{"title":"Research Advance Directives: Ethical Implications for Persons with Alzheimer's Disease, and for the Families of Elderly Dementia Patients.","authors":"Dean Evan Hart","doi":"10.1017/jme.2025.10185","DOIUrl":null,"url":null,"abstract":"<p><p>As both human longevity and diagnostic ability improve, more individuals are being diagnosed with Alzheimer's dementia disease (Alzheimer's). Yet there is a paucity of new Alzheimer's research trials. One obstacle to research is the large number of Alzheimer's patients deemed incapable of providing informed consent for clinical research. Research advance directives (RADs) offer patients the opportunity to provide informed consent before incapacity occurs. However, critics question whether RADs guarantee informed consent, claiming that due to the nature of the disease, the consenting agent is no longer the same person after becoming incapacitated. This paper assesses the debate while using a conception of personhood, informed by the latest Alzheimer's research, which does not reduce the concept of personhood to psychological capacities. It explains how personal identity can persist despite Alzheimer's, such that RADs can and should suffice for informed consent.</p>","PeriodicalId":50165,"journal":{"name":"Journal of Law Medicine & Ethics","volume":" ","pages":"1-9"},"PeriodicalIF":1.7000,"publicationDate":"2025-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Law Medicine & Ethics","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1017/jme.2025.10185","RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ETHICS","Score":null,"Total":0}
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Abstract
As both human longevity and diagnostic ability improve, more individuals are being diagnosed with Alzheimer's dementia disease (Alzheimer's). Yet there is a paucity of new Alzheimer's research trials. One obstacle to research is the large number of Alzheimer's patients deemed incapable of providing informed consent for clinical research. Research advance directives (RADs) offer patients the opportunity to provide informed consent before incapacity occurs. However, critics question whether RADs guarantee informed consent, claiming that due to the nature of the disease, the consenting agent is no longer the same person after becoming incapacitated. This paper assesses the debate while using a conception of personhood, informed by the latest Alzheimer's research, which does not reduce the concept of personhood to psychological capacities. It explains how personal identity can persist despite Alzheimer's, such that RADs can and should suffice for informed consent.
期刊介绍：
Material published in The Journal of Law, Medicine & Ethics (JLME) contributes to the educational mission of The American Society of Law, Medicine & Ethics, covering public health, health disparities, patient safety and quality of care, and biomedical science and research. It provides articles on such timely topics as health care quality and access, managed care, pain relief, genetics, child/maternal health, reproductive health, informed consent, assisted dying, ethics committees, HIV/AIDS, and public health. Symposium issues review significant policy developments, health law court decisions, and books.
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