Not only could the new system go a long way towards curbing the spread of HIV, but regularizing testing will hopefully help to remove some of the stigma that still exists, stemming from its connection with the gay male community and drug use. In a day and age when most new cases of HIV/AIDS are in black and Hispanic teenagers infected through heterosexual sex (1), testing people who think that the disease only happens to those people or who are afraid that being tested will single them out has the potential to really change the way we think of HIV infection.
So why is the ACLU skeptical of the new recommendations? Because to implement the increased testing rates, the new guidelines suggest doing away with two safeguards currently in place: written consent, and pre-test counseling. The new guidelines are for an opt-out system, meaning that in any clinical situation a practitioner informs the patient that the test will be administered unless they decline it. A close reading of the guidelines themselves reveals that the general consent to medical care that patients sign before treatment is to be considered consent. According to the guidelines:
“Patients should be informed orally or in writing that HIV testing will be performed unless they decline (opt-out screening). …the patient should be offered an opportunity to ask questions and decline testing. With such notification, consent for HIV testing should be incorporated into the patient’s general informed consent for medical care on the same basis as are other screening or diagnostic tests; a separate consent form for HIV testing is not recommended.” (2)The ACLU fears that this will lead to patients being tested without their knowledge or understanding, especially in emergency care situations. Widespread voluntary testing, they fear, could easily become mandatory testing.
The ACLU also fears the effects of doing away with pre-test counseling. In addition to losing a critical educational opportunity, there are fears that uninformed patients may tend more towards self-destructive behavior after receiving a positive result. According to the ACLU’s statement on the new guidelines, “Studies have shown that patients who are tested without consent are less likely to get the follow up care that is critical to maintaining good health.” (3) People who are unprepared to hear the results of their HIV test will likely have the same response.
The ACLU also addresses the issue of privacy. In theory, widespread voluntary testing does away with the need for anonymous testing by removing stigma. Especially in light of the state of New York’s increased collection of very personal data from HIV infected individuals, maintaining patient privacy and consent is a pertinent issue. The information that the state wants to collect pertains mostly to disease prevention – for example, which strain of HIV subtype a person presents, along with antiviral resistance data (4). This information is critical to disease prevention, but it is important that patients at the very least be informed of what information is being collected and how it will be used. Beyond reporting that the case of HIV exists, patients should be given the option to opt-out of having their information reported.
The CDC has come forward with a good faith effort to increase and normalize HIV testing, but I think it may be too early to do away with the safeguards of pre-test counseling and signed informed consent. They’ll only become unnecessary when the stigma of HIV has been erased. In the meantime, testing all the little old ladies in Alabama and the 13 year old children of politicians will go a long way towards normalizing HIV testing and reducing the stigma of being diagnosed as HIV positive.
1.New York Times: US Urges HIV Tests for Adults and Teenagers. Donald G. McNeil Jr. September 22, 2006
2.CDC’s New Guidelines, pg. 7
3.ACLU Says New CDC HIV Testing Recommendations Raise Health and Civil Liberties Concerns, September 21, 2006.
4.NYCLU Open Letter to New York Department of Health, September 18, 2006.