Ethical Aspects of Dementia Research

描述（由申请人提供）：本提案寻求一名指导科学家 研究伦理发展奖侧重于以下方面的伦理问题： 包括那些患有痴呆症的人研究计划 包括三个相关的项目，使用定性和定量 研究方法第一个项目将描述调查程序 用于评估痴呆患者的决策能力，并获得知情的 同意参与研究。第二个项目审查了 患有早期痴呆症的人及其代理人 对患者参与研究的态度，代理人的作用 决策者以及患者参与研究的情况是否发生变化 他们的态度第三个项目审查各种方法的可比性 目前用于评估给予痴呆症知情同意的能力 research. 此应用程序的职业发展组件包括几个 获得成为独立律师所需培训的活动 调查员：（1）关于生物伦理学理论和原则的正式课程 及其在痴呆患者研究中的应用，（2）一段时间， 观察临床医生评估和治疗痴呆患者，（3）观察工作 （4）参加研讨会、会议和研究 会议重点关注人类受试者研究的伦理问题，（5） 在定性研究方法方面的培训和自学，以及（6）定期 与具有研究伦理学、痴呆症、 研究和临床护理以及定性研究方法。 三位导师，都是约翰霍普金斯医疗机构的教员 具有互补学科的专业知识，将为候选人提供建议。博士 南希卡斯将是主要的导师，并提供指导， 候选人在研究伦理方面的培训。彼得·拉宾斯博士将担任 研究顾问和专家在痴呆症和临床护理的人谁 患有痴呆症。琳达福格蒂博士将提供定性分析方面的专业知识， 研究方法及其在候选人研究项目中的应用。 建议的培训和研究经验将使候选人能够 启动职业生涯的重点是道德行为的研究，涉及 认知受损，并解决许多悬而未决的问题， 将缺乏能力的人纳入知情同意， 研究参与。

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.