Written consent for HIV testing: Time to stop perpetuating stigma
A previously healthy 45-year-old man is admitted to hospital with a two-week history of worsening cough and shortness of breath. He is thought to have pneumonia and is started on antibiotics. The next morning his breathing becomes more laboured, and his health begins deteriorating rapidly.
As the medical team scrambles for answers, one voice asks, “Could this be an HIV-related pneumonia? Maybe we aren’t using the right antibiotics.” A quick check reveals no HIV testing on record, and the team wants to order a test. The hospital’s policy states that the blood cannot be sent to the lab without the patient signing a written consent form. As the medical team returns to the patient’s bedside, they find that he is now confused and hard to rouse.
A diagnosis of HIV was considered a death sentence for many years. However, advances in drug therapy over the past two decades have changed the clinical course of HIV dramatically. Patients with long-term access to drugs for HIV now have life expectancies nearly equal to people who do not have HIV.
Despite these improvements in treatment and outcomes, many institutional HIV testing policies remain unchanged, including the requirement for written consent. This policy is rooted in a time when stigmatization and discrimination against people who were HIV-positive was pervasive, so much so that the possibility of involuntary quarantine was under consideration. Activists who were concerned about the prospects of punitive HIV public health policies that would undermine fundamental human rights to privacy and autonomy argued that written, informed consent was needed to test for HIV. Their efforts drove an influential ethical framework that was published in 1986, as well as laws in the late 1980s which made written consent the standard.
However in 2006 and 2007, in response to newly developed drugs and recognition that written consent created barriers to testing, the Centers for Disease Control and Prevention and the Canadian Medical Association updated their recommendations to eliminate written informed consent and to routinize screening. Despite this, our experience, and that of many of our colleagues working across many Ontario health care institutions, is that written consent policies continue to be enforced in many institutions, formally or informally.
With life-prolonging therapies available, it begs the question: Are today’s institutional attitudes around HIV testing helping or hurting patients? Created with good intentions at one time, we believe these archaic policies now do more harm than good, and must be left behind.
HIV is a chronic, sexually transmitted infection (STI), but we do not treat it like other chronic diseases or STIs. Similar to diabetes, HIV requires lifelong medications to delay disease progression and prevent complications. Similar to syphilis, HIV is transmissible and reportable to public health, and has proven therapies with life-saving benefits. Why do we have different requirements for consent around testing for HIV than we do for these other diseases?
Human rights principles and protections remain at the heart of HIV testing today with the “3 Cs framework,” which advocates that testing be confidential, accompanied by counselling, and conducted with consent that is informed and voluntary. If HIV testing is treated the same as testing for other conditions, would that run against the 3C framework? Some may argue that true informed consent requires written consent—a formal discussion regarding indications, risks and benefits, reportability of positive test results, and the patient’s signature indicating their agreement. But in most front-line interactions, health care providers obtain informed verbal consent from patients for tests they are recommending, and we believe the same should be enough when it comes to consent for HIV testing.
Is the stigma around HIV itself reason enough to warrant signed consent?
There is substantial evidence that HIV is still associated with significant stigma, and this may drive patients to disengage from the health care system. However, requiring written consent may perpetuate rather than diminish stigma. It may reinforce a message to patients and the public that a diagnosis of HIV is insurmountable, and that it is a shameful label warranting different treatment. Adhering to antiquated policies around written consent for testing may appear to discredit the advances of medical treatments and their impact on the patients affected.
In the best interest of our medical practices and patients, it is time we question institutional practices and call them out for what they are: anachronistic and more harmful than helpful. We must work to normalize rather than stigmatize HIV. We should not perpetuate practices where HIV testing is treated differently than testing for other treatable chronic conditions with potentially serious life-threatening sequelae. We must create an atmosphere where the condition is normalized rather than stigmatized. Invariably, our practices have consequences for how HIV is perceived beyond the hospital wards, and we have a responsibility to change that perception together.
Arnav Agarwal is a graduate of McMaster University, and a second-year internal medicine resident at the University of Toronto. He is passionate about health advocacy, clinical epidemiology research and innovation in medical education.
Jonah Himelfarb is an internal medicine resident at the University of Toronto. He is passionate about writing, health advocacy, and medical education.
Originally from British Columbia, Jennifer Losie is currently a third-year internal medicine resident in Calgary. She has a particular interest in infectious diseases and HIV care.
Adrienne Chan is an associate professor with the Division of Infectious Diseases at the University of Toronto and a physician at the Anita Rachlis Clinic at Sunnybrook Health Sciences Centre.