The public interest, public goods, and third-party access to UK biobank

摘要

In 2007, the Ethics and Governance Council of the UK Biobank commissioned a Report on 'Concepts of Public Good and Pubic Interest in Access Policies'. This study considered the Biobank's role as a 'public good' in respect to supporting and promoting health throughout society. However, the conditions under which access by third parties to UK Biobank are justified in the public interest have not been well considered. In this article, I propose to analyse the conditions that should allow such access. My argument develops UK Biobank's function as a 'public good' and in terms of its responsibilities as a public health institution; both to protect the rights of the participants and in having a role in reinforcing public goals. Although these two tasks may conflict, it is possible that resolute opposition to some third-party access demands - if properly justified in terms of a public interest - will be damaging to, rather than protective of, participants' rights. To illustrate my argument, I consider the appropriate response to an extraordinary public emergency, such as a serious criminal investigation or disaster response, in terms of an ethical access policy.