November 18, 2010
For our World AIDS Day 2010 section, we wanted to capture the diversity of the AIDS community. So, we reached out to people across the world -- mostly those who have never written for us before -- and asked them to guest blog. These columns are written by people who are living with HIV, have been affected by HIV, or work in the field.
I am a scientist and a queer man. These two worlds, for the most part, exist in separate spaces. However, on rare occasions the two spaces crash together uncomfortably.
One Saturday night in winter I found myself in Chi Chiz, a West Village staple that is now being threatened with closure as the neighborhood continues to gentrify. Chi Chiz is one of the oldest bars in New York that is traditionally patronized by gay men and women of color. This particular night I was surprised to find that I was not, in fact, one of the few white men in the bar. Upon settling in, and ordering a drink, I realized that most of the other white folks had clipboards and fliers. Interesting. They worked this small room, talking to strangers, but not in the "I want to get your phone number..." sort of way. Curious, I started to eavesdrop.
It turns out that this small group of mostly white men had come into Chi Chiz to recruit for an HIV/AIDS vaccine study being conducted in the city. My mouth, almost immediately, dropped to the floor. And when I picked up my senses and managed to listen to the content of their pitch, my anger and frustration grew.
I should admit that I am not only a scientist, but my research has largely focused on microbes and how they manage to make us sick. As an undergrad, I worked on retroviruses, like HIV. I was and remain fascinated by how one virus that is made up of only 13 genes (!!!) can manage to wreak such havoc on a complex organism, like a human, by eradicating its entire immune system. Above and beyond this initial curiosity of studying viruses, I am also fascinated by the work done by scientists and how it directly affects and impacts communities. At Rockefeller University, the school I attend, I have the amazing opportunity to be taught by some of the same scientists who helped pioneer the use of the drug cocktails that have changed the lives of many living with HIV.
But back to Chi Chiz.
Enrolling in a drug or vaccine trial is an incredibly heroic act where individuals may well be putting the best interests and health of their community before their own. In fact, HIV vaccine trials have been fraught, with at least one very recent example of an HIV vaccine appearing to increase the likelihood of infection. Individuals should enroll in such trials only after careful thought and consideration of the real and tangible risks, as well as the benefits that a vaccine may provide in the future. This can never happen over cocktails.
Yet, this measured analysis was absolutely absent from the recruiter's stump speeches. They talked about the desperate need for a vaccine, how condom use is simply not good enough to prevent the spread of HIV because condoms break. They implied that vaccine research was nearing a conclusion, that in fact a vaccine may be imminent. It sounded great, the only problem is that none of it was even remotely accurate.
We should not ignore the transformative difference an HIV vaccine could provide in global public health, nor should we stop trying to develop a vaccine because trials in the past have proved ineffective. What is absolutely critical, however, is that scientists have the highest ethical standards when it comes to recruiting volunteers to undergo what can be dangerous clinical trials. And when it comes to communities of color, that hasn't always been the case -- the scientific community has a less than stellar track record.
The infamous Tuskegee experiments where scientists purposefully withheld treatment from 400 black men with syphilis; forced sterilizations of black women in the '50 and '60s; and the questionable testing of the birth control pill on women in Puerto Rico are just a few examples of many gross acts of inhumanity endured in the name of science. And while these injustices may have happened generations ago, we are not far removed from it at all. This cultural mistrust for the medical community still brews inside many people.
If there is any hope of gaining trust in the communities most affected by HIV, scientists must act responsibly. Recruiting participants for potentially dangerous clinical trials at bars, particularly bars catering to communities of color, by lying about the risks and benefits involved is no way to gain this trust. In fact, it will only further enshrine the scientific enterprise in accusations of racism, classism and homophobia.
Joe Osmundson is a biophysicist who attends Rockefeller University in New York City.