Université de Lausanne (IEPHI-CRAPUL), Switzerland and CRPS-CESSP (Paris 1-Sorbonne), France.
J Acquir Immune Defic Syndr. 2018 Oct 1;79 Suppl 1:S59-S68. doi: 10.1097/QAI.0000000000001809.
In France, participation in vaccine trials is necessarily a personal act that is not intended to be made public. It does not involve any direct act of solidarity nor does it require any protest or demanding behavior. On the contrary, it requires unconditional compliance with the research protocols. However, it is a form of individual commitment, which is part of a range of social motives that determine the various forms of voluntary involvement in the fight against AIDS: financial donations, voluntary work in associations, political activism, etc. In this study, we use the application letters of the people who responded to the annual recruitment campaigns launched by the Agence Nationale de Recherche sur le Sida et les Hépatites (ANRS) to take part as volunteers in vaccine trials related to the fight against HIV. At the end of a selection process, a certain number of people were recruited every year between 1991 and 2001 and included in a "volunteer network" [The application materials were anonymized by the ANRS before they were sent to us. The network is defined as a group of volunteers (based on the model of blood and bone marrow donors) who have direct contact with the researchers in the form of a partnership and not the classic relationship of therapeutic dependence, are aware of the absence of any direct benefit and of the risks involved, are informed regularly about changes in research, and have the possibility to get to know each other during annual meetings and to share their experiences, hopes, and any disappointments. Selection was performed in a general manner for the purpose of inclusion in the "network" and not for a particular trial. The uniqueness of the network facilitates the distribution of volunteers between trials for the varying needs of the protocols while reinforcing a sense of integration intended to maintain their motivation.]. In addition to the application materials, we add a series of informational interviews with several people in charge of recruitment for the decade studied, as well as about a dozen biographical interviews with volunteers included in the network [The data were made available as part of a research project of the ANRS (2003), transformations des logiques de l'engagement dans la lutte contre le sida: motifs, facteurs et conséquences biographiques de l'engagement dans les essais vaccinaux, (Transformations in the basis of commitment in the fight against AIDS: reasons, factors, and biographical consequences of engagement in vaccine trials), in which Philippe Blanchard and Anne Marijnen collaborated for some of the statistics, informational interviews with recruiters, and life histories of a group of volunteers. Véronique Doré and Yves Souteyrand, through their efforts, were able to remove all obstacles to the collection and processing of information. For this, we thank them warmly. This article was taken from a lecture given during a study day on June 12, 2015, in cooperation with the Vaccine Research Institute, entitled Du recrutement pour à l'engagement dans la recherche: Interactions et médiations constitutives des recherches en prévention contre le VIH au Nord (Recruitment for engagement in research: interactions and mediations in research on the prevention of HIV in Western Countries). It also benefited from the comments of participants.]. The research consisted of an exploration of 2 connected aspects: the rationale behind voluntary engagement (the act of submitting an application) and the rationale underlying the recruitment (the work involved in the selection process of people by the ANRS). In most studies, the determinants of engagement are identified based on an analysis of the attributes of the selected volunteers but without showing whether these attributes distinguish them from applicants who were not selected. In addition, "motivations" for engagement are usually collected a posteriori. In this case, the corpus of initial application letters offers the possibility of comparing one population of applicants with the people who were eventually included in the network and distinguishing those who dropped out or refused to be included.
在法国，参与疫苗试验必然是一种个人行为，不打算公开。它不涉及任何直接的团结行为，也不需要任何抗议或要求行为。相反，它要求无条件遵守研究方案。然而，这是一种个人承诺的形式，是决定参与艾滋病斗争的各种自愿形式的社会动机之一：财政捐款、协会中的志愿工作、政治激进主义等。在这项研究中，我们使用了对年度招聘活动做出回应的人的申请信，这些活动是由法国国家艾滋病和肝炎研究机构（ANRS）发起的，目的是作为志愿者参与与 HIV 相关的疫苗试验。在经过选择过程后，每年都会有一定数量的人在 1991 年至 2001 年期间被招募，并被纳入“志愿者网络”[ANRS 在将网络发送给我们之前对申请材料进行了匿名处理。该网络被定义为一群志愿者（基于血液和骨髓捐赠者的模式），他们以伙伴关系的形式与研究人员直接接触，而不是经典的治疗依赖关系，他们意识到没有任何直接利益和涉及的风险，定期了解研究的变化，并有可能在年度会议上相互了解，并分享他们的经验、希望和任何失望。选择是为了纳入“网络”而不是为了特定的试验而进行的一般性选择。网络的独特性便于根据协议的不同需求在试验之间分配志愿者，同时加强了整合感，以保持他们的积极性。]。除了申请材料，我们还增加了对负责研究人员进行的十年来的一系列信息采访，以及对网络中纳入的十几名志愿者的传记采访[数据是作为 ANRS 研究项目（2003 年）的一部分提供的，即参与抗击艾滋病斗争的逻辑转变：动机、因素和参与疫苗试验的传记后果（参与疫苗试验的动机、因素和传记后果的转变），Philippe Blanchard 和 Anne Marijnen 合作完成了一些统计数据、招聘人员的信息采访和一群志愿者的生活史。Véronique Doré 和 Yves Souteyrand 通过他们的努力，成功地克服了收集和处理信息的所有障碍。为此，我们深表感谢。本文选自 2015 年 6 月 12 日在疫苗研究所合作举办的研究日演讲，题为“从招募到参与研究：预防 HIV 研究中的互动和构成因素：北方的研究”（从招募到参与研究：预防 HIV 研究中的互动和构成因素）。它还受益于参与者的评论。]。研究包括两个相互关联的方面的探索：自愿参与的基本原理（提交申请的行为）和招募的基本原理（ANRS 对人员进行选择过程的工作）。在大多数研究中，通过分析选定志愿者的属性来确定参与的决定因素，但没有表明这些属性是否将他们与未被选中的申请人区分开来。此外，“动机”通常是事后收集的。在这种情况下，最初的申请信的语料库提供了一种可能性，即比较申请人群体与最终纳入网络的人，并区分那些退出或拒绝被纳入的人。
