Division of Pulmonary and Critical Care Medicine, Hines Veterans Affairs Hospital, Hines, Illinois; and.
Stritch School of Medicine, Loyola University of Chicago, Maywood, Illinois.
Am J Respir Crit Care Med. 2022 May 15;205(10):1145-1158. doi: 10.1164/rccm.202201-0136SO.
This year marks the 50th anniversary of the uncovering of the Tuskegee syphilis study, when the public learned that the Public Health Service (precursor of the CDC) for 40 years intentionally withheld effective therapy against a life-threatening illness in 400 African American men. In 2010, we learned that the same research group had deliberately infected hundreds of Guatemalans with syphilis and gonorrhea in the 1940s, with the goal of developing better methods for preventing these infections. Despite 15 journal articles detailing the results, no physician published a letter criticizing the Tuskegee study. Informed consent was never sought; instead, Public Health Service researchers deceived the men into believing they were receiving expert medical care. The study is an especially powerful parable because readers can identify the key players in the narrative and recognize them as exemplars of people they encounter in daily life-these flesh-and-blood characters convey the principles of research ethics more vividly than a dry account in a textbook of bioethics. The study spurred reforms leading to fundamental changes in the infrastructure of research ethics. The reason people fail to take steps to halt behavior that in retrospect everyone judges reprehensible is complex. Lack of imagination, rationalization, and institutional constraints are formidable obstacles. The central lessons from the study are the need to pause and think, reflect, and examine one's conscience; the courage to speak; and above all the willpower to act. History, although about the past, is our best defense against future errors and transgressions.
今年是塔斯基吉梅毒研究被揭露的 50 周年,当时公众得知公共卫生服务署(CDC 的前身)在 40 年内故意对 400 名非裔美国男性隐瞒了一种危及生命的疾病的有效治疗方法。2010 年,我们得知同一研究小组在 20 世纪 40 年代故意让数百名危地马拉人感染梅毒和淋病,目的是开发更好的方法来预防这些感染。尽管有 15 篇期刊文章详细介绍了研究结果,但没有医生发表过一封批评塔斯基吉研究的信。没有征求知情同意;相反,公共卫生服务署的研究人员欺骗这些男性,让他们相信自己正在接受专家的医疗护理。这项研究是一个特别有力的寓言,因为读者可以识别叙述中的关键人物,并将他们视为日常生活中遇到的人的典范——这些有血有肉的角色比生物伦理学教科书中枯燥的叙述更生动地传达了研究伦理的原则。这项研究促使了改革,导致了研究伦理基础设施的根本变化。人们未能采取措施阻止事后每个人都认为应受谴责的行为的原因是复杂的。缺乏想象力、合理化和制度限制是强大的障碍。从这项研究中得出的主要教训是需要停下来思考、反思和审视自己的良心;有勇气说话;最重要的是要有行动的意愿。历史虽然是关于过去的,但却是我们防止未来犯错和侵犯的最好防御。