Evaluation of the unlinked anonymous prevalence monitoring programme for HIV in England and Wales: science, ethics and health policy.

BACKGROUND

The Unlinked Anonymous Prevalence Monitoring Programme for HIV in England and Wales was set up in 1989 and has been operational for over a decade. This paper describes a wide-ranging evaluation of the programme encompassing different perspectives and approaches: epidemiological, ethical, social scientific and economic.

MATERIAL AND METHODS

Epidemiological and ethical evaluation by critical review of the literature. Evaluation of the public's views on unlinked anonymous testing of blood by questions inserted into the Omnibus National Survey carried out by the Office for National Statistics. Evaluation of the views of planners of HIV/AIDS services by telephone questionnaire survey. Economic analysis by costing of the programme.

RESULTS

Epidemiologically the programme's results contribute to the jigsaw of knowledge about HIV. The ethical debate has shifted with time, and moral justification for the programme was more valid at its inception than now. The majority of the public was unaware of unlinked anonymous testing of blood for HIV, and 25-30% disagreed with the policy. Local planners of HIV services found the programme generally useful. There are concerns about the programme's hidden costs and funding.

CONCLUSIONS

To improve awareness and respect autonomy information leaflets, explaining opting out of testing, should be handed to all individuals at centres where the programme is operational. Data from the programme should be fed back quicker to local planners, and the programme's funding needs reappraisal. Further research on patients' views is indicated. Generic conclusions include the need for a definition of 'public health emergency', and establishment of a national healthcare ethics committee.