Biobanking and the consent problem [BOOK CHAPTER]

Biobanking and the consent problem [BOOK CHAPTER]
Timothy Caulfield, Blake Murdoch
Law 2019 – Chapter 10, 26 April 2019; pp 173–184
Abstract
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.