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少数族裔患者及其顾问对 HIV 基因治疗-造血干细胞临床试验可接受性的初步评估。

Pilot assessment of HIV gene therapy-hematopoietic stem cell clinical trial acceptability among minority patients and their advisors.

机构信息

Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, USA.

出版信息

J Natl Med Assoc. 2010 Dec;102(12):1123-8. doi: 10.1016/s0027-9684(15)30766-5.

DOI:10.1016/s0027-9684(15)30766-5
PMID:21287892
Abstract

Clinical trials involving technologically involved novel treatments such as gene therapy delivered through hematopoietic stem cells as human immunodeficiency virus (HIV) treatment will need to recruit ethnically diverse patients to ensure the acceptance among broad groups of individuals and generalizability of research findings. Five focus groups of 47 HIV-positive men and women, religious and community leaders and health providers, mostly from African American and low-income communities, were conducted to examine knowledge about gene therapy and stem cell research and to assess the moral and ethical beliefs that might influence participation in clinical trials. Three themes emerged from these groups: (1) the need for clarification of terminology and the ethics of understanding gene therapy-stem cell research, (2) strategies to avoid mistrust of medical procedures and provider mistrust, and (3) the conflict between science and religious beliefs as it pertains to gene therapy-stem cell research.

摘要

涉及技术先进的新型治疗方法的临床试验,如通过造血干细胞进行的基因治疗作为人类免疫缺陷病毒 (HIV) 的治疗方法,将需要招募不同种族的患者,以确保广泛人群的接受度和研究结果的普遍性。进行了五组 47 名 HIV 阳性的男女、宗教和社区领袖以及卫生保健提供者的焦点小组讨论,他们主要来自非裔美国人和低收入社区,目的是了解他们对基因治疗和干细胞研究的知识,并评估可能影响临床试验参与的道德和伦理信念。这些小组讨论产生了三个主题:(1)需要澄清术语和理解基因治疗-干细胞研究的伦理,(2)避免不信任医疗程序和提供者不信任的策略,以及(3)与基因治疗-干细胞研究相关的科学和宗教信仰之间的冲突。

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