Recruiting and race.
(As aired on All Things Considered, February 24, 2003)

Back before the VaxGen trial started, I worked for a government-sponsored HIV vaccine trial network.

I was a community educator. Month after month, I met with people in my city, not to recruit volunteers, but simply to explain HIV vaccine research.

Even more than simply getting people to understand the research, we also needed people to trust in its importance and its integrity, and that was difficult. People at high risk for HIV are often disenfranchised. Whether it's gay men in San Francisco or African-American women in Chicago, they also often distrust government and research. Only a few decades ago, after all, researchers called homosexuality a disease and touted the results of the Tuskegee Study, an unethical study of syphilis among African-Americans.

At the same time, the government-sponsored network was also cautious about which vaccines to test. VaxGen was more aggressive. Once they got financing for the study, they had to enroll 5,000 people quickly.

VaxGen was a publicly held company, and if it didn't meet its recruitment goals, the financing could have collapsed. They were trying to sign up whoever would come. My office helped, and so did many other quickly assembled research sites. They started a community advisory board once the trials started, on which I served after leaving my job, but by then, they didn't really have time for long-term trust building.

As it turned out, many HIV-negative white gay men had friends who were alive because of AIDS treatment research, so they were ready to believe in research and signed up without having those long conversations about history and trust. So as the company stormed through its recruitment period, they mostly signed up the white gay men.

Now that the trial is over and the bad news is here, the company is trying to excavate a hint of good news in the hint of data that the vaccine might have tended to work differently among African-Americans and possibly some other people of color. But whether this is really about ethnicity or actually about gender or something else, like geography or behavior or random statistical chance, is impossible to say yet.

What can be said is that the number of African-Americans was quite small in this trial, and that teasing out the meaning of the data will be more difficult as a result. That's partly because no one knew for sure that this would be a question, and the trial wasn't designed to answer it. But it's also going to be difficult because the trial signed up the people who were easiest to sign up.

Before today, in private conversations, I heard people of all ethnicities wonder about whether diversity in trials really mattered. Today, it matters.

We know that healing racial wounds is important for democracy, for feeling better about our neighbors and for fulfilling the potential of our society. We're reminded today that it's also important for science.

 

copyright 2003 joe wright
broadcast and transcript, copyright 2003 national public radio