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Realism needed about the benefits and risks of taking part in HIV cure studies
Roger Pebody, 2016-08-31 07:30:00
A significant proportion of people living with HIV would be
willing to take part in a study towards a cure for HIV, research presented at
the 21st International AIDS
Conference (AIDS 2016) in Durban, South Africa last month shows.
However some potential participants may not fully understand that taking part
in an early-phase study is highly unlikely to afford any personal clinical
benefit, but might have the potential to cause harm.
There is “an ethical imperative to understand the
motivations, decision‐making, expectations and comprehension of potential trial
participants,” researchers say. Improved community engagement and education appears
to be needed.
According to an Australian survey, 82% of people living with
HIV would be ‘willing’ or ‘very
willing’ to participate in a
clinical trial related to HIV cure research. However respondents would be less
willing to participate if it:
- would increase their susceptibility to illness (87%),
- risked developing resistance to current antiretrovirals
- resulted in an unpredictable viral load for up to one year
- involved weekly visits to a medical clinic for several
In contrast, 31% would be more willing to participate if it would help future
generations but offered no personal benefit.
When asked about the possible characteristics or benefits of
a cure, respondents indicated that the most important was not passing the virus
to others. Also very important was not being at risk of ill‐health due to
advanced HIV disease.
Other outcomes were ranked lower: stopping using HIV
medications, being considered a person without HIV infection, not getting HIV
again for a second time, fewer medical visits.