UPDATE: Protecting your privacy around HIV

Sept 28, 1pm

Dr Réka Gustafson, Vancouver Coastal Health’s medical health officer, maintains that medical records are secure and is concerned about statements she considers “inaccurate” made at a Sept 27 press conference at which the BC Civil Liberties Association launched its new guides to patient rights with respect to HIV testing.

“I understood from what [Positive Living BC chair Ken Buchanan] was saying that entities outside the healthcare system would be given access to the records, including HIV tests — that is inaccurate,” she says.

Gustafson emphasizes that the Stop HIV/AIDS team was established to provide HIV testing and treatment to support positive people and prevent them from unknowingly infecting others.

“We’re always trying to find the balance between accessibility and confidentiality,” she says. “Every time a physician has access to records they can be audited. It’s important that good privacy protections are in place. Our chief privacy officer is a lawyer, and they spend a great deal of time ensuring privacy protections are in place.”

Vancouver Coastal Health spokesperson Anna Marie D’Angelo compares the system to a police computer system that records every person who logs in. “This idea that this information is floating around, anyone can get it, is absolutely wrong,” she says. “If there’s any problem or any doubt, you can check the system for who has had access to your personal information.

“Also, people in healthcare belong to professions and they have standards of conduct,” D’Angelo says. “Patient confidentiality is a very strong thing that is enforced, and there are severe consequences for breaching that if you are a professional.”

Gustafson believes that full information with respect to civil liberties should be available when a patient requests it, but she doesn’t think it should be a requirement before every HIV test.

“People with a specific interest, in this case civil liberties, are well intentioned,” she says, “but to assume it’s everyone else’s interest and everyone should be required to have a screening test to save their life is inappropriate and very misguided. Those things are barriers to testing, and if clinicians or a patient is in a hurry they may not get it. If this isn’t the conversation they don’t want to have to today, does this mean they shouldn’t have an HIV test?”

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Sept 27

The BC Civil Liberties Association (BCCLA) launched two new guides on HIV testing and patient rights, Sept 27, in what they describe as a “new environment of increased ‘routine’ testing.”

“The HIV Testing Handbook, that you can put in your bag, will tell you exactly what you need to know about changes to medical privacy that have occurred in the eHealth system,” says Micheal Vonn, policy director for the BCCLA. “But perhaps more importantly, they go on to tell you what actions you have available for protecting information in those systems. They will give you detailed information on how to mask your records in different records systems and take advantage of the important privacy protections that exist.”

The new guides summarize issues such as informed consent, non-nominal (no-name) testing, safeguarding medical privacy, limiting who can view medical information, and information about the criminal law and nondisclosure to sexual partners.

“The guides also explain different kinds of testing, including the options in British Columbia for non-nominal testing, which is a test that you can get without having your name attached to your laboratory record,” Vonn says. “We know, for example, that non-nominal testing is currently in some environments being actively discouraged. One of the ideas of this resource was to ensure that patients understood that they had a right to non-nominal testing in British Columbia if they so choose, and we explain how to exercise those rights.”

“Currently, the human rights approach to HIV testing in particular is under tremendous pressure, both internationally and domestically,” Vonn explains. “The tremendous enthusiasm, well-justified enthusiasm, for the benefits of new treatment options seen in programs that have intensified access to testing, for example, have sometimes, ironically, intensified pressure towards disregarding basic human rights in testing.”

In July, the director of BC’s Centre for Excellence in HIV/AIDS launched an initiative encouraging everyone to voluntarily get tested for HIV every time they go to a clinic or hospital for any examination. Dr Julio Montaner says the new testing push is needed to keep reducing the prevalence of HIV. The sooner people are diagnosed, the sooner they can begin treatment and therefore reduce the likelihood of HIV transmission, he says.

Ken Buchanan, chair of Positive Living BC, expressed concerned about Montaner’s proposal in June. He told Xtra such testing poses serious privacy concerns. “When they get tested, who gets to know that information?” he asks.

Buchanan says people need to know who will have access to the information placed on their medical records. As electronic health records become linked to other government databases, HIV status data could potentially be seen by people in ministries dealing with welfare, employment and other issues, he says. “It just spreads everywhere. Very scary.”

Buchanan reiterated his concerns at the BCCLA guides launch. “When it’s eHealth, you have to know that a huge number of people have access to your information,” he says.

“Getting testing for HIV is traumatic in itself, and a positive result is that much more of a shock to the system,” he continues. “To then find out people have access to that information is unbelievable.

“We really have to work hard allowing people to know what’s happening with their results,” he says. “It’s just basic fundamental rights, and far too often people are not told and then after the fact are finding about it too late; that information is out there and it’s very unfortunate.”

The guides also address the legal implications of disclosure. According to Canada’s Criminal Code, HIV-positive people can be charged with aggravated sexual assault if they fail to disclose their serostatus and have unprotected sex in such a way that there’s a significant risk of transmission considered capable of endangering someone’s life.

“Canada is one of the world leaders in prosecuting people for nondisclosure of HIV,” Vonn says. “So providing a little bit of a primer can help you understand that particular piece of the law, what your obligations are as an HIV-positive person to sexual partners under the criminal laws in Canada.”

Jesse Brown, executive director of YouthCO, says the information in the guides is largely unavailable elsewhere.

“As many young people have never had an HIV test before, we’re often asked questions regarding HIV testing and privacy and whether or not anonymous testing exists,” he says. “The resource accurately describes the right to non-nominal testing and takes a lot of pressure off our educators, and is a great tool for youth interested in the subject.”

The pocketbook and handbook will be distributed to AIDS service organizations and other healthcare providers across the province and are also available on the BCCLA website.