This book reconceives disability as a set of social relations and practices, as experienced embodiment, and as an emancipatory movement, as well as a biomedical phenomenon. The author brings new attention to complex ethical questions surrounding disability, looking at not only the biomedical understanding of impairment, but also its cultural representations and social organization.

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both (...) distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means (...) there cannot be a sharp line between ‘academic’ or ‘objective’ bioethics, and advocacy/activism, but a continuum of bioethicists’ engagement and an associated continuum of responsibilities. (shrink)

Susan has been profoundly deaf since childhood. She is a hearing aid wearer, and likes to use the induction loops built into some public spaces, such as theaters and cinemas, to help cut down the background noise that can make hearing speech very difficult. But this depends on the building having an induction loop fitted and properly maintained. Like many other induction loop users, Susan frequently finds that the advertised loop system is either working poorly or not working at all. (...) Almost as often, she then has the experience of making a complaint about it only to have the problem denied. If she persists, she is often then met... (shrink)

abstract In this paper we question the basis on which judgements are made about the ‘quality’ of the lives of people whose embodied experience is anomalous, specifically in cases of impairments. In moral and political philosophy it is often assumed that, suitably informed, we can overcome epistemic gaps through the exercise of moral imagination: ‘putting ourselves in the place of others’, we can share their points of view. Drawing on phenomenology and theories of embodied cognition, and on empirical studies, we (...) suggest that there are barriers to imagining oneself differently situated, or imagining being another person, arising in part from the way imagination is constrained by embodied experience. We argue that the role of imagination in moral engagement with others is to expand the scope of our sympathies rather than to enable us to put ourselves in the other's place. We argue for explicit acknowledgement that our assessments of others’ QOL are likely to be shaped by the specifics of our own embodiment, and by the assumptions we make as a consequence about what is necessary for a good quality of life. (shrink)

Pandemics such as COVID-19 place everyone at risk, but certain kinds of risk are differentially severe for groups already made vulnerable by pre-existing forms of social injustice and discrimination. For people with disability, persisting and ubiquitous disablism is played out in a variety of ways in clinical and public health contexts. This paper examines the impact of disablism on pandemic triage guidance for allocation of critical care. It identifies three underlying disablist assumptions about disability and health status, quality of life, (...) and social utility, that unjustly and potentially catastrophically disadvantage people with disability in COVID-19 and other global health emergencies. (shrink)

Mitochondrial replacement techniques are intended to avoid the transmission of mitochondrial diseases from mother to child. MRT represent a potentially powerful new biomedical technology with ethical, policy, economic and social implications. Among other ethical questions raised are concerns about the possible effects on the identity of children born from MRT, their families, and the providers or donors of mitochondria. It has been suggested that MRT can influence identity directly, through altering the genetic makeup and physical characteristics of the child, or (...) indirectly through changing the child's experience of disease, and by generating novel intrafamilial relationships that shape the sense of self. In this article I consider the plausibility and ethical implications of these proposed identity effects, but I focus instead on a third way in which identity may be affected, through the mediating influence of the wider social world on MRT effects on identity. By taking a narrative approach, and examining the nature and availability of identity narratives, I conclude that while neither direct genetic nor indirect experiential effects can be excluded, social responses to MRT are more likely to have a significant and potentially damaging influence on the generation of MRT children's narratives of identity. This conclusion carries some implications for the collective moral responsibility we hold to ensure that MRT, if implemented, are practised in ethically justifiable ways. (shrink)

ABSTRACT The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient‐centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (...) (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal ‘depth of field’. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics. (shrink)

This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions; and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. Information was extracted from each (...) guideline on: 1) the development process; 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources; and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within individual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, divergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources. (shrink)

This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carried out in the United Kingdom, Switzerland, and China. All three studies used semi-structured interview protocols to allow an in-depth examination of donors’ and non-donors’ rationales for their donation decisions, with the aim of gaining information on contextual and other factors that play a role in donor decisions and identifying how these relate to factors that are more usually included in evaluations made (...) by theoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical concern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity-based desire to “give something back” to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the IVF–stem cell interface. (shrink)

Philosophically grounded, methodologically sound, and theoretically rigorous, this paradigm-challenging collection ponders the most dynamic areas of feminist inquiry into bioethical thought and practice and sketches future directions for this rapidly growing field.

The question of whether activism should be overtly embraced as part of the bioethicist's role deserves serious consideration. Like others, we agree that bioethics is inescapably partisan; bioethical deliberation is based on trying to determine morally relevant features of situations and morally justifiable outcomes. Where disagreement arises is over the degree to which bioethicists should be activists. Meyers argues for a somewhat circumscribed role, limited to action on ethically concerning institutional matters, for those who are financially independent of the institutions. (...) We take a broader view, arguing that some issues are so morally egregious that there is a duty to take a stand against them, even if the prospects of success are dim. There is a need for further debate, sharing of experiences, and analysis of case studies, to support bioethicists who take a stand. (shrink)

