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HIV Cure Research Ethics
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"early-phase research does not confer projected direct clinical benefits and there is the possibility of harm while advancing medical knowledge. Results highlight the importance of managing expectations and thoroughly exploring the potential for therapeutic misconception.".....In other study author says "Such early trials may pose serious risks while initially producing little individual or social benefit.....Cure studies may be marked by a curative misconception among those who are HIV-infected and who hope to permanently rid their bodies of the virus."
Here is a poster at IAC Durban, take a look for yourself what motivates patients to participate in the cure studies. You can see in this Recommendations slide note is made that "interventions [interventions in these studies] are experiments that evaluate the basic safety of these interventions & these studies are meant to generate knowledge for the benefit of society" but the actual risks of participating need to be considered before entering the study. It is very important to understand the risks before participating in any study, including a cure study.
Following below are slides detailing the personal health risks of participating in these studies and the benefits some perceive - of note - potential to benefit society - that influence them.
The poster presents the results of a survey, poster says:
"An extensive, online cross-sectional survey was conducted among 400 American adults (22% females; 77% males; <1% transgendered) in September – October 2015. The sample was ethnically diverse (65% Caucasian, 17% African-American, 12% Hispanic, 4% mixed and 2% Asian) and 38 U.S. states were represented. We also conducted key informant interviews with 36 people living with HIV, researchers, bioethicists, members of Institutional Review Board(IRBs) and regulatory agencies to assess perceptions of benefits."
Here the poster authors say "Hope that health will improve may be a strong motivating factors; yet early-phase research does not confer projected direct clinical benefits and there is the possibility of harm while advancing medical knowledge.Results highlight the importance of managing expectations and thoroughly exploring the potential for therapeutic misconception"
"Despite no expectation of direct clinical benefit from participating in early-phase HIV cure clinical studies, the majority of potential volunteers value the societal benefit of furthering science and believe they will experience psychosocial benefits from their participation.
Data show that we should not underestimate the importance of socio-emotional benefits in HIV cure research participation. The perceived benefit of gaining knowledge about one's health raises questions about the need to communicate study data (in the aggregate) and advancements in science to study participants and highlights the importance of positive clinical contact factors. Hope that health will improve may be a strong motivating factors; yet early-phase research does not confer projected direct clinical benefits and there is the possibility of harm while advancing medical knowledge. Results highlight the importance of managing expectations and thoroughly exploring the potential for therapeutic misconception."
http://programme.aids2016.org/PAGMaterial/eposters/0_2406.pdf
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Ethics and HIV cure research......http://www.natap.org/2014/HIV/060114_02.htm
The pursuit of HIV cure research raises a number of important ethical issues [18,19].
Small human studies limit the extent to which generalizations can be made about curing HIV. Such early trials may pose serious risks while initially producing little individual or social benefit.....Cure studies may be marked by a curative misconception among those who are HIV-infected and who hope to permanently rid their bodies of the virus.
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Ethics of Cure Research
Cure studies in HIV+ patients have been ongoing and many patients in fact do volunteer to participate in these studies which can require interrupting HIV treatment called HAART. Here is review of the ethics of the studies including the risks of participating, and the potential benefits that may in the future result from all these studies IF a cure is found, and which could be 10-20 years from now, or never.
http://www.avac.org/sites/default/files/event_files/EthicsCure_SLIDES.pdf
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