HIV reporting by name necessary, but confidentiality key

Ethics Forum. Jan. 2/9, 2006.

Scenario: Does HIV name-based reporting pose ethical risks for physicians?

Illinois is joining the majority of states that have established name-based reporting for HIV. How can infectious disease doctors persuade patients to be tested? How can name-based testing be made compatible with patient confidentiality?

Reply:

As an intern at San Francisco General Hospital, which had the first AIDS-specific hospital ward in the United States, I was quickly thrust into the midst of the HIV/AIDS epidemic. It did not take long to realize that my patients were attempting not only to survive an insidious disease but also to prevent disclosure of their status.

While there was no hard evidence that state or federal governments had compromised case confidentiality, the streets were full of stories of people with AIDS who were subjected to losing insurance benefits, fired from their jobs, turned away by health care providers, ostracized by those closest to them, or arrested.

My focus was on the care of my patients. But as a clinical novice witnessing the spread of a disease that seemed to be exploding around him, I bought in to the mindset that the government couldn't be trusted.

Upon returning to Chicago's South Side where I took up my clinical practice, I joined with others in 1998 to orchestrate an impassioned resistance to state efforts to mandate HIV reporting by name. Given this country's history of racial discrimination in public health initiatives (Tuskegee jumps to mind), I could relate as an African-American to my patients' wariness in placing their trust in a government bureaucracy.