Letters

The ethics of unlinked anonymous testing

BMJ 2000; 320 doi: https://doi.org/10.1136/bmj.320.7244.1275/a (Published 06 May 2000) Cite this as: BMJ 2000;320:1275

Surveys provide essential information

  1. Angus Nicoll, unlinked anonymous programme manager (anicoll@phls.nhs.uk),
  2. Noel Gill, consultant epidemiologist,
  3. David Goldberg, deputy director,
  4. Catherine Peckham, professor of paediatric epidemiology
  1. PHLS Communicable Disease Surveillance Centre, London NW9 5EQ
  2. Scottish Centre for Infection and Environmental Health, Glasgow G3 7LN
  3. Institute of Child Health, University of London WC1N 1EH
  4. Hope Hospital, Salford M6 8HD
  5. Epidemiology Unit, London School of Hygiene and Tropical Medicine, London WC1E 7HT

    EDITOR—Kessel et al voice concerns about the ethics of unlinked anonymous surveys and the proportion of the public who seem to be aware of such surveys.1

    The need to use the unlinked anonymous technique for surveillance of HIV was evident once it was appreciated that data from diagnostic testing, or obtained after explicit consent for unlinked testing, inevitably produced biased estimates of the prevalence of HIV.2 The technique was adopted nationally in 1990 only after extensive consultation and general agreement that, with safeguards, it was legal and ethical.3 The surveys, which are overseen by the Department of Health, provide information that would otherwise not be available and is essential for planning and monitoring the control of the spread of HIV.4 They use blood that would eventually be discarded, which is left over after the completion of screening tests in genitourinary medicine and antenatal clinics. Before testing, every specimen is irreversibly unlinked from information that would identify the source individual. Hence infection status can never be traced back to a person. Essentially, the results represent groups in the community and not individuals.2 4

    Unlinked anonymous surveys in the United Kingdom started only after approval by local ethics committees, and refusals have been rare. Recently, these committees approved extension of the technique for surveillance of hepatitis A, B, and …

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