African Americans are disproportionately affected by HIV; they account for 34% of AIDS cases in the United States, but only 11% of the U.S. population. Yet the decision to participate in development of a vaccine against AIDS is not an easy one for most Black Americans. Noted researcher Robert Fullilove once said that "understanding the HIV epidemic among African Americans requires an examination of how factors such as poverty, disease, and the constant theme of racism combine with the virus to kill." 1

Our question also requires a closer examination of who is at risk. Although African Americans are often viewed as one group, there are, in fact, a number of subpopulations lumped in this category. Upper-class/lower-class, Christian/Muslim, inner-city/suburban, descendants of slaves and recent Caribbean immigrants all are classified as African American but are at very different degrees of risk. In addition, there are Black (and White) Latinos who often must deal with language and immigration issues. Many lack culturally appropriate health care.

For Black American, the Tuskegee legacy and other misuses of medical research have become a large barrier and powerful deterrent to participation in any kind of medical research - especially any research that may involve injections. The Tuskegee Study of Untreated Syphilis in the Negro Male2 was begun in 1932 to chart the natural history of the disease without treatment. The study became unconscionable in the 1940s, when these men were not informed that penicillin was available to cure their disease. It wasn't until 1972 that the U.S. Public Health Service was shamed into stopping the "experiment," 1974-75 when reparations began for some of the families, and 1997 when President Clinton finally issued a formal apology. But the apology received far less media attention than the HBO movie Miss Evers' Boys at about the same time, or James H. Jones book, Bad Blood, a more complete account that is used in classrooms from elementary to graduate schools. The president's apology, no matter how well intentioned, will not eliminate the legacy of distrust this blot has placed on all medical research. To make matters worse, many mistakenly believe that the participants were actually injected with syphilis as part of the study.

There is also a persistent belief that AIDS is a form of racial genocide. Such conspiracy theories of Whites against Blacks abound, ranging from the belief that the government promotes drug abuse in Black communities to the belief that HIV is a manmade weapon of racial warfare. The fact that injection drug use is a major contributor to the spread of HIV in these communities adds to the sense that Black Americans are considered disposable by society and convenient to experiment on.

As far as vaccine trials go, an educator in Harlem noted that many potential participants cannot get past the belief that all vaccines contain the virus they are meant to protect against, and fear only increases when they are advised that they may test positive on an HIV screening test. Reassurances are difficult to hear above the internal alarms this risk sets off. We must probably accept the fact that some people will never be comfortable with the concept of becoming HIV antibody-positive while remaining free from HIV infection.

So, should Black Americans participate in clinical trials to develop an HIV vaccine?

Yes, if they want to be sure that the scientific response to this epidemic works for Blacks around the world. Protective immunization, the main strategy that has controlled other viral diseases, is the only method that is likely to control HIV/AIDS at home and worldwide. Without Black participation we will not learn about protecting Blacks at the same time we learn about other populations.

Because trust is critical to successful recruitment and retention of Black Americans in vaccine trials, researchers must really collaborate with minority communities. As noted by Dr. Barbara Ross-Lee, "advocating for the welfare of all trial participants, mandating exhaustive informed consent processes, and providing thorough patient education place knowledge and power in the hands of potential subjects. Culturally representative research teams would help lessen feelings of vulnerability while increasing the cultural sensitivity of the research enterprise and increasing community trust. Scientist and community members must be willing to learn from each other in order to trust one another.

The number of HIV/AIDS deaths is down dramatically for white Americans. Blacks have seen the same result when they have access to expensive antiviral drugs. But today's HIV treatments are as accessible to most of the world as a formal black tie dinner. The chef has prepared a sumptuous banquet, her assistants have created flawless presentations, servers are prepared to present an unrivaled dining experience, yet most of the world will not be allowed in the banquet hall. Many cannot even imagine what it is like to watch the guests arrive. Black participation in vaccine clinical trials can create a community, which would assure that we will not only be at the table, but also help determine the menu and service available.

Dr. Wakefield is the Associate Director for Community Relations and Education in the HIV Vaccine Trials Network at the Fred Hutchinson Cancer Research Center in Seattle, Washington.

Footnotes:

1 Fullilove, MT. "Perceptions and Misperceptions of Race and Drug Use (editorial)," Journal of the American Medical Association.

2 Jones, James H. Bad Blood: The Tuskegee Syphilis Experiment, New York, NY, The Free Press, 1993.