Visual cortical prostheses (VCPs) have the potential to provide artificial vision for visually impaired persons. However, the nature and utility of this form of vision is not yet fully understood. Participants in the early feasibility trial for the Orion VCP were interviewed to gain insight into their experiences using artificial vision, their motivations for participation, as well as their expectations and assessments of risks and benefits. Analyzed using principles of grounded theory and an interpretive description approach, these interviews yielded six (...) themes, including: the irreducibility of benefit to device functionality, mixed expectations for short-term device functionality and long-term technological advancement of visual prostheses, and a broad range of risks, concerns, and fears related to trial participation. We argue that these narratives motivate a nuanced set of ethical considerations related to the complex relationship between functionality and benefit, the intersection of user experience with disability justice, and the import of expectations and indirect risks on consent. (shrink)

In this paper, I argue that disabled people have a right to assistive technology, but this right cannot be grounded simply in a broader right to health care or in a more comprehensive view like the capabilities approach to justice. Both of these options are plagued by issues that I refer to as the problem of constriction, where the theory does not justify enough of the AT that disabled people should have access to, and the problem of overextension, where the (...) theory cannot adequately identify an upper limit on the AT that people have a right to. As an alternative to these justificatory frameworks, I argue that disabled people are owed access to AT at the expense of nondisabled people as a matter of compensatory justice. That is, I defend the position that disabled people are owed AT as part of due compensation for the harms they experience from being disadvantaged by society’s dominant cooperative scheme and the violation of their right to equality of opportunity that such disadvantage entails. I also propose a method for identifying an upper limit to what this right to AT requires. In this way, I argue that compensatory justice avoids both the problem of constriction and the problem of overextension. (shrink)

Despite several decades of debate, the concept of disease remains hotly contested. The debate is typically cast as one between naturalism and normativism, with a hybrid view that combines elements of each staked out in between. In light of a number of widely discussed problems with existing accounts, some theorists argue that the concept of disease is beyond repair and thus recommend eliminating it in a wide range of practical medical contexts. Any attempt to reframe the ‘disease’ discussion should answer (...) the more basic sceptical challenge, and should include a meta-methodological critique guided by our pragmatic expectations of what the disease concept ought to do given that medical diagnosis is woven into a complex network of healthcare institutions. In this paper, we attempt such a reframing, arguing that while prevailing accounts do not suffer from the particular defects that prominent critics have identified, they do suffer from other deficits—and this leads us to propose an amended hybrid view that places objectivist approaches to disease on stronger theoretical footing, and satisfies the institutional-ethicaldesiderataof a concept of disease in human medicine. Nevertheless, we do not advocate a procrustean approach to ‘disease’. Instead, we recommend disease concept pluralism between medical and biological sciences to allow the concept to serve the different epistemic and institutional goals of these respective disciplines. (shrink)

The development of gene therapy has always come with the expectation that it will offer a cure for various disorders, of which hemophilia is a paradigm example. However, although the term is used regularly, it is unclear what exactly is meant with “cure”. Therefore, the aim of this paper is to analyse how the concept of cure is used in practice and evaluate which of the interpretations is most suitable in discussions surrounding gene therapy. We analysed how cure is used (...) in four different medical fields where the concept raises discussion. We show that cure can be used in three different ways: cure as normalization of the body, cure as obtaining a normal life, or cure as a change in identity. We argue that since cure is a practical term, its interpretation should be context-specific and the various uses can exist simultaneously, as long as their use is suitable to the function the notion of cure plays in each of the settings. We end by highlighting three different settings in the domain of hemophilia gene therapy in which the term cure is used and explore the function(s) it serves in each setting. We conclude that in the clinical application of gene therapy, it could be better to abandon the term cure, whereas more modest and specified definitions of cure are required in the context of health resource allocation decisions and decisions on research funding. (shrink)

The rise of mobile communication applications and technologies presents promising therapeutic and accessibility-related interventions for neurodivergent users. However, top-down approaches in human-computer interaction research often prioritize the needs and goals of allistic and neurotypical researchers and secondary stakeholders in media creation. Furthermore, media technologies are created with a one-size-fits-all approach, with the intent of rehabilitating or curing neurodivergent ways of being. This article imagines neuroqueer technoscience as an extension of crip technoscience that amplifies new styles of relationality, self-expression, and communication (...) practices within the development of information and communication technologies. Using an interdisciplinary framework informed by crip technoscience and human-computer interaction research, the author presents three tenets for mediating neuroqueer subjectivities. (shrink)