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Caulfield, Timothy; Murdoch, Blake --- "Biobanking and the consent problem" [2019] ELECD 479; in Minssen, Timo; Herrmann, R Janne; Schovsbo, Jens (eds), "Global Genes, Local Concerns" (Edward Elgar Publishing, 2019) 173

Book Title: Global Genes, Local Concerns

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

Publisher: Edward Elgar Publishing

ISBN: 9781788116183

Section: Chapter 10

Section Title: Biobanking and the consent problem

Author(s): Caulfield, Timothy; Murdoch, Blake

Number of pages: 12

Abstract/Description:

From a research perspective, interest in biobanking continues to intensify. Governments and industry have invested heavily in biobanks, as exemplified by initiatives such as the UK Biobank and the United States’ Precision Medicine Initiative. But despite this enthusiasm, many profound legal and ethical challenges remain unresolved. Indeed, there continue to be disagreements about how best to obtain consent and the degree and nature of control that research participants retain over donated samples and health information. Emerging social trends - including concerns about commercialization and perceived rights of continuing control (“biorights”) - seem likely to intensify these issues.