Research Profile - Reaching the wronged: Preparing the way for an HIV vaccine

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In laboratories at research institutions around the world, biologists, geneticists, immunologists, chemists, doctors and pharmacists are working feverishly to devise vaccines to tackle the public health scourge of the 21st Century: HIV. But social scientists are also playing a role in this effort, conducting research to ensure that any vaccine developed for HIV reaches the people most at risk of contracting the infection.

At the University of Toronto, professors Peter A. Newman and Charmaine Williams have studied barriers to testing and disseminating a future HIV vaccine to black women. Newman has also studied the same barriers involving Aboriginal people. Black women and Aboriginals are two of the populations at higher risk of HIV exposure in Canada.

Black women are three times more likely to be diagnosed with HIV than white Canadian women, and Aboriginal peoples comprised 9 percent of new HIV infections in 2005, despite the fact that only 3.8 percent of Canadians are Aboriginal.

Decades of systemic racism and abuse has left a history of mistrust that is one of the most intractable obstacles to researchers seeking to involve members of either group in clinical trials for vaccines, Williams and Newman found. The same barriers will make it difficult to persuade people to be immunized once an HIV vaccine is approved.

"There's a suspicion of research and researchers," says Williams, a social worker and Associate Professor at the University's Factor-Inwentash Faculty of Social Work. "They don't believe necessarily that research is being done for their own good."

Unlike the more general suspicion that some members of the public harbour about "big pharma" or the potentially negative effects of vaccines, the mistrust that black women have of research and trials is based on documented examples of ethical abuses in research that harmed people of colour, says Williams, who conducted focus groups, administered surveys and interviewed key members of Toronto's black community.

Many of the people who Williams and Newman contacted cited the Tuskegee syphilis study involving 400 poor black men in the 1930s and 1940s. During the experiment, which lasted 40 years, the Tuskegee Institute and the Public Health Service in Alabama denied curative treatment to the men, who were not told the real purpose of the study. The scientists wanted to study how syphilis spreads and kills.

That study is common knowledge in the black community, says Williams. "It continues to have a huge impact. There's a feeling – and it's not a myth- that specific harm has been done."

Among Aboriginal people, that same feeling of distrust is fuelled by reports of forced sterilizations, the contamination of First Nations communities by PCBs, DDT and other chemicals, and the forced removal of children to attend residential schools, says Newman, who holds a Canada Research Chair in Health and Social Justice.

African and Caribbean women and Aboriginal people whom Newman interviewed expressed concern about having any potential HIV vaccine tested on them, citing fear they too would be guinea pigs. At the same time, they also expressed concern that any vaccine developed after clinical trials using middle-class white people as subjects might not work in the same way with black or Aboriginal peoples.

"It's a bit of a Catch-22 (for researchers)," says Newman. "It's not impossible to deal with, but it has to be acknowledged."

After identifying the barriers that exist to enrolling members of these communities in potential vaccine trials and to reaching them with any vaccine, Newman and Williams formulated recommendations for other researchers.

Chief among them is the need to build relationships and work with trusted members of these communities in the design of any clinical trials, and in the distribution of vaccines, says Newman.

Working with the communities to develop culturally appropriate materials and information, and support for teaching through modelling, rather than merely instructing, is also important, he says.

"You don't tell people what to do. You give them all the information and give them some time to think about it, and discuss it again if they want. It takes time," Newman says.

Working with trusted health partners, like professionals at Toronto's Women's Health in Women's Hands clinic, is also critical for any future success, says Williams.

"If you make connections with the places that women trust, then that trust can transfer," she says.

In both communities of black women and Aboriginal people, a tradition of altruism and giving back to the community is strong. Researchers can build on that tradition to promote access to trials and to HIV vaccines if they take the time to explain and educate people, Williams and Newman say.

They hope their research will help overcome the obstacles that already exist to the successful uptake of a future HIV vaccine as well as to more immediately available HIV prevention information and technologies.

Although an effective vaccine may still be years away, the social scientists believe it's important to begin working now to build the bridges necessary to ensure access for people at higher risk of this disease.

"We have time to prepare, on a community level, and we have time to apply meaningful social science research to anticipate what the challenges will be once an HIV vaccine or other upcoming vaccines for sexually transmitted diseases (are developed)," says Newman.

"If you make connections with the places that women trust, then that trust can transfer."
Dr. Charmaine Williams, University of Toronto