Human Rights Groups: STOP HIV/AIDS Project Fails to Inform Patients of New Privacy Risks

On the eve of World AIDS Day, the BC Civil Liberties Association (BCCLA) and the Canadian HIV/AIDS Legal Network are calling on the STOP HIV/AIDS Project to stop disseminating misleading information about privacy protection in its public campaign to encourage everyone to have an HIV test. The project’s aim is to expand HIV testing and treatment, but the marketing around it fails to say who has access to HIV test results and thus fails to provide a proper basis for informed consent to testing.

“The STOP Project slogan is “It’s Different Now,”” said Micheal Vonn, Policy Director of the BCCLA. “The difference being held out is the good news about improvements in HIV treatment. But STOP Project proponents do not disclose recent erosions in the confidentiality of patient medical information. The STOP Project tells people that “privacy is protected.” This flies in the face of the Canadian Medical Association Policy guidelines for doctors which clearly state that “patients should be informed that the treating physician cannot control access and guarantee confidentiality for an electronic health record system.” The aims of the STOP Project are laudable, but it isn’t giving people full information about the lack of medical privacy under e-health regimes and we’d like them to stop the misinformation.”

HIV blood tests in BC are recorded in a new centralized electronic health record system. This database is meant to be widely accessible to health care providers and others in BC. The only way patients can control access to their medical information in the system is to apply for a disclosure directive. This is supposed to limit those able to view the patient’s record to those health care providers that the patient provides with a PIN. But government has made a deliberate choice to not have an “opt-in” to disclosure rule, but instead an “opt-out” of disclosure rule and then not tell people about their opt-out rights. Most people are unaware that they must now take active steps to safeguard their private medical information.

“It would be profoundly cynical to use the good news of advances in HIV treatment to turn back the clock on human rights”, said Richard Elliott, Executive Director of the Canadian HIV/AIDS Legal Network. “Conducting any medical procedure on people without informed consent is illegal. Adopting policies and practices such as routine testing for HIV may lead more people to getting tested, but also rides roughshod over the need to ensure informed consent to testing. It violates basic human rights, it’s

unethical medical practice and it’s ultimately counterproductive. HIV may be “different now,” but testing positive for HIV is hardly “routine” and the requirement to ensure informed consent is no different.”


Micheal Vonn, BCCLA Policy Director, 604-630-9753 Janet Butler-McPhee, Canadian HIV/AIDS Legal Network, 416-595-1666 ext. 228

Link to instructions on how to implement a disclosure directive in BC: