In this paper we argue that ill persons are particularly vulnerable to epistemic injustice in the sense articulated by Fricker. Ill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies. Ill persons are also vulnerable to hermeneutical injustice because many aspects of the experience of illness are difficult to understand and communicate and this often owes to gaps in collective hermeneutical resources. We then argue (...) that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the practitioners and institutions of contemporary healthcare services—the former owing to their training, expertise, and third-person psychology, and the latter owing to their implicit privileging of certain styles of articulating and evidencing testimonies in ways that marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort to ameliorate epistemic injustice. (shrink)

The nature and role of the patient in biomedicine comprise issues central to bioethical inquiry. Given its developmental history grounded firmly in a backlash against 20th-century cases of egregious human subjects abuse, contemporary medical bioethics has come to rely on a fundamental assumption: the unit of care is the autonomous self-directing patient. In this article we examine first the structure of the feminist social critique of autonomy. Then we show that a parallel argument can be made against relational autonomy as (...) well, demonstrating how this second concept of autonomy fails to take sufficiently into account an array of biological determinants, particularly those from microbial biology. Finally, in light of this biological critique, we question whether or to what extent any relevant and meaningful view of autonomy can be recovered in the contemporary landscape of bioethics. (shrink)

Trans studies constitute part of the coming-to-voice of transpeople, long the theorized and researched objects of sexology, psychiatry, and feminist theory. Sandy Stone’s pioneering, “The Empire Strikes Back: A Posttranssexual Manifesto” sought the end of monolithic medical and feminist accounts of transsexuality to reveal a multiplicity of trans-authored narratives. My goal is a better understanding of what it is for transpeople to come to this polyvocality. I argue that trans politics ought to proceed with the principle that transpeople have first-person (...) authority (FPA) over their own gender, and I clarify what this means. (shrink)

The “demand” for selective termination of pregnancy is a socially constructed response to prior medical interventions in women's reproductive processes, themselves dependent on cultural views of infertility.

Modern medicine is increasingly aware of the significance of patient autonomy in making treatment choices. This would seem to be particularly important where the therapy requested was "voluntary" as in fertility treatment or cosmetic surgery. However, the Hippocratic doctrine "Primum non nocere", seems especially relevant where the treatment sought may have a low chance of a successful outcome or even be life-threatening. Mrs A's case demonstrates the difficulty faced by the physician who wants to maximise her patient's autonomy, but "Above (...) all, do no harm". (shrink)

Over the last several years, as cesarean deliveries have grown increasingly common, there has been a great deal of public and professional interest in the phenomenon of women 'choosing' to deliver by cesarean section in the absence of any specific medical indication. The issue has sparked intense conversation, as it raises questions about the nature of autonomy in birth. Whereas mainstream bioethical discourse is used to associating autonomy with having a large array of choices, this conception of autonomy does not (...) seem adequate to capture concerns and intuitions that have a strong grip outside this discourse. An empirical and conceptual exploration of how delivery decisions ought to be negotiated must be guided by a rich understanding of women's agency and its placement within a complicated set of cultural meanings and pressures surrounding birth. It is too early to be 'for' or 'against' women's access to cesarean delivery in the absence of traditional medical indications – and indeed, a simple pro- or con- position is never going to do justice to the subtlety of the issue. The right question is not whether women ought to be allowed to choose their delivery approach but, rather, taking the value of women's autonomy in decision-making around birth as a given, what sorts of guidelines, practices, and social conditions will best promote and protect women's full inclusion in a safe and positive birth process. (shrink)

Contemporary bioethics recognizes the importance of the culture in shaping ethical issues, yet in practice, a process for ethical analysis and decision making is rarely adjusted to the culture and ethnicity of involved parties. This is of a particular concern in a health care system that is caring for a growing Aboriginal population. We raise the possibility of constructing a bioethics grounded in traditional Aboriginal knowledge. As an example of an element of traditional knowledge that contains strong ethical guidance, we (...) present the story of the Gifts of the Seven Grandfathers. We note a resemblance of this Ojibway teaching to virtue ethics in European traditions, but we suggest that there are also important differences in how these two traditions are currently presented. We hope that further engagement with a variety of indigenous moral teachings and traditions could improve health care involving Aboriginal patients and communities, and enrich the discipline of bioethics. (shrink)

