Alzheimer disease and associated disorders
-
Conflicts of interest and other ethical dilemmas occur in Alzheimer disease (AD) patient care and research but often are underrecognized by physicians. One or more bioethical principles of autonomy, confidentiality, truth telling, beneficence, and justice, which apply to demented individuals as they do to other patients, may conflict in everyday clinical situations. For example, when demented patients wish to continue driving, autonomy (the patient's right to self-determination) conflicts with beneficence (the duty to promote the patient's welfare). ⋯ Full disclosure of financial interests increasingly is an accepted requirement in the conduct of biomedical research. In AD, less obvious potential conflicts of interest arise when physicians recruit their patients for antidementia drug trials sponsored by a pharmaceutical company (that provides the physician with research funding) or when investigators fail to acknowledge the patient's withdrawal of assent when attempting to complete a research protocol. The recognition of both financial and nonfinancial conflicts should lead to measures to reduce bias, which in turn will improve the integrity of research findings and promote patient welfare.
-
Informed consent is a fundamental ethical concern for dementia research that involves the participation of human subjects. The central dilemma is how to obtain valid informed consent from a population of potential subjects who are losing their decision-making capacity while still providing adequate protection for this vulnerable group of people. ⋯ This article examines the advance consent model, contrasts the life-sustaining treatment arena with dementia research issues, and suggests that written advance consent should not be required to conduct dementia research. Instead, an argument is presented in favor of a more informal advance consent process that builds upon the existing practice of using subject assent plus proxy consent.
-
Alzheimer Dis Assoc Disord · Jan 1994
ReviewProxy decision making in Alzheimer disease research: durable powers of attorney, guardianship, and other alternatives.
Individuals in advanced stages of Alzheimer disease are incapable of giving or refusing legally or ethically valid consent to participation in biomedical and behavioral research protocols. Yet, many research protocols aimed at better treatment of persons with this disease can be conducted usefully only if such individuals are themselves involved as human subjects. ⋯ This article discusses several potential proxy decision-making mechanisms regarding research participation in light of the relevant legal and ethical concerns. The analysis is organized according to a matrix approach that takes into account procedural and substantive questions as well as the specific type of research protocol under consideration.