Making HIV Tests Routine Threatens Patients’ Privacy

June 9, 2007 • Commentary
This article appeared in the Chicago Sun‐​Times on June 9, 2007.

The lure of federal dollars has prompted Illinois lawmakers to pass one and consider still another ill‐​advised law to make HIV testing routine. But there’s nothing routine about testing for HIV, and efforts to make it more common show little concern for the frankness of the doctor‐​patient relationship, or the insidious threats to patient privacy.

Rep. LaShawn K. Ford (D‐​Chicago) introduced a bill that passed the House last month and the Senate on Sept. 1 that partially repeals the Illinois AIDS Confidentiality Act, eliminating requirements for pretest counseling and written consent and making HIV testing, in Ford’s words, part of a person’s “routine physical.”

A bill introduced by Rep. Mary Flowers is even worse. The bill, now in the House Rules Committee, would require children in high‐​risk age groups to be tested for HIV as part of their routine school health examinations unless their parents explicitly object.

Ford and Flowers want to make HIV testing for those ages 13 to 64 as routine as checking someone’s blood pressure. The effort may at least in part be driven by the new federal Ryan White Grant Program, which requires states to provide the names of HIV patients — not just anonymous numbers — to receive federal funding for state HIV programs.

No medical care should be so routine that physicians are dissuaded from discussing with patients their individual needs and concerns. A patient should be tested for HIV only if a physician determines that it’s appropriate in view of the patient’s particular circumstances. Unnecessary tests are against the patient’s best interests, are likely to create mistrust and could discourage people who might actually need to be tested from seeking crucial medical care.

Furthermore, when doctors decide testing is appropriate, their patients — or, in the case of children, their parents — need to know about the various testing options, the chance of false positives, and the parties to whom the results will be disclosed. These are the sorts of things doctors discuss with their patients or their guardians during the informed consent process. The only logical reason to eliminate counseling and written consent is a fear that the knowledge learned might dissuade patients or parents from consenting in the first place.

The Illinois Legislature has assured the Chicago AIDS Foundation that confidentiality of test results will be assured, but how is that possible if the Ryan White program requires states to identify HIV/AIDS patients by name?

Loss of confidentiality is a real concern. Reports of HIV patients suing their doctors for inadvertent disclosure to insurance companies and employers are not uncommon. That the disclosures are illegal is beside the point. The sheer volume of data that doctors need to report to state and federal agencies all but ensures such blunders will occur.

The easiest way for states to get as many names as possible to meet the new Ryan White requirements is to make HIV test results a routine entry in patients’ charts — whether patients understand the consequences of being tested or not, whether physicians believe the tests are necessary or not, and whether such testing is even in a patient’s best interest or not.

HIV tests are not like routine blood pressure checks, however. People don’t worry about their blood pressure levels becoming public or about being stigmatized for them. State governments introduced HIV/AIDS confidentiality rules and anonymous testing policies to reassure patients that their privacy would be respected. Eliminating privacy protections and testing routinely could cause those who most need to be tested to avoid medical treatment altogether.

It’s bad enough for a state government to decide it wants to protect people from themselves by making medical choices for them. It’s all the worse when that supposedly well‐​intentioned paternalism is really a ploy to dip into federal coffers.

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