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- Creators: Frow, Emma
- Creators: School for the Future of Innovation in Society
Description
The development of computational systems known as brain-computer interfaces (BCIs) offers the possibility of allowing individuals disabled by neurological disorders such as Amyotrophic Lateral Sclerosis (ALS) and ischemic stroke the ability to perform relatively complex tasks such as communicating with others and walking. BCIs are closed-loop systems that record physiological signals from the brain and translate those signals into commands that control an external device such as a wheelchair or a robotic exoskeleton. Despite the potential for BCIs to vastly improve the lives of almost one billion people, one question arises: Just because we can use brain-computer interfaces, should we? The human brain is an embodiment of the mind, which is largely seen to determine a person's identity, so a number of ethical and philosophical concerns emerge over current and future uses of BCIs. These concerns include privacy, informed consent, autonomy, identity, enhancement, and justice. In this thesis, I focus on three of these issues: privacy, informed consent, and autonomy. The ultimate purpose of brain-computer interfaces is to provide patients with a greater degree of autonomy; thus, many of the ethical issues associated with BCIs are intertwined with autonomy. Currently, brain-computer interfaces exist mainly in the domain of medicine and medical research, but recently companies have started commercializing BCIs and providing them at affordable prices. These consumer-grade BCIs are primarily for non-medical purposes, and so they are beyond the scope of medicine. As BCIs become more widespread in the near future, it is crucial for interdisciplinary teams of ethicists, philosophers, engineers, and physicians to collaborate to address these ethical concerns now before BCIs become more commonplace.
ContributorsChu, Kevin Michael (Author) / Ankeny, Casey (Thesis director) / Robert, Jason (Committee member) / Frow, Emma (Committee member) / Harrington Bioengineering Program (Contributor) / School of Mathematical and Statistical Sciences (Contributor) / Barrett, The Honors College (Contributor) / School for the Future of Innovation in Society (Contributor) / Lincoln Center for Applied Ethics (Contributor)
Created2016-05
Description
Over the last half century, global healthcare practices have increasingly relied on technological interventions for the detection, prevention, and treatment of disability and disease. As these technologies become routinized and normalized into medicine, the social and political dimensions require substantial consideration. Such consideration is particularly critical in the context of ableism, in which bodily and cognitive differences such as disabilities are perceived as deviance and demand intervention. Further, neoliberalism, with its overwhelming tendency to privatize and individualize, creates conditions under which social systems abdicate responsibility for social issues such as ableism, shifting accountability onto individuals to prevent or mitigate difference through individualized means.
It is in this context that this dissertation, informed by critical disability studies and feminist science and technology studies, examines the understanding and enactment of disability and responsibility in relation to biomedical technologies. I draw from qualitative empirical data from three distinct case studies, each focused on a different biomedical technology: prenatal genetic screening and diagnosis, deep brain stimulation, and do-it-yourself artificial pancreas systems. Analyzing semi-structured interviews and primary documents through an inductive framework that takes up elements of Grounded Theory and hermeneutic phenomenology, this research demonstrates a series of tensions. As disability becomes increasingly associated with discrete biological characteristics and medical professionals claim a growing authority over disabled bodyminds, users of these technologies are caught in a double bind of personal responsibility and epistemic invalidation. Technologies, however, do not occupy either exclusively oppressive or liberatory roles. Rather, they are used with full acknowledgement of their role in perpetuating medical authority and neoliberal paradigms as well as their individual benefit. Experiential and embodied knowledge, particular when in tension with clinical knowledge, is invalidated as a transgression of expert authority. To reject these invalidations, communities cohering around subaltern knowledges emerge in resistance to the mismatched priorities and expectations of medical authority, creating space for alternative disabled imaginaries.
It is in this context that this dissertation, informed by critical disability studies and feminist science and technology studies, examines the understanding and enactment of disability and responsibility in relation to biomedical technologies. I draw from qualitative empirical data from three distinct case studies, each focused on a different biomedical technology: prenatal genetic screening and diagnosis, deep brain stimulation, and do-it-yourself artificial pancreas systems. Analyzing semi-structured interviews and primary documents through an inductive framework that takes up elements of Grounded Theory and hermeneutic phenomenology, this research demonstrates a series of tensions. As disability becomes increasingly associated with discrete biological characteristics and medical professionals claim a growing authority over disabled bodyminds, users of these technologies are caught in a double bind of personal responsibility and epistemic invalidation. Technologies, however, do not occupy either exclusively oppressive or liberatory roles. Rather, they are used with full acknowledgement of their role in perpetuating medical authority and neoliberal paradigms as well as their individual benefit. Experiential and embodied knowledge, particular when in tension with clinical knowledge, is invalidated as a transgression of expert authority. To reject these invalidations, communities cohering around subaltern knowledges emerge in resistance to the mismatched priorities and expectations of medical authority, creating space for alternative disabled imaginaries.
ContributorsMonteleone, Rebecca (Author) / Fonow, Mary Margaret (Thesis advisor) / Ross, Heather (Committee member) / Frow, Emma (Committee member) / Michael, Katina (Committee member) / Arizona State University (Publisher)
Created2020