Neuroethics explores the ethical paradigms surrounding neuroscience as it relates to new technologies, research and improved understanding of the brain and nervous system. A study within the Department of Neurosurgery includes human participants who have experienced a stroke. Participants get brain surgery to have intracranial electrodes implanted, have time for surgical recovery, then participate in follow up study sessions to gather neural and other data as they engage in rehabilitation therapy while being recorded and stimulated via the electrodes. From a neuroethics view, there is a limited understanding of why eligible people would choose to opt in or out of participating in this or similar studies. The neuroethics research group has done prior work to explore motivations for people who choose to participate in research and understand their experiences with implantable neural device research. However, few studies explore motivations surrounding a person’s decision to decline an invitation to participate in a research trial for which they are eligible. This project presents a literature review of potential  motivating factors in prospective participants’ decision to decline or participate in research. We will present how this literature review is used to construct a survey instrument to be administered to study decliners and a data analysis framework to interpret the survey results that we will gather. The results will have broad implications for understanding how people living with neurological conditions think about the potential risks and benefits of neurotechnologies that directly modify brain activity.

Given a set of goods and a set of individuals, one might ask what the optimal way to divide the goods among the individuals is. This is known as a bargaining problem. Bargaining theory is a set of mathematical tools which can help us answer these sorts of questions. Assuming that the individuals’ preferences can be represented numerically, a bargaining solution concept tells us the optimal division of goods, called the solution to the bargaining problem, among the individuals. In some cases, solutions to bargaining problems involve randomly choosing how some or all of the goods are distributed. Of interest to us is the fact that the solutions to these bargaining problems may fail to be continuous, in a certain sense. If the strengths of the individuals’ preferences are changed even slightly, it may be the case that the optimal division of goods changes drastically. Broadly speaking, the goal of this project is to understand when and why this phenomenon occurs. I begin by formally defining what it means for the preferences of the individuals, as well as the sets of solutions to the associated bargaining problems, to be close to one another. I then prove that under certain conditions, small changes in individuals’ preferences cannot result in large changes in bargaining solutions. I am currently still working on proving that if these conditions fail to hold, then one can slightly modify the individuals’ preferences in such a way that the associated bargaining solutions change quite substantially. We hope that these results can be applied to justify randomization amongst options in collective decision making problems, particularly those related to experimental design.

Deep brain stimulation (DBS) is being studied as a potential treatment for Alzheimer’s disease (AD). Currently, relatively little is known about prospective users’ attitudes toward the surgically invasive treatment. In 2021, our team conducted a qualitative interview study to explore the views of individuals considered at risk for dementia. Respondents were considered at risk for dementia due to factors including family history, genetic biomarkers, or mild cognitive impairment. They were asked for their perspectives on the hypothetical use of DBS devices to assist individuals living with dementia. Transcripts from 34 interviews were coded and analyzed using ATLAS.ti, with attention to users’ reported interest in the device as well as several main themes that emerged related to participant concerns. Of the 34 participants, one expressed low interest in the DBS device, four expressed a high level of interest, and the vast majority (29) expressed ambivalent interest (a combination of excitement about the treatment and nuanced concerns about various potential impacts). Five thematic areas of concern emerged: timing of implantation, skepticism, invasiveness of the surgery, impact of memory loss, and the value of forgetting. The responses revealed that prospective users have nuanced considerations that inform their interest in neural devices to treat memory loss. Though the majority felt positively about potential surgical treatments for memory loss, they raised concerns about complex issues that may arise related to consent, surgical complications, and losing the ability to forget. User-centered design recommends early input from potential users of devices to ensure that their needs and values are recognized in the design process. As clinical trials for DBS in AD continue, understanding the values and concerns of prospective users will be vital for both the design process and successful clinical trials.