Misunderstanding surrounds HIV vaccine trials: Study shows better communication needed with at-risk communities

The study -- published in the September edition of the American Journal of Public Health -- centred around a major international HIV vaccine trial that was called off before completion in 2009. Researchers wanted to know what individuals in high-risk communities understood about the trial and its termination, and how that impacted their willingness to participate in and support future research.

"In order to find a vaccine for HIV, it's essential to have the participation of those in at-risk communities for vaccine trials," says lead author Peter A. Newman, Professor at U of T's Factor-Inwentash Faculty of Social Work. "Our study showed that we're not doing enough to adequately communicate the processes and outcomes of HIV vaccine trials to most-at-risk populations. There is still a lot of misinformation, distrust and misunderstanding out there, which could ultimately lead to people in high-risk communities refusing to participate in trials."

In Toronto and Ottawa, researchers interviewed nine focus groups made up of people from "high-risk" communities. They asked participants about their knowledge of vaccines and vaccine trials -- including the cancelled international trial -- and probed their understanding of why that trial was called off. Researchers also questioned participants about their willingness to participate in future trials.

A few key themes emerged, according to Newman, who holds the Canada Research Chair in Health and Social Justice at U of T:

• Many people still believe that vaccine trials involve injecting a small amount of HIV into participants, a falsehood that could affect their willingness to participate in vaccine trials.
• There is a distrust of doctors and medical researchers. The international vaccine trial was called off when researchers discovered a small subset of participants were placed at a higher risk of contracting HIV, but many people didn't believe this was an unforeseen consequence. Some participants believed the doctors/researchers must have been able to predict this consequence, and this reinforced their distrust in the medical system.
• There is some confusion surrounding why HIV vaccine trials target people in high-risk communities. Some study participants saw this as unfair, from a social justice perspective.

"We found that there is a general altruism towards HIV vaccine trials in these communities, and a feeling that people should participate 'for the greater good,'" says Newman. "But there is also a lot of overriding confusion and misunderstanding, which illustrates a clear need for medical researchers and health professionals to do a better job of communicating with at-risk communities before, during and after trials."

Newman will present related findings at this year's annual AIDS Vaccine Conference in Bangkok between September 12 to 15.