Ms. G complains of night sweats with a dry cough and diffuse lymphadenopathy for several months, and given Ms. G's history of IV drug use, the clinician feels HIV testing is warranted as part of the evaluation. When he introduces the HIV test, the clinician is also required to obtain informed written consent and to provide HIV counseling. While filling out the consent forms, the clinician and Ms. G review current understandings of HIV health and testing. This test process differs from what Ms. G has encountered with other tests, and she reasons that "any test this different is not for normal people." She is embarrassed to request the test. As a hardworking mother of three, she has a great deal of pride and does not want to be judged negatively because she requires the "deviant" HIV test.
THE BIOETHICS OF HIV
TESTING
In the 29 years since the beginning of the epidemic, HIV/AIDS has had a tremendous impact on the health, politics, culture, social structure, and economy of the United States. Whole communities have been permanently altered by this disease. An epidemic of this consequence requires an effective testing strategy, and the ethical concerns involved with formulating such a strategy are significant. As medical and public health professionals, PAs are sworn to promote health and well-being and, above all, to do no harm. The varied ways to obtain consent for HIV testing challenge this oath. This essay examines ethical concerns surrounding consent for HIV antibody testing and introduces the concept of HIV exceptionalism.
Since the 1990s, US HIV incidence rates have plateaued.1 In 2008, the CDC estimated that approximately 56,300 people are infected with HIV each year. States have varied policies surrounding HIV testing, and only some mandate informed written consent and counseling. Disappointed with the persistence of the HIV epidemic, the CDC has recommended changing HIV testing policy to enhance the numbers tested. These changes include removal of mandatory counseling and written consent2 in favor of an opt-out testing strategy. Such a strategy gives the medical provider permission to inform the patient that an HIV test is routine and will be performed unless the patient refuses or "opts out." Essentially, this testing strategy shifts the burden of responsibility from those who would choose to undergo the test to those who would refuse the test. Appreciating this statement in depth is paramount to understanding potential ethical concerns.
Recently, the CDC reported that close to 40% of those in whom HIV is diagnosed receive an AIDS diagnosis within 1 year.3 Because the relationship between delayed treatment and increased morbidity and mortality is well-studied, this high percentage means that people infected with HIV are being identified too late. Furthermore, successful treatment of HIV results in an undetectable blood plasma HIV viral load, and there is a direct relationship between viral load and risk of transmission to others.4
A recent review evaluated United States physicians to determine what prevents them from offering HIV testing. Common issues were a burdensome consent process, lengthy pretest counseling, and inadequate reimbursement.5 Mandatory counseling and informed written consent appear to create a logistical barrier to testing. Unless this logistical barrier provides a greater benefit, in that it protects those at risk for HIV, it is not likely to be consistent with bioethical practice.
THE STORY OF HIV
EXCEPTIONALISM
Early in the HIV epidemic, US health and political officials confronted a complex landscape painted with fatal infection and already marginalized populations experiencing the brunt of the disease burden as well as a panicked public response. This mix of concerns forged a unique relationship between science and policy. While control and investigation of HIV were necessary, leaders were cautious not to conduct public health in a way that would further burden marginalized communities. Public health practice reflected concern that imperfect health policies would drive the epidemic underground.6 Keeping these events in mind and appreciating the stigma and discrimination faced by people living with HIV, we can understand why HIV was treated as an exceptional infection necessitating exceptional policies.
Although HIV exceptionalism had been practiced for years, it had no name until 1991.7 The term HIV exceptionalism signifies the tendency to treat legal, health, and other issues differently in the setting of HIV infection. Testing for the virus is a classic example. By the late 1980s, effective treatments were available, and effective testing was needed to facilitate access to these therapies. The benefits of early testing began to include improved health for those living with HIV and reduced HIV transmission.4 Still, an HIV diagnosis was not like a diagnosis of asthma or hypertension. In addition to being a serious infection without cure, HIV still invokes stigma and other cultural hardships.
However, the early days of the epidemic have passed. How much exceptionalism do we still need to protect those living with and at risk for HIV? At what point does exceptionalism help to engender the very stigma and discrimination towards HIV that it seeks to prevent? How clinicians navigate the testing and treatment of a disease helps to determine society's view of that disease. How a test is presented affects how a patient accepts not only the test but also the disease itself. Broadly put, how does HIV exceptionalism interfere with our ability to facilitate good health and do no harm?
Another reason physicians do not test is patient reluctance.5 Could the lengthy and exceptional test process be one reason for this? Many have argued that the unique requirements surrounding HIV testing make test takers feel deviant—that if they "opt in," they must have done something wrong. After all, what "normal" test requires this level of effort?
WHAT THE STUDIES SAY
A number of studies have suggested that when testing for a stigmatized disease moves to an opt-out model free from complex consent processes, acceptance rates increase. Among gynecology offices in a Canadian province, the HIV test acceptance rate within a group of opt-out testing clinics was an impressive 92.5% and superior to the opt-in rates throughout the province.8 A 10-year study in Scotland focusing on men who have sex with men (MSM) found a 49.7% to 57.8% increase in HIV testing rates during that period; this statistically significant increase coincided with a policy change to opt-out testing in genitourinary clinics.9
One study examined rates for opt-in versus opt-out testing in the setting of a fictitious stigmatized infection.10 Adults on a university campus who were told that testing was routine and would be conducted unless they refused it had a 95% acceptance rate. In contrast, the opt-in group had a testing rate of 12.5%. Interestingly, opt-out testing, whether for a stigmatized infection or not, produced higher testing rates when compared with opt-in testing.10