Wilets Ilene, O'Rourke Maria, Nassisi Denise
Department of Emergency Medicine, Mount Sinai School of Medicine, New York, NY 10029, USA.
Acad Emerg Med. 2003 Oct;10(10):1081-5. doi: 10.1111/j.1553-2712.2003.tb00578.x.
To assess views about clinical research, drawing current opinion from an urban, largely minority population within the authors' emergency department (ED).
Two focus groups of ED patients and visitors were conducted. These data informed the development of a 27-item interview examining views about clinical research and knowledge of human subjects protections.
The authors interviewed a total of 172 patients and visitors within an adult ED. Study participants reflected the diverse patient population: 38% were African American, 32% Hispanic, 25% white, and 6% other. When asked why one might choose to participate in medical research, 46% said to benefit mankind, 26% said to improve one's own health, 18% cited access to medical care, 17% said financial incentive, and 11% said curiosity. When asked why one might decline research participation, 38% cited fear, 24% cited lack of interest in research, 10% cited medical mistrust, 9% indicated not wanting to feel like a "guinea pig," 6% indicated lack of time, and 5% suggested privacy concerns. When asked about the meaning of informed consent, 32% did not know. Many respondents (26%) were unaware that they could withdraw from a study. Although the majority (96%) endorsed a statement about the potential benefit of research for themselves or their loved ones, a sizable proportion of respondents (49%) equated research subjects to "human guinea pigs."
Although many individuals tend to view clinical research favorably, a level of medical mistrust exists. The concerns about human experimentation and the limited understanding of human subject protections underscore the need to improve informed consent.
从作者所在急诊科的城市人口（主要为少数族裔）中收集当前意见，以评估对临床研究的看法。
对急诊科患者及访客进行了两个焦点小组访谈。这些数据为一项27项访谈的开展提供了信息，该访谈旨在考察对临床研究的看法及对人体受试者保护的了解。
作者在一家成人急诊科共访谈了172名患者及访客。研究参与者反映了患者群体的多样性：38%为非裔美国人，32%为西班牙裔，25%为白人，6%为其他族裔。当被问及为何可能选择参与医学研究时，46%的人表示是为了造福人类，26%的人表示是为了改善自身健康，18%的人提到可获得医疗服务，17%的人说是经济激励，11%的人说是出于好奇。当被问及为何可能拒绝参与研究时，38%的人表示害怕，24%的人表示对研究缺乏兴趣，10%的人表示对医疗不信任，9%的人表示不想感觉像“小白鼠”，6%的人表示没时间，5%的人提到隐私问题。当被问及知情同意的含义时，32%的人不知道。许多受访者（26%）不知道自己可以退出研究。尽管大多数人（96%）认可关于研究对自己或亲人可能有益的陈述，但相当一部分受访者（49%）将研究受试者等同于“人体小白鼠”。
尽管许多人倾向于对临床研究持积极看法，但仍存在一定程度的医疗不信任。对人体实验的担忧以及对人体受试者保护的有限理解凸显了改进知情同意的必要性。
