New HIV guidelines fail to ensure consent and counseling for patients

September 28, 2006 by Tamara Lange, San Jose Mercury News

The Centers for Disease Control and Prevention is right to want to increase the number of people tested for HIV. But the revised HIV testing recommendations released last week and endorsed by the San Jose Mercury News editorial board Monday eliminate the safeguards that ensure testing is voluntary and informed.

The CDC previously recommended that doctors obtain a patient's written consent to be tested for HIV and provide both pre- and post-test counseling about how to prevent transmission. The new recommendations eliminate these protections, threatening the health and privacy of all Californians.

While diagnosis soon after infection can add to life expectancy, that's only for the people who get treatment after testing positive. Studies have shown that patients tested without consent are less likely to get the follow-up care critical to maintaining good health.

Similarly, because HIV-positive adolescents are at greater risk of self-destructive behavior without adequate counseling, the new recommendations may jeopardize teen health and actually hamper efforts to prevent transmission of HIV.

Many people are still in the dark about basic facts regarding HIV transmission. A recent survey found that almost 25 percent of Americans wrongly believe that you can get HIV from sharing a glass of water. Getting rid of pre-test prevention counseling means losing a critical opportunity to educate people about HIV.

The CDC's new recommendations also raise serious privacy concerns. California is in the process of implementing new laws that will require doctors to report the names of those who test positive for HIV; it may also require reporting of private information, such as drug use and sexual history.

Informed consent means telling patients not only that there are dramatic health benefits to being tested early, but also that the names of individuals who test positive must be reported to the government. It also means telling them that anonymous testing (in which the individual's name is not reported) is available in California.

An HIV diagnosis is a significant life-changing event. Of course, it involves having to learn to live with a life-threatening disease. But it also means facing the continuing stigma and discrimination directed at people who are HIV-positive. Twenty-five years into the epidemic, people living with HIV and AIDS continue to lose their jobs and housing. If the government is going to invade people's privacy by collecting their names and personal information, patients have the right to know about their alternatives before they consent to testing.

While forgoing written consent and pre-test counseling may seem appealing to medical professionals on the surface, the reality is that doctors who follow the CDC recommendations take the risk that they will later have to prove -- with no written record -- that a patient consented to an HIV test after being informed fully of the implications.

Many of the populations that need increased testing the most may already be mistrustful of public-health efforts. And even those who trust the government and their doctors are likely to fear them if they are tested without their knowledge or fully informed consent.

Written consent and counseling need not be barriers to testing. People will be better able to take care of themselves and one another if medical providers routinely offer testing and explain its benefits. When people can make informed decisions to protect their health, everyone wins.