Users' and stakeholders' views of unlinked anonymous testing of blood: A research investigation of ethical, human rights and public health policy issues

Unlinked anonymous testing of blood for HIV was introduced in many countries in the 1980s and provides valuable public health information, but it does not usually involve gaining explicit informed consent. Although justified when introduced by the public health emergency of the time, it has been argued that the difficult balancing of public health needs with patients' rights needs re-examining.

This new research project, funded by the UK Economic and Social Research Council (Grant Ref RES-000-22-2096), involves social scientific research and comparative international policy analysis, to explore the ethical and human rights dimensions of this kind of blood testing in public health. The research runs from 2007 to 2008.

The aims of this project are to undertake: i) a structured questionnaire survey of 400 users of sexual health services in two UK clinics, exploring their attitudes towards unlinked anonymous testing of blood; ii) 20 face-to-face depth interviews of sexual health service users; iii) 5-10 depth interviews of key stakeholders and policy-makers in the UK; and iv) depth interviews with stakeholders in three other countries representing the spectrum of policies adopted around unlinked anonymous testing – USA, the Netherlands and Norway.

Presentation of the preliminary findings is intended to stimulate discussion about consent requirements for unlinked anonymous testing of blood, about the ethical and human rights basis of the UK policy, and the role that users' views can take in shaping epidemiological surveillance of this kind. Comparison of international findings will provide insights into different ethical frameworks in different countries.