ABSTRACT
This chapter focuses on two high profile, large biobanks/databases in the UK: the UK Biobank, instigated by the Wellcome Trust, which has a primary ‘medical’ (health) focus; and the police national DNA database (NDNAD) which has a primary ‘non-medical’ goal of tackling crime. Much of the emergent UK regulatory framework governing biobanks and databases has been catalysed because of these two key collections. Biobanks have also been the focus of a significant amount of public engagement, mostly from patient groups, and genetic and civil liberties watchdogs. The chapter is divided into two sections. Section One provides an overview of the typologies and remits (aims and objectives) of different types of biobanks and databases. Section Two focuses specifically on the Wellcome biobank and the NDNAD. In providing these narratives, the chapter gives an overview of some of the
many publics who are engaging with the issue of biobanks and databases in the public sphere, identifying the key ways in which they frame, or set the stakes of, the debate. Because biobanks are a means to an end, publics identified in this cast list are often commenting on the actual and potential end use(s) or goal(s), and associated risks and benefits, of the biobanks and databases – for example disease cures, treatments and prevention; stigma and discrimination, ownership and rights – as much they comment on the terms (means) of the biobank/database itself. These are of course connected as means dictate ends; for example, whether a database is commercially owned; or the terms of informed consent given for use of sample data. A number of organised public debates have taken place relating to the UK
Biobank and NDNAD; run by Wellcome itself, by the UK Biobank Ethics and Governance Council, and also by civil society groups such as Progress Educational Trust. Besides the lobby groups and academics who turn up to these public events, however, the actual engagement by genuine ‘members of the public’ remains relatively small. There is also ‘self-starting’ public engagement in the form of various types of cultural, and bio-consumer, behaviour, catalysed by the broad range of biobanks and databases and the uses to which these are being put. A large amount of grassroots public engagement has been
catalysed by the NDNAD, including the engagement of a number of race, children and civil liberties charities, organisations and individuals who have mobilised to express opposition and concern. The UK Biobank is also catalysing engagement by the ‘general public’ as potential sample donors.
