Informed consent in gene transfer research

基因转移研究中的知情同意

• 批准号: 6681623
• 负责人: Benjamin Simon Wilfond
• 金额: --
• 依托单位: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/6681623
• 关键词: behavioral /social science research tag; clinical research; clinical trials; gene therapy; health science research analysis /evaluation; human subject; informed consent; interview; patient care personnel relations

The purpose of this study to is to understand how the participants (Principle Investigators (PIs), Study Coordinators (SC), Subjects, IRBS) understand the benefits of gene transfer research. The study ill focus on the therelationship between research and treatment, the dual roles of researcher and clinicain, and the expectations of benefit by the participants. The study includes intervews with PIs, SCs, Subjects, and IRB Chairs. It also includes an analysis of gene transfer consent forms. In the last year the inverviews have been completed and the consent form coding completed. We are currently involved in the analysis of the data

这项研究的目的是了解参与者(首席调查员(PI)、研究协调员(SC)、受试者、IRBs)如何理解基因转移研究的好处。这项研究将集中在研究和治疗之间的关系，研究人员和临床医生的双重角色，以及参与者对受益的期望。这项研究包括与PI、SC、受试者和IRB主席的面谈。它还包括对基因转移同意书的分析。在过去的一年里，已经完成了倒置意见，并完成了同意书编码。我们目前正在对数据进行分析。