Date Published: January 20, 2009
Publisher: Public Library of Science
Author(s): Stuart Rennie, Abigail Norris Turner, Bavon Mupenda, Frieda Behets
Abstract: Stuart Rennie and colleagues argue that while unlinked anonymous HIV testing is valuable and ethical, such surveillance can be conducted in ethically questionable ways in certain circumstances.
Partial Text: Decades into the pandemic, the public health value of HIV surveillance is obvious. Surveillance is traditionally depicted as the “radar” or “eyes” of public health [1,2]. The World Health Organization (WHO) defines it as “…ongoing, systematic collection of health data, with analysis, evaluation and interpretation of these data and prompt dissemination of the findings to public health officials and others who need to know how to help shape public health intervention, planning and prevention” . Many organizations (WHO, the Joint United Nations Programme on HIV/AIDS [UNAIDS], the European Union, the United States Agency for International Development, and other bilateral donors) encourage, initiate, and fund HIV surveillance activities worldwide.
Surveying the scientific literature, the ethical justification for the practice of UAT appears to consist in (1) the greater epidemiological utility of “unconsented” testing through avoidance of selection and participation bias; (2) the confidentiality protections afforded by anonymous, unlinked testing; (3) the fact that the residual blood collected for other purposes would be discarded anyway and no one is harmed by its use; and (4) the view that UAT takes place as part of a response to a public health emergency .
Elsewhere, we have discussed “implementation ethics,” i.e., the ethical issues arising from the implementation of proven interventions or programs, as distinguished from research ethics or clinical ethics . UAT can be regarded as a proven program: it has been used successfully since 1990 in the United Kingdom, where 5 million tests were performed without a single breach in confidentiality . In the United States, the program is considered by public health professionals to have provided an invaluable window on the HIV epidemic .
Pregnant women are a special target group for HIV surveillance activities in the developing world. Access to women who attend antenatal clinics is usually easy, and pregnant women may be fairly representative of the sexually active adult population . Women participating in UAT at antenatal clinics may have access to diagnostic HIV testing, which can alleviate some of the ethical concerns surrounding the practice of UAT. However, access to antiretroviral drugs in developing countries is increasing through initiatives like PEPFAR and the Global Fund. Such developments raise ethical concerns similar to those encountered in the United States, namely that UAT without consent may be regarded as unethical in areas with access to HIV prophylaxis and treatment. This could lead to accusations of ethical double standards: while UAT among pregnant women has been discontinued on ethical grounds in the United States, international agencies still support UAT at antenatal clinics in developing countries where antiretroviral drugs are locally available.
In many settings in sub-Saharan Africa, relatively few persons with symptoms suggestive of sexually transmitted infections (STIs) seek care in public clinics . Since antibiotics can often be purchased without prescription, persons who have STIs may prefer self-treatment or consulting traditional healers or private physicians rather than treatment at public clinics. To increase participation of STI patients in public clinic–based HIV surveillance efforts, inducements (such as free care or new/additional medical services) are sometimes used. An anecdote raises broader concerns about this strategy. In a region where syphilis is common but testing is not systematically performed in public clinics, radio advertisements invited individuals to come to a public STI clinic for free testing. People flocked to the clinic. However, blood specimens were not transported to the central laboratory for testing due to deficient planning and follow-up between central and local public health staff. The frozen sera remained stored for several months at the local STI clinic. The clinic staff and patients were frustrated by the unavailability of the test results, and it is not known whether the residual sera were actually used for surveillance and ended up benefitting the communities in question.
Obtaining meaningful sentinel surveillance data representative of the sex worker populations requires knowledge of these women’s health-seeking behaviors and the institutions that provide sex workers with STI prevention and treatment services. However, sex workers, being a highly stigmatized group, may be reluctant to seek STI care at public clinics. Surveillance agencies attempting to gain access to this “hard-to-reach” population may enter into ethically murky territory. Two examples:
In our field research, local public health authorities were instructed to provide about 300 serum samples from sex workers for unlinked, anonymous surveillance in public health clinics. However, since few sex workers attend these clinics, an organization providing STI prevention and care services for sex workers was asked to collaborate in surveillance activities. The sex worker organization’s routine procedures included syphilis testing by rapid plasma reagin (RPR) every three months, except when women tested positive by RPR and were effectively treated, in which case they were retested six months later. This procedure conflicted with the local health authority’s desire to collect the required number of samples in a short time span. Local health authorities pressured the sex worker organization to perform blood draws with women not scheduled to have RPR tests according to routine procedures. The sex worker organization insisted that, according to their procedures and international guidelines, such blood collection required informed consent. However, the priorities of local public health authorities ultimately prevailed: blood was drawn for HIV surveillance without consent.In Bangladesh, there have been a number of negative incidents reported about HIV surveillance among sex workers. Unofficial HIV testing of sex workers led to the incarceration of sex workers through breaches of confidentiality. Dissemination of surveillance results by public health officials led to social welfare agencies and police forcefully evicting women from the surveyed brothels, spreading them through the city and compromising existing HIV prevention efforts .
Attempts to implement methodologically and ethically sound surveillance practices currently encounter a number of significant challenges that may be widespread and under-reported in the developing world. Of the 167 HIV surveillance systems for which data were collected worldwide, one analysis found only 47 of these programs (28%) adequate in terms of the frequency and timeliness of data collection, the appropriateness of the populations under surveillance, the consistency of sites, locations, and groups being measured over time, and the coverage and representativeness of those groups to measure adult HIV prevalence . Effective and ethically responsible disease surveillance is a dynamic, multi-stakeholder process involving a wide array of evolving factors, including: current state of the epidemic; condition of the local public health and medical systems; prevalence of adequately trained health staff; knowledge of especially vulnerable populations; maintenance of disease registries; capacity in local ethics review; availability of HIV testing, treatment, prevention, and support services; political climate; and traditional cultural values. Without significant, targeted surveillance investment and capacity building in developing countries, important data from the HIV/AIDS epidemic may fall below the “radar of public health” while ethical, epidemiological, and public health system problems continue to linger.