to access the full text of books or journals. Please login through your library system or with your personal username and password on the homepage.

Non-subscribers can freely search the site, view abstracts/ extracts and download selected front matter and introductory chapters for personal use.

Your library may not have purchased all subject areas. If you are authenticated and think you should have access to this title, please contact your librarian.


Further information

or login to access all content.