Why HIV testing needs informed consent
In “Written consent for HIV testing: Time to stop perpetuating stigma,” the opening scenario involves a “confused and hard to rouse” patient. The authors describe a hospital policy that requires written consent as a barrier to medical care, and argue that the requirement of written consent is outdated and may perpetuate stigma. While we agree that written consent ought not to be required in all situations, we have serious concerns that the approach suggested may lead to the hollowing out of the essential principles of voluntary and informed consent thereby causing human rights violations and harm to people living with HIV.
In the scenario presented, regardless of the hospital policy, obtaining informed consent may take some time due to the patient’s condition. If the patient does not have capacity, a substitute decision maker (SDM) must be sought. Regardless of whether it is the patient or the SDM, the Public Health Agency of Canada (PHAC) makes clear that in the context of HIV, testing must be (i) confidential; (ii) accompanied by counselling; and (iii) conducted with voluntary and informed consent (the “3 Cs”). Informed consent requires, among other things, that the patient be properly informed of their right to refuse the test, and of the benefits and risks of taking or refusing the test.
If the authors were simply arguing that written consent should not be required but that the above approach must be followed when seeking verbal consent, we would not be writing this response. However, by contrasting a preferred “verbal consent” approach to the requirement for “a formal discussion regarding indications, risks and benefits, reportability [to public health authorities] of positive test results and the patient’s signature indicating their agreement,” they seem to be advocating for something much less than informed consent.
Moreover, the authors refer to a US Center for Disease Control and Prevention (CDC) document which, among other things, recommends routine HIV screening and that “[s]eparate written consent for HIV testing should not be required; general consent for medical care should be considered sufficient to encompass consent for HIV testing.”
It is clear that such an approach would not comply with law in Ontario, where voluntary and informed consent is required. As general consent for medical care is not sufficient consent for HIV testing, “routine” HIV testing in Ontario should only refer to routinely offering a test.
An approach to verbal consent for HIV testing must live up to the requirements enunciated above and be in line with human rights principles. Pre-test counselling must be suitable for the individual to make an informed decision about HIV testing and include the following:
- respect for the cultural, sexual and gender diversities of clients;
- right to decline the test;
- information regarding the benefits and risks of testing;
- limits of confidentiality, including public health reporting requirements and an explanation of the difference between nominal (name-based) and anonymous testing (person does not have to give their name);
- information about how the criminal law intersects with HIV;
- information about how HIV is transmitted and prevention methods;
- information about window periods and follow-up testing; and
- assessment of and preparation for patient’s post-test support needs.
Please note the inclusion of information regarding potential criminal law implications of living with HIV. Despite the authors’ comparisons, given social realities, HIV is not comparable to other communicable medical conditions. Diabetes is not reportable to public health authorities. Syphilis is curable, and as a result public health surveillance is time-limited. People living with HIV, however, remain subject to public health surveillance and vulnerable to criminal scrutiny throughout their lifetime. Such differences are vital to communicate to the patient and warrant a pre-test conversation that is different from that of other medical conditions. This approach does not increase stigma. It respects autonomy and upholds human rights.
Reducing barriers to HIV testing must not diminish the requirement of the proper implementation, as laid out above, of the 3C’s. By providing a supportive and enabling environment that respects and protects clients’ human rights, health care professionals can do much to reduce stigma surrounding an HIV diagnosis.
Amy Wah is a policy Lawyer at the HIV & AIDS Legal Clinic Ontario
Ryan Peck is Executive Director at the HIV & AIDS Legal Clinic Ontario
Sandra Ka Hon Chu is Director of Research and Advocacy at the Canadian HIV/AIDS Legal Network
Cécile Kazatchkine is a Senior Policy Analyst at the Canadian HIV/AIDS Legal Network