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World AIDS Day

Posted by Kimberly Hensle Lowrance, Deputy Director

During his keynote address at PRIM&R’s recent annual conference, Carl Elliott, MD, PhD, Professor, Center for Bioethics at the University of Minnesota, remarked that the rapid growth of the research field has produced a cautionary tale for human subjects professionals. He noted that “three-quarters of clinical trials are now administered in the private sector,” which has increasingly removed the academic institutional review board and human research protection program from research activities. It has also, at times, resulted in situations where the motivation to “do good” has been replaced by the motivation for profit.

This issue is sobering for us all, and especially relevant today as we mark yet another World AIDS Day. With more than 33 million people worldwide living with HIV/AIDS, the need for better treatments, and hopefully, one day, a vaccine, are reasons why the work of the research enterprise is so vital. The shared efforts of the PRIM&R community—of those committed to advancing research, protecting subjects, and making our world healthier and better—brings us closer to realizing these goals.

Dr. Elliott’s talk also pointed a spotlight on the “business” of “guinea pigging,” where “semi-professional” research subjects make a living by enrolling in clinical trials. These people are, in effect, workers, but without the rights and protections, he explained, of those working in other industries throughout the United States. They are, as a result, vulnerable and without the needed oversight of a system designed to look out for them throughout the research process, from recruitment to follow-up. Additionally, many of them, as Dr. Elliott illuminated, would not have the means to access the drugs or treatments that are being tested on them, a violation, he explained, of the Declaration of Helsinki.Research subjects—no matter what their motivation for enrolling in a study—need advocates, just like the 7,000 people who become infected with HIV each day. They need an effective oversight system, that, should they decide to participate in a study that might further our understanding of epidemics like HIV/AIDS, assures they will be protected and their rights respected.PRIM&R observes this twentieth World AIDS Day in hope and in thoughtful consideration of all whose lives have been ever changed by the HIV/AIDS epidemic.