Kaye, Jane; Prictor, Megan --- "Dynamic Consent and biobanking: a means of fostering sustainability?" [2019] ELECD 476; in Minssen, Timo; Herrmann, R Janne; Schovsbo, Jens (eds), "Global Genes, Local Concerns" (Edward Elgar Publishing, 2019) 117

Book Title: Global Genes, Local Concerns

Editor(s): Minssen, Timo; Herrmann, R Janne; Schovsbo, Jens

Publisher: Edward Elgar Publishing

ISBN: 9781788116183

Section: Chapter 7

Section Title: Dynamic Consent and biobanking: a means of fostering sustainability?

Author(s): Kaye, Jane; Prictor, Megan

Number of pages: 13

Abstract/Description:

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.