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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Panel: Equity and Justice in Dementia Care: Perspectives on Ethical, Health, and Policy Implications of Tests and Treatments for Alzheimer's Disease and Related Dementias


ELSIcon2022 • Panel Session 13 • June 2, 2022

Hadley Stevens Smith, Emily Largent, Cheng Chen, Kathryn Phillips

Advances in genetic and biomarker-based risk prediction, diagnosis, and treatment for Alzheimer's disease (AD) and AD-related dementias (AD/ADRD) necessitate ethically informed decision making in multiple spheres. Recent innovations have highlighted issues of equity and justice related to caring for an aging population, including disparities in research and treatment benefit, spikes in Medicare premiums, unequal access to affordable long-term care, and inadequate caregiver support. Accurate assessment of all relevant benefits and harms is central to understanding the health and economic outcomes of tests and treatments and necessary to inform decision making about research and policy. Policy solutions that promote equitable and sustainable dementia research, recognizing patient and family perspectives, and insurance coverage of tests and treatments are a national priority. This panel will address a central question: What is equitable and just care for individuals living with, or at risk for, dementia in an era of rapidly advancing predictive tests and treatments? A wide range of perspectives, from individual patients to society, will be represented. Panelists will introduce conceptual frameworks related to their research area and present novel qualitative and quantitative data. Panelists have dementia-specific expertise in ethics, health policy, health economics, and health care payer policy. Early career researchers' work is highlighted.


Access to genetic screening and therapies

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