What is a "cure," anyway? Not one presentation during this session failed to note the complicated semantic knots wrapped around the term "HIV cure" and the implications of misconceptions in securing authentic informed consent and community comprehension.
The language barrier exists not only between researchers and community members, but also across cultures. As Moodley noted during the Q&A, South Africa's 11 official national languages augment the challenge of developing universal definitions of terms. Salzwedel mentioned the importance of drawing a distinction between the scientific definition of "cure" in research and its social definitions and educating both research teams and community members on the different ways each respective group employs the term.
Power pointed out that researchers themselves have little control over how the term is used, citing the media's dismaying tendency to herald "cures" of all kinds. The language of HIV cure must be used carefully, and Dubé and Evans both relayed some ethicists' concerns with using the term "cure" or even "remission" at all during recruitment. Still, evoking survey participants' more altruistic motivations, Power stated: "If there are people out there saying 'I want to help with this. I want to participate in a trial. I want to be involved in cure' ... I don't necessarily think that's the same as misunderstanding the science."
The term itself, she notes, with all its myriad associations, is here to stay. One task moving forward is to create accessible, clear education for each local context around what "cure" means in the HIV community.
With HIV cure research on the horizon, explore some of the other top ethical questions being asked in advance here.