Ethical Aspects of Dementia Research

描述(由申请者提供)：本建议书寻求一位有指导的科学家 研究伦理学发展奖关注的伦理问题 包括生物医学研究中的痴呆症患者。研究计划 由三个相关的项目组成，分别使用定性和定量 研究方法。第一个项目将描述调查人员的程序 用于评估痴呆症患者的决策能力并获得信息 同意参与研究。第二个项目考察了 早期痴呆症患者及其代理人关于他们的 对患者参与研究的态度，代孕的作用 决策者和患者是否参与研究改变 他们的态度。第三个项目检验方法的可比性。 目前用于评估对痴呆症给予知情同意的能力 研究。 此应用程序的职业发展组件包括几个 为获得独立所需的培训而开展的活动 调查员：(1)生物伦理学理论和原则的正式课程 以及它们在痴呆症患者研究中的应用，(2)一段时间 观察临床医生对痴呆患者的评估和治疗，(3)观察工作 IRB委员会；(4)参加研讨会、会议和研究 会议的重点是人体研究的伦理问题，(5) 质的研究方法的培训和自学；(6)定期 与在研究伦理、痴呆症方面有专长的导师互动 研究和临床护理以及定性研究方法。 三位导师，均为约翰·霍普金斯医疗机构的教职员工 具备专业知识的应聘者将为应聘者提供建议。Dr。 南希·卡斯将担任首席导师，并为 候选人在研究道德方面的培训。彼得·拉宾斯博士将担任 痴呆症和临床护理的研究顾问和专家 患有痴呆症。Linda Fogarty博士将提供定性方面的专业知识 研究方法及其在候选人研究项目中的应用。 拟议的培训和研究经验将使应聘者能够 开始职业生涯，专注于研究的道德行为，涉及 认知障碍并解决许多相关的悬而未决的问题 将缺乏知情同意能力的人包括在内 研究参与度。

DESCRIPTION (provided by applicant): This proposal seeks a Mentored Scientist Development Award in Research Ethics focused on the ethical aspects of including people who have dementia in biomedical research. The research plan consists of three related projects, which use qualitative and quantitative research methods. The first project will describe the procedures investigators use to assess decisional capacity of dementia patients and obtain informed consent for research participation. The second project examines the opinions of people with early dementia and their surrogates decision maker regarding their attitudes toward the patient's participation in research, the role of surrogate decision makers and whether the patient's participation in research changes their attitudes. The third project examines the comparability of methods currently in use for assessing capacity to give informed consent for dementia research. The career development component of this application includes several activities for obtaining the training needed to become an independent investigator: (1) formal courses on the theories and principles of bioethics and their application to research with dementia patients, (2) a period of observing clinicians assess and treat dementia patients, (3) observing the work of an IRB committee, (4) participation in seminars, conferences and research meetings focused on the ethical aspects of research with human subjects, (5) training and self-study in qualitative research methods, and (6) regular interaction with mentors who have expertise in research ethics, dementia research and clinical care and qualitative research methods. Three mentors, all faculty members of the Johns Hopkins Medical Institutions with expertise in complimentary disciplines, will advice the candidate. Dr. Nancy Kass will be the principal mentor and provide guidance for the candidate's training in research ethics. Dr. Peter Rabins will serve as a research advisor and an expert in dementia and the clinical care of people who suffer from dementia. Dr. Linda Fogarty will provide expertise in qualitative research methods and their application to the candidate's research projects. The proposed training and research experiences will enable the candidate to launch a career focused on the ethical conduct of research involving the cognitively impaired and to address many of the unanswered questions relevant to the inclusion of people who lack capacity to give informed consent for research participation.