Neurodiversity has remained a controversial concept over the last decade. In its broadest sense the concept of neurodiversity regards atypical neurological development as a normal human difference. The neurodiversity claim contains at least two different aspects. The first aspect is that autism, among other neurological conditions, is first and foremost a natural variation. The other aspect is about conferring rights and in particular value to the neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a natural variation on (...) par with for example homosexuality. The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable. We will discuss the effects of DSM categorization and the medical model for high functioning autists. After a discussion of autism as a culture we will analyze various possible strategies for the neurodiversity movement to claim extra resources for autists as members of an underprivileged culture without being labelled disabled or as having a disorder. We will discuss their vulnerable status as a group and what obligation that confers on the majority of neurotypicals. (shrink)

Increased attention paid to inter-group genetic variability following completion of the Human Genome Project has provoked debate about race as a category of classification in biomedicine and as a biological phenomenon at the level of the genome. Philosophers of science favor a metaphysical approach relying on natural kind theorizing, the underlying assumptions of which structure the questions asked. Limitations arise the more metaphysically invested and less attuned to scientific practice these questions are. Other questions—arguably, those that matter most socially and (...) politically—remain unasked, not merely overlooked but systematically ignored and even foreclosed. Race fails as a postulated natural kind because it fails to meet expectations that as a category of classification it furnish an authoritative taxonomy that by depicting fundamental divisions in nature is conducive to fulfilling far-ranging explanatory aims. Racial, ethnic, and other group designations may nonetheless be projectible insofar as they support inductive inferences in biomedicine, but this does not render them any less social. Indeed, the statistical, contingent, accidental, localized, and interest-relative bases of such inferences serve to undercut the dichotomizing of race as either biological reality or social construct and favor the adoption of a pragmatic approach. (shrink)

Principle-based formulations of bioethical theory have recently come under increasing scrutiny, particularly insofar as they give prominence to personal autonomy. This essay critiques the dominant conceptualization of autonomy and urges an alternative formulation freed from the individualistic assumptions that pervade the prevailing framework. Drawing on feminist perspectives, I discuss the need for a vision of patient autonomy that joins relational experiences to individuality and acknowledges the influence of patterns of power and authority on the exercise of patient agency. Deficiencies in (...) the current models of science and social relations guiding medical practice are analyzed, particularly (1) the tendency to disregard the patients self-knowledge and (2) failure to recognize limitations on the generalizability of medical knowledge. Models of social relations such as mothering and friendship are explored to advance a conception of autonomy better suited to the practical activities of medicine. In conclusion, I consider how acknowledgement of the specificity and complexity of social relations can contribute to reconfiguration of other principles comprising the standard framework of bioethics, particularly beneficence, justice, and equality. (shrink)

Transgender people and issues have come to the forefront of public consciousness over the last year. Caitlyn Jenner' very public transition, heightened media coverage of the murders of transgender women of color, and the panicked passage of North Carolina's “bathroom bill”, mean that conversations about transgender health and well-being are no longer happening only within small communities. The idea that transgender issues are bioethical issues is not new, but I think that increased public awareness of transgender people and the ways (...) that their health is affected by systems that bioethics already engages with offers an opportunity for scholarship that works to improve transgender health in meaningful ways. (shrink)

Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations – concerns we call “non-welfare interests”. The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood. In order to better undersand the influence of non-welfare interests, (...) we surveyed a national sample of the US population using a probability-based internet panel. Logistic regression models assessed the demographic and attitudinal characteristics associated with participants’ willingness to give consent for unspecified future uses of their donation when presented with 7 research scenarios that raised possible non-welfare interest concerns. Most people had non-welfare interests that significantly affect their willingness to donate to a biobank using blanket consent. Some non-welfare interests are associated with subgroups but others are not. A positive attitude toward biomedical research in general was associated with increased willingness to donate, while concerns about privacy and being African American were associated with decreased willingness. Non-welfare interests matter and can diminish willingness to donate to a biobank. Our data suggest that trust in research promotes willingness to donate. Ignoring non-welfare interests could erode this trust. Donors’ non-welfare interests could be accommodated through greater transparency and easier access to information about the uses of donations. (shrink)

Who is the autonomous moral agent? The individual? The exemplary/typical knowing, acting, suffering, or thriving human being? Such questions in diverse modalities, originating in multiple circumsta...