Introduction

In this chapter we describe unlinked anonymous blood testing for human immunodeficiency virus (HIV) and other diseases, and examine the ethical issues associated with this system of seroprevalence testing. We argue that the views of participants have been missing from ethical debates about seroprevalence monitoring, and propose that the issue of informed consent for inclusion in such programmes should be revisited. We introduce our own current scientific research which explores this issue.

A discussion about the ethics of unlinked anonymous testing of blood should be placed within wider contemporary debates in the arenas of public health, clinical medicine and medical research. The first such debate focuses on the balance between individuals’ rights and the appropriate role of government in infringing on those rights for broader public health interests or concerns. Connected to this is the extent to which the traditional doctor–patient relationship extends to public health, and the degree of public health paternalism that is acceptable. The second debate centres on the boundaries of informed consent in medical research, particularly in relation to the use of human tissue, and the extent to which information contained in medical records can be utilised for research purposes.

In relation to the first debate, there has been strong criticism of government in recent times, particularly in the mass media, for its ‘nanny state’ approach to interventions in, for example, the areas of smoking, alcohol and diet. More recently the notion of ‘stewardship’ (Jochelson, 2005) in public health rejects these negative associations, and advocates that government should have a role to play in protecting the health of citizens, preventing them from harming themselves or others, and promoting healthy behaviour. In this view, public health interventions should not be thought of as unwanted restrictions imposed by a ‘nanny’ on powerless children, but as actions that favour both individuals and society more widely, as prescribed by a ‘steward’ administering and protecting citizens’ interests.