Ethical Aspects of Dementia Research

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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.