On December 15th, Patricia Sweeney and Leonard Ortmann from the Centers for Disease Control and Prevention presented a talk at the Ethics Center's monthly clinical seminar. Their topic was on the ethical dimensions of public health surveillance data in improving HIV care and reducing transmission. Because I'm not a specialist in this area, I was surprised to learn that of the 1.2 million Americans with HIV, only a third receive the standard of care treatment, whose centerpiece is anti-retroviral therapy (ART). The other two-thirds of the HIV population either do not or cannot avail themselves of ART, or don't know they're carrying the virus. This latter figure is heartbreaking in that ART is a monumental discovery in treating HIV--transforming it from the tragically lethal disease it was decades ago to a chronic illness that now allows those afflicted a good quality life. Furthermore, ART reduces the viral load of HIV and thus reduces its risk of transmission. Clearly, it is a win-win intervention.
What Patricia and Leonard discussed was the extent to which new public health surveillance data--that, for instance, notifies physicians who are treating persons with HIV that their patient hasn't had a checkup in over 6 months--could appear nonthreatening. The history of HIV, of course, is fraught with stigmatization and accompanying horror stories of patients losing their jobs, their health benefits, and their social networks because their health information was disclosed to persons who had neither a right nor need to know it. The challenge for new surveillance strategies to work--which largely involve data traveling from an initial diagnosis that is sent to a state data repository and then back to a treating professional or facility--is to continue to diminish the public's fear of the disease, its discriminatory potential, and deep seated anxieties about information sharing.
Just as the extraordinary research efforts of the last 25 years in HIV treatment have recently witnessed astonishing success, let us hope we can realize the same in our educational efforts to bring social attitudes and behaviors in line with contemporary science and HIV therapy. It would constitute a sure win-win.
John Banja, PhD, is a Professor of Rehabilitation Medicine, a Medical Ethicist at the Center for Ethics and the Director, Section on Ethics In Research – Atlanta Clinical and Translational Science Institute Associate Editor.
