An international AIDS vaccine conference held in Boston, in America, discussed the importance of community participation in the search for a preventative AIDS vaccine. But how do people feel about participating in scientific clinical research? Ayanda Mkhwanazi, of Health-e News Service, sought their views.
"I wouldn't do it, no ways! I would be afraid to contract AIDS from it because, sometimes, they can give you a flu vaccine and you still get flu. So, if I accidentally contracted AIDS, then I wouldn't be too happy. It is a great thing, but personally, no", remarked one resident.
"I'm afraid I don't gamble very much, so I would have to decline. Also, I wonder what the answer to your question is, but around here, you would have to find willing people... maybe prison subjects that would be on death row or given a serious decline in their prison sentence if they participated. But the ordinary person here would say no", said another.
While it seems like community members in Boston may need a great deal of convincing to participate in clinical trials, Jim Maynard of the HIV Trials Network says the development of a vaccine will succeed or fail depending on the buy-in of community members in every society.
"I don't think the vaccine work can progress at all without the community. It's asking a huge sacrifice from any community, saying: 'We'd like to work with your people and try something that we hope will save millions of lives, but we don't know because it is experimental'. And, if you're going to ask something that big of them, the community can then say: 'How will this help our community? If you do succeed in this vaccine, will we get access to this vaccine?"
Despite facing rejection from communities, Maynard continues to devise innovative strategies to encourage community participation in the trials. He has turned to using the social media platform, particularly online dating sites.
"The most popular are the gay hook up sites, which are pretty much dating sites. Most of those sites have been helpful and responsive. Some have built research programmes in what they're doing. I appreciate facebook, but it can be more challenging that they do not allow advertisements that they would consider too edgy", says Maynard.
Community reluctance to participate in clinical trials is not isolated among residents of Boston. Miles away, in Uganda on the African continent, the same reluctance exists. Lilian Mutengu-Kasirye is from a research organisation, the Walter Reed Project, in Uganda and was one of the 1 000 delegates who attended the AIDS vaccine conference in Boston.
"One of our biggest challenges is: How do we get people to participate in our trials. In most cases, we have to invite them by giving them information of the study. But we still have lots of people who will talk ill about the product you are testing and tell us how we are infecting them. They are very suspicious. Sometimes, those who have joined the study end up quitting due to rumours they hear or misinformation".
Mutengu-Kasirye says the refusal of communities to participate in the clinical trials is counter-productive to the search for the HIV vaccine. She says it has the potential of reversing the recorded declines in new infections, particularly among married couples who are reluctant to participate in clinical trials in Uganda.
"Right now, according to our HIV sero survey, the married couples are the population with the highest prevalence of HIV, which is contradictory to the normal situation. These are people in stable relationships", she says.
While Maynard has resorted to surfing the net to draw communities in the United States to participate in the trials, his third world counterpart, Mutengu-Kasirye, says her desire and commitment to finding an HIV vaccine motivates her to educate, engage and urge her community to participate in clinical trials.