Canada: Study Examines Common Reasons for Not Participating in AIDS Vaccine Trials

As scientists debate the future course of AIDS vaccine research, a new study sheds light on why so many people are reluctant to volunteer as subjects for vaccine trials.

Peter Newman, a professor of social work at the University of Toronto, and colleagues interviewed people who had volunteered for the Toronto arm of the international STEP AIDS vaccine trial but decided after enrolling not to take part. All had altruistic reasons for joining; their reasons for dropping out were varied.

Chief among would-be participants' fears was the possibility of testing HIV-positive because of the presence of HIV antibodies, even without actually being HIV-infected. Newman noted, "They said ... 'How am I going to explain to some guy I might meet and really like, you know, I'm positive but not really?'"

Some worried they would not be able to get life insurance or visit the United States, which bars entry by non-citizens with HIV. Several said their private insurers had warned them they would be ineligible for some coverage if they joined the trial.

Additional objections included other possible side effects, inadequate remuneration, and the years-long commitment involved.

The objections were typical of those often raised by people who are at elevated risk of HIV and are thus good candidates for vaccine trials, said Jose Sousa, chair of the community advisory committee for the Canadian HIV Trials Network. "The big thing is being antibody-positive afterwards and insurance. You don't know it's a false positive until it's double-checked and insurance [companies] don't do that," he said.

To facilitate recruiting for future trials, Newman said such efforts should include free psychosocial support, an ombudsman to deal with insurers and other institutions, and reasonable pay for time, effort, and risk.

Sousa said these suggestions should be acted upon by trial designers: "If they want their studies completed, they better listen to the community."

The full report, "Community Heroes or "High-Risk" Pariahs: Reasons for Declining to Enroll in an HIV Vaccine Trial," was published in Vaccine (2008;26(8):1091-1097).

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