Media Releases

Misunderstanding surrounds HIV vaccine trials

September 6, 2011

TORONTO, ON – Bet­ter com­mu­ni­ca­tion is need­ed around HIV vac­cine tri­als to ensure those in at-risk com­mu­ni­ties under­stand the process and con­tin­ue to par­tic­i­pate, accord­ing to a new Uni­ver­si­ty of Toron­to study.

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.


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For more infor­ma­tion, please con­tact:

 

Peter A. New­man
p.newman@utoronto.ca
Note: in Bangkok for AIDS Vac­cine Con­fer­ence and only avail­able for telephone/email inter­views.

Uni­ver­si­ty of Toron­to media rela­tions
416–978-0100
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