isles and pearn 's clinical trial commentary discusses the impact of descriptors and acronyms used to describe a range of clinical trials , where the use of positive descriptors may exert undue influence on the perception of potential participants . in hiv , cure itself to create misunderstanding and raise unrealistic expectations for potential personal benefit from participation in trials . cure in describing current research : sterilising / functional cure , sustained virological response ( svr ) , and clinical remission . they opt for  clinical remission, a term long familiar in cancer research and clinical care , which appropriately  denotes improvement with some uncertainty . dub and coauthors   concur that  language used to describe clinical research represents a powerful opportunity to educate volunteers, recommending the term  experiment as more appropriate than hiv studies or  clinical trials. finally , volberding   points to the broader , potentially negative impact of over - hyped media attention , where inappropriately positive terminology is used to describe very preliminary trial results . because clinician scientists are not immune to therapeutic misconception and highly optimistic beliefs about clinical trials , the need to clarify and revise the hiv cure language extends to professional use as well as when describing these trials to patients and communities . the input of community leaders and advocacy organisations about language preferences should be highly prioritised , and replacement terms should be explored with patients to evaluate their acceptability . there are well - established decision - making and health behaviour theories that provide a systematic framework to conceptualise and explore health - related behaviours relevant to clinical trial decision making . for example , the health belief model ( hbm )   is a commonly used conceptual framework to understand why individuals do or do not engage in health - related actions . dimensions of the hbm include perceived susceptibility ( a perception of personal vulnerability or risk ) , illness severity and burden , perceived benefits of the health - related behaviour , and perceived barriers to achieving the desired health outcome . the model includes cues to action ( e.g. the offering of trial participation ) that might spur a health - related decision , together with influences of social , demographic and personality factors . several resources that describe social science relevant to decision studies are shown in the resources panel . available from : 
 http://searchiv.web.unc.edu  ( accessed november  2014 ) the use of decision frameworks and theoretical models can inform studies nested within clinical trials to better understand the processes of decision making , influences on decisions that are made , and post - trial decision satisfaction . furthermore , it may be useful to explore potential participants hopes and expectations as distinct decision - making influences . aspects of clinical trials decision  making for exploration who is involved in making the decision ? are there cultural and societal norms that play a role in decision making ? how is the decision made , when is the decision made ? at time of the primary informed consent encounter , before , or after ? what is the impact of the person 's experience with hiv on his / her trial decisions ? what does the participant expect will happen during the clinical trial , in terms of logistics , benefits , burden , and harms ? what does the participant hope might happen during the clinical trial ; what are the influences of emotion and optimism ? how is decision satisfaction related to prior decision - making influences , if at all ? does the participant express decisional regret ?  in what areas ? we encourage clinical trial teams to collaborate with social scientists to integrate decision - making studies in their trials . in contrast to studying responses to hypothetical scenarios or retrospective studies of trial participants , the current situation in hiv cure research offers a unique opportunity to investigate participants experiences as they are unfolding , in real time . concurrently , collaborative research teams can determine how to ensure that a nested decision study provides important feedback to the clinical trial team while taking care not to disrupt or threaten the clinical trial process . in developing decision - making studies in these early days of hiv cure research , community engagement is especially vital to ensure that the decision study focuses on domains and asks specific questions that are most relevant to the participant experience . longitudinal or comparative studies that follow participants from consent to trial end will provide especially important information on perceptions of such studies can also be used to inform decision - making interventions and generate ( and later test ) hypotheses related to study adherence and maintenance of participation . in addition , exploring perspectives of individuals who qualify for a trial , but decline participation provides valuable input into trial design and recruitment . better understanding the perspectives , experiences , and decision making of clinical trial participants and decliners will not make the ethical challenges any less challenging . it should , however , lead the hiv cure community to more informed choices about how to address the challenges that face us as we aim to enhance the potential societal benefits of cure research while best protecting participants and patient communities . it is vital to protect the public trust in research on hiv cure so that any future interventions arising from it are not tainted with negative reputation that could undermine effectiveness .
abstracthiv cure research , a diverse set of studies aimed at eradicating or greatly reducing hiv in latent reservoirs , has become a strategic priority for global aids research . 
 however , in early - phase hiv cure research there are ethical challenges related to the uncertainty around potential risks and the risk  benefit balance . 
 similar to clinical trials in other disease areas , these concerns may impact clinical trial participants comprehension and decision making . here 
 we suggest attention to the terminology used to describe hiv cure research that may promote therapeutic misconception , and exploration of the decision - making influences and processes of those who accept and decline participation in hiv cure trials . 
 these data will facilitate efforts to improve protocols and informed consent based on an understanding of participant preferences and needs .