File(s) under permanent embargo
Ethical considerations for deep brain stimulation and other invasive neurotechnological trials in people with Alzheimer's disease
thesisposted on 2023-05-28, 09:12 authored by Via‚àö¬±a, JNM
Alzheimer's disease is the leading cause of dementia worldwide, affecting more than 30 million people. FDA-approved drugs only provide temporary relief to memory problems, and no disease-modifying therapies are currently available. As such, different therapeutic modalities are being investigated to address the biological and/or cognitive manifestations of the disease. A number of these therapies are highly invasive and require stereotactic surgery, potentially posing a greater risk of harms to a vulnerable population with cognitive deficits that limit their ability to provide fully informed consent. Using an interdisciplinary and pragmatic approach to bioethical inquiry, this dissertation examines studies on deep brain stimulation in people with Alzheimer's disease, reviewing clinical trials and relevant animal studies to highlight pressing ethical concerns that ongoing and forthcoming trials need to address. By having three major publications during the course of the PhD as the main chapters, This thesis aims to enumerate ethical issues that encompass the genetic, neurobiological, cognitive, individual, and societal dimensions of deep brain stimulation for Alzheimer's disease. These ethical considerations can then be extended into other forms of novel neurosurgical trials such as cell implantation and gene therapy. Finally, this thesis incorporates other publications during the PhD to illustrate further conundrums on the use of deep brain stimulation and highlight directions for future bioethics research on the use of invasive neurotechnologies for dementia in terms of the importance of genetic underpinnings, clinical translation issues, communication of research objectives, media portrayal, and implications on criminal responsibility.
Rights statementCopyright 2019 the author Chapter 3 contains the published article: Gilbert, F., Via‚àö¬±a, J. N., 2018. A personal narrative on living and dealing with psychiatric symptoms after DBS surgery. Copyright Copyright Johns Hopkins University Press. This article was first published in Narrative inquiry in bioethics 8.1 (2018), 66-77. Reprinted with permission by John Hopkins University Press Chapter 3 contains a published article. Reprinted by permission from Springe Nature: Neuroethics. Gilbert, F., Via‚àö¬±a, J. N. M., Ineichen, C., 2018. Deflating the DBS causes personality changes‚ÄövÑvp. Copyright Springer Nature B.V. 2018 Chapter 5 contains a published article. Reprinted from Journal of Alzheimer's disease, Vol 58(2), Via‚àö¬±a, J., N., l., M., Bittlinger, M., Gilbert, F., Ethical considerations for deep brain stimulation trials in patients with early-onset Alzheimer's disease, 289-301, Copyright 2017, with permission from IOS Press. The publication is available at IOS Press through http://dx.doi.org/10.3233/JAD-161073 Chapter 6 contains a published article. It is: Via‚àö¬±a, J. N. M., Gilbert, F., 2018, Deep brain stimulation for people with Alzheimer's disease: anticipating potential effects on the tripartite self, Dementia, 18(7-8), 2836‚Äö-2855, Copyright Copyright 2018 the authors DOI: 10.1177/1471301218761147