Karlawish, Jason
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Bioethics and Medical Ethics
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Faculty Member
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Publication Voting by Older Adults with Cognitive Impairments(2008-02-01) Karlawish, JasonThis presidential election year reminds us of the importance of each vote and of the integrity of the electoral process. Recent elections have been decided by very narrow margins. In this context, the voting rights and capacity of persons with dementia warrant attention. About 4.5 million Americans currently live with dementia. Whether these citizens should vote raises a host of ethical, legal, and practical issues. At what point does someone lose the capacity to vote, and who decides? What kinds of assistance should these voters get, and who should provide it? And how can the voting rights of residents in long-term care facilities be protected?Publication Addressing the Ethical, Legal, and Social Issues Raised by Voting by Persons with Dementia(2004-09-01) Karlawish, Jason H; Bonnie, Richard J; Appelbaum, Paul S; Lyketsos, Constantine; James, Bryan; Knopman, David; Patusky, Christopher; Kane, Rosalie A; Karlan, Pamela SThis article addresses an emerging policy problem in the United States participation in the electoral process by citizens with dementia. At present, health care professionals, family caregivers, and long-term care staff lack adequate guidance to decide whether individuals with dementia should be precluded from or assisted in casting a ballot. Voting by persons with dementia raises a series of important questions about the autonomy of individuals with dementia, the integrity of the electoral process, and the prevention of fraud. Three subsidiary issues warrant special attention: development of a method to assess capacity to vote; identification of appropriate kinds of assistance to enable persons with cognitive impairment to vote; and formulation of uniform and workable policies for voting in long-term care settings. In some instances, extrapolation from existing policies and research permits reasonable recommendations to guide policy and practice. However, in other instances, additional research is necessary.Publication Minding the Aging Brain: Are We Ready for Personalized Medicine?(2014-02-01) Karlawish, Jason; Green, Robert CPublication Unwrapping a Fragile Concept(2014-04-01) Karlawish, JasonPublication Ethical Challenges in Preclinical Alzheimer's Disease Observational Studies and Trials: Results of the Barcelona Summit(2016-05-01) Molinuevo, Jose L.; Cami, Jordi; Carne, Xavier; Carrillo, Maria C.; Georges, Jean; Isaac, Maria B.; Khachaturian, Zaven; Kim, Scott Y. H.; Morris, John C.; Pasquier, Florence; Ritchie, Craig; Sperling, Reisa; Karlawish, JasonAlzheimer's disease (AD) is among the most significant health care burdens. Disappointing results from clinical trials in late-stage AD persons combined with hopeful results from trials in persons with early-stage suggest that research in the preclinical stage of AD is necessary to define an optimal therapeutic success window. We review the justification for conducting trials in the preclinical stage and highlight novel ethical challenges that arise and are related to determining appropriate risk-benefit ratios and disclosing individuals' biomarker status. We propose that to conduct clinical trials with these participants, we need to improve public understanding of AD using unified vocabulary, resolve the acceptable risk-benefit ratio in asymptomatic participants, and disclose or not biomarker status with attention to study type (observational studies vs clinical trials). Overcoming these challenges will justify clinical trials in preclinical AD at the societal level and aid to the development of societal and legal support for trial participants.Publication Ethics of Genetic and Biomarker Test Disclosures in Neurodegenerative Disease Prevention Trials(2015-04-07) Kim, Scott Y. H; Karlawish, Jason; Berkman, Benjamin EOBJECTIVE: Prevention trials for neurodegenerative diseases use genetic or other risk marker tests to select participants but there is concern that this could involve coercive disclosure of unwanted information. This has led some trials to use blinded enrollment (participants are tested but not told of their risk marker status). We examined the ethics of blinded vs transparent enrollment using well-established criteria for assessing the ethics of clinical research. METHODS: Normative analysis applying 4 key ethical criteria-favorable risk-benefit ratio, informed consent, fair subject selection, and scientific validity-to blinded vs transparent enrollment, using current evidence and state of Alzheimer disease (AD) and other prevention trials. RESULTS: Current evidence on the psychosocial impact of risk marker disclosure and considerations of scientific benefit do not support an obligation to use blinded enrollment in prevention trials. Nor does transparent enrollment coerce or involve undue influence of potential participants. Transparent enrollment does not unfairly exploit vulnerable participants or limit generalizability of scientific findings of prevention trials. However, if the preferences of a community of potential participants would affect the rigor or feasibility of a prevention trial using transparent enrollment, then investigators are required by considerations of scientific validity to use blinded enrollment. CONCLUSIONS: Considerations of risks and benefits, informed consent, and fair subject selection do not require the use of blinded enrollment for AD prevention trials. Blinded enrollment in AD prevention trials may sometimes be necessary because of the need for scientific validity, not because it prevents coercion or undue influence.Publication Voting by Elderly Persons with Cognitive Impairment: Lessons from Other Democratic Nations(2007-01-01) Karlawish, Jason; Bonnie, Richard JPublication Assessing the Capacity to Make Everyday Decisions: A Guide for Clinicians and an Agenda for Future Research(2008-01-23) Lai, James M; Karlawish, JasonAssessing the capacity of patients to make decisions about their functional problems has substantial ethical, clinical, and financial implications. The growing population of older adults with cognitive impairment either in the community or in long-term care and medical facilities increase the importance of adequately assessing this capacity. This review examines the current approaches to making this assessment, demonstrates how they are incomplete, and considers potential approaches for improving these evaluations. Future research should develop and validate methods to identify patients with impaired capacity to make everyday decisions. These data will supplement functional, cognitive, and medical assessments.Publication Living with Dementia: Caregiver Perspectives(2002-06-19) Karlawish, JasonAbout four million Americans currently live with Alzheimer’s disease (AD) or related forms of dementia. Because the disease process impairs language, insight, and judgment, family members become “caregivers.” These caregivers, either in part or in full, often make decisions on patients’ behalf. This Issue Brief summarizes a series of studies that describe how caregivers make decisions for AD patients, and caregiver perspectives on the quality of life for relatives with AD.Publication Measuring Decision-Making Capacity in Cognitively Impaired Individuals(2008-12-01) Karlawish, JasonCognitive and functional losses are only part of the spectrum of disability experienced by persons with Alzheimer's disease and related dementias. They also experience losses in the ability to make decisions, known as decision-making capacity. Researchers have made substantial progress in developing a model of capacity assessment that rests upon the concept of the 4 decision-making abilities: understanding, appreciation, choice and reasoning. Empirical research has increased our understanding of the effects of late-life cognitive impairment on a person's ability to make decisions. This review examines studies of the capacity to consent to treatment, research and the management of everyday functional abilities. The results illustrate the clinical phenotype of the patient who retains the capacity to consent. They also suggest that measures of capacity can improve how researchers measure the benefits of cognitive enhancements and stage dementia.