Ethical Aspects of Dementia Research

痴呆症研究的伦理问题

• 批准号: 6435591
• 负责人: Betty E Black
• 金额: $ 8.41万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2002
• 资助国家: 美国
• 起止时间: 2002-04-01 至 2006-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6435591
• 关键词: aging; attitude; behavioral /social science research tag; clinical research; decision making; dementia; education; emotional dependency; ethics; geriatrics; health behavior; health science research analysis /evaluation; human old age (65+); human subject; informed consent; meeting /conference /symposium; mental disorder diagnosis; patient safety /medical error; psychological aspect of aging; training

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.

描述（由申请人提供）：该提案寻求一位指导科学家 研究伦理发展奖侧重于伦理方面 包括生物医学研究中患有痴呆症的人。研究计划 由三个相关项目组成，这些项目使用定性和定量 研究方法。第一个项目将描述调查员的程序 用于评估痴呆症患者的决策能力并获取信息 同意参与研究。第二个项目征求意见 早期痴呆症患者及其代理决策者 对患者参与研究的态度、代理人的角色 决策者以及患者参与研究是否发生变化 他们的态度。第三个项目检查方法的可比性 目前用于评估对痴呆症给予知情同意的能力 研究。 该应用程序的职业发展部分包括几个 获得成为独立人士所需的培训的活动 研究者：（1）生命伦理学理论和原理的正规课程 及其在痴呆症患者研究中的应用，（2）一段时期 观察临床医生评估和治疗痴呆患者，（3）观察工作 IRB 委员会的成员，(4) 参加研讨会、会议和研究 会议重点讨论人类受试者研究的伦理方面，(5) 定性研究方法的培训和自学，以及（6）定期 与具有研究伦理、痴呆症专业知识的导师互动 研究和临床护理以及定性研究方法。 三位导师，均为约翰霍普金斯大学医疗机构教职人员 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 (Nancy Kass) 将担任首席导师，并为 候选人的研究伦理培训。 Peter Rabins 博士将担任 研究顾问和痴呆症及临床护理专家 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候选人能够 开展专注于研究道德行为的职业，涉及 认知障碍并解决许多悬而未决的相关问题 将缺乏能力给予知情同意的人纳入其中 研究参与。