Opt-out HIV Testing: Moving Forward


Last month, the World Health Organization issued new recommendations for HIV testing (PDF), moving from the current "opt-in" HIV testing model to the "opt-out" HIV testing model. The basic difference between the two is that the "opt-out" testing strategy is provider initiated, meaning that the health care provider, usually a physician, informs the patient that he or she will be tested for HIV, discusses the risks and possible outcomes, and advises the patient she or he has the right to reject testing with no negative consequences to him or her for taking this decision. Unlike the "opt-in" strategy, where the patient must explicitly ask for the test, the new strategy also eliminates the need for a written informed consent form from the patient and comprehensive pre-test counseling.

Since testing became available for HIV, it has been subject to what is denominated "HIV exceptionalism." The constraints put on health care providers, regarding testing their patients for HIV, are not present for any other infectious agent. These constraints have multiple causes—amongst them the initial uncertainty of what testing positive for the virus meant, the fact that there were no possibilities for treatment available, and most importantly, the risk of stigma and discrimination faced by people who tested positive for HIV. The human rights violations of HIV-positive individuals that have been a hallmark of the HIV pandemic revealed that society's understanding of the connections between health and human rights was virtually non-existent; the work of HIV activists is one of the important reasons for the understanding we have today of the right to informed consent and the respect for patient autonomy.

The new guidelines effectively overturn some of the constraints previously put on health care providers, mainly in light of the epidemiological evidence that suggests that the number of people who are HIV-positive but don't know it, especially in developing countries, could be close to 80 percent. I have heard many activists react against this new testing strategy, chiefly on considerations that they may lead to new abuses of power by health care providers and the possible violations of human rights that may follow.

However, I disagree; I think the new testing guidelines are a timely change from the old scheme, and that they are based not only on epidemiological concerns and medical developments (such as the existence now of antiretroviral drugs), but on a better understanding of what protecting human rights means and what the role of health care providers is.

The epidemiological reasons for the change in strategy are quite clear, and so I will not discuss them here. Suffice it to say that on public health grounds this change has been called for since the end of the 80's (PDF), perhaps earlier. Amongst the reasons given, are the possibility of a better epidemiological tracking of the infection, the positive effects derived from people knowing their HIV serostatus, the epidemiological identification of interrupters of transmission, and so forth. This call has been repeated by public health specialists ever since. The increase in testing uptake by the population, triggered by the change in strategy, is well documented.

The ethical issues behind this change in strategy are especially interesting to me, mainly with regards to individual autonomy, its balance with public health concerns and the role of health care providers. For example, it is now extremely difficult for any person in a developing country to have an HIV test without having to undergo a "voluntary" counseling process. This is because the legal provisions in many health systems mandate that a complete counseling and signed informed consent be performed by the health care provider before testing the patient. Is this really necessary? Does everyone who wants to know their HIV serostatus have to discuss with the health care provider whether they engage or not in risky behaviors, and how to make them less risky? The idea of voluntary counseling many times assumes that there is a relationship of trust between the health care provider and the patient, when in fact in most developing countries patients are randomly assigned a health care provider by the public health system, which furthermore will probably change from one visit to the other.

Health care providers are an essential part of the "opt-in" strategy, since counseling, because of the time it takes and resources it needs, is usually offered after health care providers do a risk assessment of their patients. It is not routinely offered. Even more importantly, we know that counseling and testing uptake is dependent not only on the information given to the patient, but also on who the counselor is and how much time the counseling session takes. The risk assessment often reveals that the people to be tested are the health care provider's stereotypes of what individual is at risk (usually vulnerable and disadvantaged populations), and so many people who perhaps have been at risk but are afraid to ask for testing will not know their status for long periods of time. Routine offering of the test to every patient will dissipate the discrimination that is present when those tested are only the ones who the health care provider deems are at risk.

The main problems associated with the scaling up of provider initiated testing are the remaining social burdens and risks of being identified as HIV-positive. However, these problems must be addressed through the creation of policies that ensure patient confidentiality and the enactment of laws that protect persons from stigma and discrimination. It will be up to us, civil society, to keep pressuring our governments for more and better policies that protect rights and enhance the possibility to enjoy them. Policies that base their protection of people in the possibility of staying ignorant about their serostatus do not represent progressive ideals. A defense of people's rights not only entails the protection of these from outside interference, but also calls to people to be responsible and protect every one else's rights. Routine HIV testing is a good development in the struggle to stop HIV, and is consistent with furthering patients' autonomy and recognizing the connections between health and human rights.

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