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Perspectives on the translational trajectory of novel biotechnologies for neurodegenerative disease Benjaminy, Shelly

Abstract

The translation of novel brain technologies from the bench to the bedside has been characterized by a tension between priorities to promote rapid access to experimental interventions and the utilitarian pursuit of their evaluation with rigorous and time-intensive research. Through three studies conducted within the scope of this dissertation, I focus on a central research question: What are the perspectives of stakeholders about the translation of novel biotechnologies for neurodegenerative disease? Harnessing the strength of pragmatic neuroethics, I address this research question using both qualitative and quantitative analyses. In the first study, I explore the perspectives of patients with multiple sclerosis (MS) about the unproven but highly publicized chronic cerebrospinal venous insufficiency (CCSVI) intervention and the impact of its controversial trajectory on stem cell research. I find that patients are disappointed about the divestment of funds from other areas of research to support CCSVI trials, but maintain enduring hopes for future neurotechnological advancements, including stem cell research. In the second study, I examine how the news media represent timeframes for research and development of stem cell interventions for MS and other neurodegenerative diseases. I find that news articles celebrate the benefits of stem cell research with little context of its caveats. In contrast to prior studies, however, I discover that they also conscientiously convey caution about stem cell tourism and describe a lengthy trajectory between research and clinical availability of therapeutics. In the third study, I explore the perspectives of patients with MS and clinicians responsible for their care about the pace of research and development for stem cell interventions. Here I describe the urgency that patients feel to access stem cell interventions and their desire to learn more about the research process. Clinicians suggest strategies for dialogue with their patients that can clarify translational timeframes and inform hopes. Overall, the findings bring together the voices of key stakeholders and support a commitment to socially minded translation of novel neurotechnologies for neurodegenerative disease.

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