Data collected from HIV surveillance are crucial to guide public health interventions, planning, and prevention efforts. But developing countries face several challenges to implementing surveillance programs says a team of researchers from the US and the Democratic Republic of Congo.
One form of surveillance that can be particularly challenging to conduct, say Stuart Rennie (University of North Carolina at Chapel Hill, USA) and colleagues, is unlinked anonymous testing (UAT), which typically involves using blood that is discarded from specimens collected from patients for routine clinical purposes. UAT commonly does not involve obtaining consent from the person whose discarded blood is tested for HIV. The test is anonymized and unlinked from the person providing the sample and so the results cannot be reported back to patients.
The ethical justification for UAT, they say, includes the usefulness of the surveillance data together with the confidentiality protections afforded by anonymous, unlinked testing; the fact that the residual blood collected for other purposes would be discarded anyway and no one is harmed by its use; and the view that UAT takes place as part of a response to a public health emergency.
While the authors believe that UAT itself is "valuable and ethical," they argue that such surveillance "can be conducted in ethically questionable ways in certain circumstances." They give a series of examples from their own experience in the field, together with guidance on how to improve the conduct of UAT in such circumstances.
One example is that agencies conducting UAT in developing countries, they say, may sometimes collect residual blood from syphilis testing services that they temporarily set up to facilitate HIV surveillance. Such an approach is not in keeping with WHO/UNAIDS guidelines which state that UAT should only be conducted in settings where blood is regularly (not temporarily) collected for other purposes. "If syphilis testing is offered opportunistically to obtain blood for surveillance purposes," say Rennie and colleagues "then the primary purpose of the blood draw is not syphilis testing but surveillance, and consent should be obtained."
The authors outline three strategies to harmonize high quality HIV surveillance with international ethical standards. First, justifications for UAT should be reviewed in local contexts with local stakeholders. "The justifications," they say, "should be directly addressed in surveillance protocols, discussed with local ethics review boards, and communicated in community awareness meetings." Second, one ethical concern surrounding UAT—namely that those whose blood tests positive for HIV do not know their HIV status—could be addressed by providing confidential voluntary testing in close conjunction with UAT activities. Third, gaining local approval for HIV surveillance activities is important, but insufficient—"beyond approval," they say "lies the fundamental ethical requirement to strengthen in-country capacity in epidemiological surveillance, ethics, and health care systems."
- Rennie et al. Conducting Unlinked Anonymous HIV Surveillance in Developing Countries: Ethical, Epidemiological, and Public Health Concerns. PLoS Medicine, 2009; 6 (1): e4 DOI: 10.1371/journal.pmed.1000004
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