HIV研究的下一个前沿是寻找治愈方法。一个新的优先事项包括患有非艾滋病晚期疾病的艾滋病毒感染者(PWH),他们愿意在生命结束时(EOL)捐献自己的身体,以推动寻找艾滋病毒治疗方法。我们努力了解对这项研究的看法,并确定与实施该研究相关的道德和实践考虑因素。
我们在美国的四种主要利益相关者中进行了20次深度访谈和3个虚拟焦点小组(PWH,生物医学HIV治疗研究人员,HIV临床医生,和生物伦理学家)获得三角观点,因为对该主题的伦理学知之甚少。每个小组都被问及道德考虑,保障措施,以及在EOL进行HIV治愈相关研究的保护措施,以确保这项研究仍然可以接受。
由于PWH社区内利他主义的历史以及获得大量科学知识的潜力,所有四个关键利益相关者团体都普遍支持在EOL进行的与HIV治愈相关的研究。我们的线人表示:(1)强有力的利益相关者和社区参与是道德和有效实施的组成部分,以及这项研究的社会可接受性;(2)接近EOL的PWH不应该被认为是一个脆弱的阶级,他们的自主权必须得到尊重时选择参加在EOL艾滋病毒治疗相关的研究;(3)研究参与者之间更大的多样性,以及多学科研究团队,需要在EOL进行与HIV治愈相关的研究;(4)这项研究的敏感性要求进行强有力的监督,以确保有利的风险/收益平衡,并最大程度地减少治疗误解或不当影响的可能性;(5)研究方案应保持灵活性,以适应参与者在EOL的舒适度和需求。
由于艾滋病治疗相关研究在EOL提出的伦理问题,强有力的道德保障至关重要。本文提出的道德和实践考虑是确定最大化本研究影响和社会价值的最佳方法的第一步。需要进行更多的调查,以了解在不同环境中实施EOLHIV治愈研究的特定环境和文化考虑因素。
One of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it.
We conducted 20 in-depth interviews and 3 virtual focus groups among four types of key stakeholders in the United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable.
All four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants\' comfort and needs at the EOL.
Because of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research\'s impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings.