Who Has Access to Your HIV Test Results?

Q: "I was wondering who is able to access Ontario Ministry of Health lab records. I did a series of tests for a needle-stick injury, and was recently told that I could be discriminated against for a job in public health or insurance. When I looked it up on-line, it appears that insurance companies can access lab records. Is this true?"
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Co-authored by Paul Taylor, Personal Health Navigator at Sunnybrook.

QUESTION: I was wondering who is able to access Ontario Ministry of Health lab records. I did a series of tests for a needle-stick injury, and was recently told that I could be discriminated against for a job in public health or insurance. When I looked it up online, it appears that insurance companies can access lab records. Is this true?

ANSWER: There are very specific rules governing who has access to the results of laboratory tests done in Ontario. The rules are there to safeguard your privacy -- and protect the health of others.

As you might expect, the physician or health-care provider who orders the test will get a copy of the results.

You can rest assured that insurance companies can't see your test results -- unless you give them permission to obtain a copy.

However, if an insurance firm asks you to submit to a blood test as condition for getting insurance and you agree, then the company will be able to learn what that test reveals.

So, generally speaking, only you and your health-care providers will know the content of your medical records.

But an extra level of public notification kicks in when there's a positive test for certain infectious diseases including HIV, the virus that causes AIDS.

If the test comes back positive -- indicating you're infected with HIV -- the lab is required by law to pass on your name, date of birth, gender and address, as well as the contact information of the attending physician or nurse, to the local Public Health unit, explains David Jensen, a spokesperson for the Ontario Ministry of Health and Long-Term Care.

Public Health is then responsible for notifying your sexual partner(s), and any needle-sharing companions, that they may have been exposed to HIV.

Medical experts long ago realized that these rules could scare some people away from being tested -- thereby foregoing treatment and potentially posing a continuing risk to others.

As a result, Ontario and other provinces also offer "anonymous" HIV tests at special clinics. The individuals undergoing these tests are given identification numbers, which are used to match up to their results. When the results turn out to be positive, the individuals are given counselling and they're encouraged to seek treatment.

There is a very good public health rationale for providing anonymous testing, says Dr. Philip Berger, Medical Director of the Inner City Health Program at St. Michael's Hospital in Toronto.

"It is better for them to be counselled and referred for treatment than not to have this information," says Dr. Berger. In other words, this is one way for frontline health care workers to connect directly with high-risk individuals who might otherwise avoid the medical system.

If the patients agree to treatment, they have to use their own names to have their doctor bills covered by the provincial health insurance plan. That means they are no longer anonymous and attempts would be made to contact their sexual and needle-sharing partners. But, in all likelihood, Public Health would still need the co-operation of the patient who would have to divulge the identities of those who might have been infected.

"It's important to emphasize that the vast majority of people being tested would be horrified at the notion of accidentally infecting somebody else. Most people want to have assistance in having their partners counselled," says Dr. Berger.

All these details about HIV disclosure may seem like a digression from your original question about the possibility of an insurance company gaining access to your test results.

But I hope this explanation illustrates that only certain authorized healthcare staff -- and not a private corporation -- can tap into your confidential medical results.

"You would have to sign an explicit consent for some third party [like an insurance company] to have access to this information," says Debra Grant, a spokesperson for the Office of the Information and Privacy Commissioner of Ontario.

Still, that doesn't provide you with much protection if you feel pressured into acknowledging you've been tested in the past, disclosing those previous results, or submitting to a brand new test. If you refuse their requests, you won't likely get the insurance policy you want. Lying to them can void the policy.

Of course, it could be argued that insurance companies have a reasonable right to know about your health before accepting you as a customer. HIV is, after all, a life-long infection requiring ongoing drug treatment.

But the insurance sector's interest in your risk profile doesn't necessarily stop at your HIV status.

Privacy advocates are concerned that insurance companies will want to pry ever deeper into our lives -- especially with new genetic screening tests being introduced on a regular basis. The ability of these tests to accurately predict your chances of getting a particular disease has not yet been determined. Some advocates fear genetic testing could unfairly penalize certain individuals.

In July, the Privacy Commissioner of Canada, Daniel Therrien, issued a policy statement in which he urged insurance companies to stop asking for access to the results of existing genetic tests.

"As science and technologies advance, protecting genetic privacy will become increasingly important and challenging," he said in a news release.

The insurance industry currently has a voluntary moratorium on asking applicants to undergo genetic tests. Mr. Therrien wants that moratorium to continue until the industry can clearly show that these tests are necessary and effective in assessing risk. "This would allow people to undergo genetic testing for various purposes without fear that the result may have a negative impact if they apply for insurance."

With this background in mind, let's return to your question. The simple answer is that insurance companies can't directly access your HIV test results without your prior knowledge or consent. But that's only part of the story. There are other reasons to be concerned about privacy. With advances in genetic testing, we may need new legal safeguards. Right now, there are no laws in Canada that specifically prohibit genetic discrimination.


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