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This paper aims to explore the role assistive technologies (ATs) might play in helping people with autism spectrum disorder (ASD) and a concomitant responsibility deficit become more morally responsible. Toward this goal, the authors discuss the philosophical concept of responsibility, with a reliance on Nicole Vincent’s taxonomy of responsibility concepts. They then outline the ways in which ASD complicates ascriptions of responsibility, particularly responsibility understood as a capacity. Further, they explore the ways in which ATs might improve a person’s capacity so that responsibility can be properly ascribed to them. After demonstrating that although assistive technologies are likely to be able to enhance a person’s capacity in such a way so that responsibility can be ascribed to them, the authors assert that these technologies will have a number of additional effects on the other aspects of the concept of responsibility.
This interview study investigates the short- and long-term implications of incidental findings detected through brain imaging on research participants’ lives and their surroundings. For this study, nine participants of the Rotterdam Scan Study with an incidental finding were approached and interviewed. When examining research participants’ narratives on the impact of the disclosure of incidental findings, the authors identified five sets of tensions with regard to motivations for and expectations of research participation, preferences regarding disclosure, short- and long-term impacts and impacts on self and others. The paper shows: (1) that the impact of incidental findings may be greater than participants at first let on; (2) incidental findings can have significant effects on participants’ social environment; and (3) participants may not feel prepared for disclosure even if incidental findings have been discussed during the informed consent process. The authors call for investigators to be aware of research participants’ experiences and these short- and long-term impacts when designing suitable courses of action for the detection and management of incidental findings in research settings.
A growing number of studies show that a significant proportion of patients, who meet the clinical criteria for the diagnosis of the vegetative state (VS), demonstrate evidence of covert awareness through successful performance of neuroimaging tasks. Despite these important advances, the day-to-day life experiences of any such patient remain unknown. This presents a major challenge for optimizing the patient’s standard of care and quality of life (QoL). We describe a patient who, following emergence from a state of complete behavioral unresponsiveness and a clinical diagnosis of VS, reported rich memories of his experience during this time. This case demonstrates the potential for a sophisticated mental life enabled by preserved memory in a proportion of patients who, similarly, are thought to be unconscious. Therefore, it presents an important opportunity to examine the implications for patient QoL and standard of care, both during the period of presumed unconsciousness and after recovery.
Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values.
Patients with amyotrophic lateral sclerosis (ALS) face many difficult, timing-sensitive decisions over the course of their illness, weighing present versus future harms and benefits. Supplemented by interviews with people with ALS, we argue for a relational approach to understanding these decisions and their effects on identity. We highlight two critical aspects of the patient–caregiver relationship: (1) the extent to which each may rely on the other leaves their wellbeing intimately intertwined and (2) patients often require others to help with the imaginative task of considering possible futures for each therapeutic option. We show why family involvement in decisionmaking practices can be so critical, and shed light on the ways intimate others help preserve and protect people’s identities amidst the destabilizing uncertainty illness and treatment can bring.
This paper analyzes in the use of virtual reality when used to induce full-body ownership in violent offenders in order to elicit empathetic feelings by allowing them to embody the virtual body of a victim of domestic abuse. The authors explore potentially harmful effects to individuals participating in this kind of therapy and question whether consent is fully informed. The paper concludes with guidelines for ethical research and rehabilitation using this innovative technology.
In the context of the arrival of Syrians as of 2011 and the subsequent humanitarian assistance received in light of the EU–Turkey deal in 2016, there has been increased control over civil society organizations (CSOs) in Turkey. Through the case study of language education, this paper examines the relationship between the state and CSOs as shaped by the presence of Syrian refugees and how it evolved through the autonomy of state bureaucracy. It demonstrates that increased control led to the proliferation of larger projects, the deterrence of smaller CSOs, and a hierarchy between organizations prioritizing those that are aligned with the state. It argues that this policy is not only the result of the increased lack of trust between state and civil society but also an attempt to channel funds through state institutions to handle an unprecedented number of refugees while externalizing some of its functions. At the same time, this emerging relationship effectively allows the state to avoid making long-term integration policies and facing growing tensions among the public. This study is based on a qualitative study encompassing interviews with state officials as well as stakeholders in different types of CSOs that deliver language education for adults.