Alongside clinical practice, medical schools now confront mounting reasons to examine nontraditional approaches to ethics. Increasing awareness of systems of oppression and their effects on the experiences of trainees, patients, professionals, and generally on medical care, is pushing medical curriculum into an unfamiliar territory. While there is room throughout medical school to take up these concerns, ethics curricula are well-positioned to explore new pedagogical approaches. Feminist ethics has long addressed systems of oppression and broader structures of power. Some of its (...) established concepts can offer distinct value as medical climates change and adapt in response to increased awareness of the experiences of marginalized individuals and populations. In this essay, we offer a set of concepts from feminist ethics that have a fundamental role to play in medical school curriculum: relationality, relational autonomy, and epistemic justice. Though these concepts are not exhaustive, they can be taught in tandem with the concepts that have historically grounded ethics education in medical school, such as autonomy and beneficence. Ultimately, we contend that these concepts hold particular value in ethics curriculum insofar as they diversify mainstream ethical approaches, directly address the pervasiveness of systems of oppression in medicine, and recognize the voices and concerns that may be marginalized in standard approaches. (shrink)
Background: Patients undergoing invasive neurosurgical procedures offer researchers unique opportunities to study the brain. Deep brain stimulation patients, for example, may participate in research during the surgical implantation of the stimulator device. Although this research raises many ethical concerns, little attention has been paid to basic studies, which offer no therapeutic benefits, and the value of patient-participant perspectives.Methods: Semi-structured interviews were conducted with fourteen individuals across two studies who participated in basic intraoperative research during their deep brain stimulator surgery. Interviews (...) explored interpretations of risks and benefits, enrollment motivations, and experiences of participating in awake brain research. Reflexive thematic analysis was conducted.Results: Seven themes were identified from participant narratives, including robust attitudes of trust, high valuations of basic science research, impacts of the surgical context, and mixed experiences of participation.Conclusion: We argue that these narratives raise the potential for a translational misconception and motivate intraoperative re-consent procedures. (shrink)
It is often assumed that two linguistic agents can come to understand one another in part because they use the same words. That is, many philosophical theories of communication posit an intersubjective same-word relation. However, giving an account of this relation is complicated by what I call “The Variation Problem”—a problem resulting from the fact that the same word can be pronounced differently. In this paper, I first argue that previous models of the same-word relation, including Kaplanian and Chomskyan models, (...) fail to escape The Variation Problem. I then propose a new model on which the same-word relation is grounded in a particular kind of social relation that holds between the speaker and the audience. On this model, using the same word requires not that agents make the same sounds, but that they coordinate their internal linguistic representations. (shrink)
Medicalization is the process by which conditions, for example, intellectual disability, hyperactivity in children, and posttraumatic stress disorder, become understood as medical disorders. During this process, the medical community often collectively assigns a label to a condition and consequently to those who would be said to have the disorder. We argue that there are at least two previously overlooked ways in which this linguistic practice may be wrongful, and sometimes, unjust: first, when the initial introduction of a medical label is (...) done without the participation of those individuals who are being labelled, and second, when attempts by those individuals to renegotiate the labels are thwarted or otherwise rendered ineffective. In both cases, we argue, individuals are unfairly excluded from a linguistic practice that would be valuable for them to participate in. Furthermore, we argue that their exclusion depends in part on the authority of the medical institution to ignore their demands for participation. In making this case, we will propose the more general claim that participating in the linguistic processes of determining and renegotiating the words that will be used to describe oneself is an exercise of linguistic agency, a capacity that has both instrumental and intrinsic value. (shrink)
Motivated by exploitation concerns, we argue for the importance of participant engagement in basic human intracranial electrophysiology research. This research takes advantage of unique neurosurgical opportunities to better understand complex systems of the human brain, but it also exposes participants to additional risks without immediate therapeutic intent. We argue that understanding participant values and incorporating their perspectives into the research process may help determine whether and to what extent research practices and the resulting distributions of risks and benefits constitute exploitation (...) and contribute to building a brain research paradigm that is genuinely responsive to participant values. More broadly, we highlight the importance of paying attention to participant interests in non-therapeutic brain research. (shrink)
Leveraging firsthand experience, BRAIN-funded investigators conducting intracranial human neuroscience research propose two fundamental ethical commitments: (1) maintaining the integrity of clinical care and (2) ensuring voluntariness. Principles, practices, and uncertainties related to these commitments are offered for future investigation.
Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients.Non-speakingintellectually disabled patients may also be (...) taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication. (shrink)