The ethics of talking about ‘HIV cure’

Abstract

BackgroundIn 2008, researchers reported that Timothy Brown (the ‘Berlin Patient’), a man with HIV infection and leukemia, received a stem-cell transplant that removed HIV from his body as far as can be detected. In 2013, an infant born with HIV infection received anti-retroviral treatment shortly after birth, but was then lost to the health care system for the next six months. When tested for HIV upon return, the child (the ‘Mississippi Baby’) had no detectable viral load despite cessation of treatment. These remarkable clinical developments have helped reinvigorate the field of ‘HIV cure’ research.DiscussionAlthough this research field is largely in a pre-clinical phase, talk about curing HIV has become a regular feature in the global mass media. This paper explores the language of HIV cure from philosophical, ethical and historical perspectives. Examination of currently influential definitions of ‘functional’ and ‘sterilizing’ HIV cure reveal that these conceptualizations are more complicated than they seem. Cure is often understood in narrowly biomedical terms in isolation from the social and psychological dimensions of illness. Contemporary notions of HIV cure also inherit some of the epistemic problems traditionally associated with cures for other health conditions, such as cancer. Efforts to gain greater conceptual clarity about cure lead to the normative question of how ‘HIV cure research’ ought to be talked about.SummaryWe argue that attention to basic concepts ethically matter in this context, and identify advantages as well as potential pitfalls of how different HIV/AIDS stakeholders may make use of the concept of cure. While concepts other than cure (such as remission) may be appropriate in clinical contexts, use of the word cure may be justified for other important purposes in the struggle against HIV/AIDS.

Getting the “Kill” into “Shock and Kill”: Strategies to Eliminate Latent HIV

“…Individuals on ART have a near normal life expectancy (Wandeler et al, 2016) and in early phase studies aimed at achieving HIV remission or cure, participants are unlikely to have a direct benefit from the intervention while there are also potential risks. These issues have been reviewed elsewhere (Lo et al, 2013; Rennie et al, 2015). In contrast to interventions for malignancy, toxicity of any intervention must be low and the pre-clinical rationale for the study well justified in order to proceed to early phase clinical trials.…”

Towards Multidisciplinary HIV-Cure Research: Integrating Social Science with Biomedical Research

“…With respect to HIV cure research specifically, it is important to consider how individuals and communities understand basic terminology (e.g., cure, remission, and eradication) [29] and how they weigh and balance competing notions of cure coming from different ‘experts’, including previous or alternative notions of HIV cure that have been discounted by scientists [30]. Additionally, it is important to know how the social construction of cure, including how cure is communicated affects what is and is not studied, as well as what is or is not taken up.…”

Cure research and consent: the Mississippi Baby, Barney Clark, Baby Fae and Martin Delaney

“…Stuart Rennie and colleagues rightly note that ‘HIV cure concepts’ are works in progress 6. In the medical literature, for example, it is more common to find terms like ‘functional cure’ or ‘sterilising HIV cure’.…”

“…In the medical literature, for example, it is more common to find terms like ‘functional cure’ or ‘sterilising HIV cure’. The press and the public, on the other hand, are more likely to simply use cure, and are likely (it seems to me) to use it in the way Rennie and colleagues tell us it is found as the first definition in Merriam-Webster Medical Dictionary: ‘recovery from a disease (“his cure was complete”)’ 6. In this regard, cure can also be used as a short hand for permanent disease remission: HIV may still be detectable, but it has no health impact on an individual and requires no further treatment.…”

“…These are all good points, but I will concentrate on saying more about one of their questions, “how might cure language ‘do wrong?’” Their answer is

The most obvious way is falsehoods through unsubstantiated claims of HIV cure … In the short term, concern about ‘harms due to false belief via cure language’ is likely to center on informed consent to HIV cure research … the therapeutic misconception is the well-documented phenomenon of research participants mistakenly believing that they stand to benefit …[a similar] curative misconception in HIV research would involve HIV-positive research participants falsely believing that they stand to be cured by the tested intervention. (Emphasis in original)6

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