This chapter examines the ways in which disabled people are subject to epistemic injustice. It starts by introducing how social epistemology models the creation of shared knowledge and then uses feminist epistemology to highlight the role of social and political power in producing epistemic privilege, exclusion, and oppression. The well-known concepts of testimonial and hermeneutic epistemic injustice are discussed in relation to disability, showing how these forms of injustice are frequently experienced within the lives of disabled people. In particular, disabled (...) experience has features that distinguish it from the experiences of sexism and racism most commonly used as illustrations of epistemic injustice. The chapter ends by arguing that the potential for epistemic injustice poses unprecedented risks for disabled people in the current context, which could be minimized by recognizing that ignorance about disabled lives is not inevitable, but something that can and should be challenged. (shrink)

In this paper I consider one effect that disablism has on social interactions between nondisabled and disabled people: the “hidden labor” carried out by disabled people to manage or manipulate the presentation of their impairment to others, and their own and others’ emotional responses, in order to achieve their goals. Although such management may be understood as actively enhancing the disabled person’s autonomous agency, I argue that the cost of this labor to the disabled person and the fact that it (...) must be hidden from the nondisabled partner in order to be effective, create an ethical problem. Such interactions confer a form of autonomy through a connection that is fundamentally distorted by asymmetries of power, knowledge, risk, and is therefore ethically undesirable. (shrink)

Bioethics traditionally focuses on establishing moral limits between different types of acts. However, boundaries are established by communities and individuals who differ in the constraints shaping their moral world. Phase boundaries, the sites of transition between two physical phases such as a liquid and a gas, provide a metaphor for ‘drawing a line’ in bioethics discourse. Phase boundaries occur where the physical constraints allow both phases to coexist in stable equilibrium. This relationship can also be considered in reverse, using the (...) known position of the phase boundary to disclose the physical constraints. By analogy, instead of trying to locate the ‘correct’ moral boundary, the alternative perspective of ‘reverse ethics’ works from a commonly accepted boundary to examine the constraints of the moral world that are being used to establish it. Genetic interventions into the human body provide interesting examples of boundary establishment. In gene therapy, focusing on boundaries has resulted in a model of moral permissibility that ignores some alternative standpoints and increases the potential for conflict between them. Reverse ethics examines such conflicts in terms of the nature of the moral worlds that have come into contact with each other, taking seriously the diversity of factors governing the location of a boundary, in ways that might help shift some entrenched lines of conflict. (shrink)

This section of the journal consists of reflections on the COVID-19 pandemic by feminist bioethicists. We wanted to have a record in IJFAB of the ways in which feminist bioethicists/feminist bioethics were and are affected by the pandemic and also record how our community sees feminist approaches to bioethics as providing resources for understanding and addressing ethical themes raised by the pandemic. The contributions we received cover a wide range of personal, professional, and theoretical issues and approach them in different (...) ways. We are deeply grateful to the authors for sharing their experiences, and hope that our readers find their contributions engaging and... (shrink)

This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the (...) practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives. (shrink)

ABSTRACT The advent of genetic technologies and of genetic explanations for biomedical phenomena has major implications for disability. They raise the fundamental question of our valuation of variations in human embodiment. In this paper I suggest that the lived experience of a specific embodiment affects the structures of imagination and interpretation that people use in moral perception and evaluation. As an example, I consider recent 'deaf designer baby' cases, suggesting that it is not possible to understand the ethics of the (...) choices made without acknowledging significant differences in embodied experience. To understand embodiment fully means allowing the body itself to take us into unfamiliar territory, including experiences of limitation and difference. I argue that true justice for disabled people will demand insight into different lived experiences and an openness to what other corporeal modes have to teach us. (shrink)

The last few years have seen feminist bioethics experiencing a growing interest in the theme of disability: how bioethics as a whole can or should approach disability, and how the different perspectives brought by feminist bioethics can contribute to bioethical thinking about it. This interest was apparent in the pioneer work of disabled feminists such as Adrienne Asch, continued through the engagement of feminist theorists like Eva Feder Kittay, and appears more generally in feminist bioethics, for example in Jackie Leach (...) Scully's "Disability Bioethics," in the section on disability in Feminist Bioethics: At the Center, on the Margins (Scully, Baldwin-Ragaven, and Fitzpatrick 2010), and in IJFAB's special issue .. (shrink)

Kim Q. Hall, Feminist disability studies, Bloomington: Indiana University Press, 2011, reviewed by Jackie Leach Scully.

In this multi-disciplinary collection, we ask the question, 'What did, and do, Quakers think about good and evil?' There are no simple or straightforwardly uniform answers to this, but in this collection, we draw together contributions that for the first time look at historical and contemporary Quakerdom's approach to the ethical and theological problem of evil and good. Within Quakerism can be found Liberal, Conservative, and Evangelical forms. This book uncovers the complex development of metaethical thought by a religious group (...) that has evolved with an unusual degree of diversity. In doing so, it also points beyond the boundaries of the Religious Society of Friends to engage with the spectrum of thinking in the wider religious world. (shrink)

This issue of IJFAB is based on papers from the Eighth International Congress of Feminist Approaches to Bioethics (FAB), held in Rotterdam, the Netherlands, in June 2012. The biennial congress is now solidly established as a key feature of the bioethics landscape, and is an important factor in the continuing growth of feminist bioethics. From the first gathering in San Francisco in 1996, FAB congresses have developed a reputation as lively, welcoming, challenging, and intellectually vibrant events that make a particular (...) effort to include the work of junior and emerging scholars in the field.Both the theme of the congress, Generations: Imagining the Future to Promote Health and Justice, and that open tradition of.. (shrink)

The pandemic years have taught bioethicists a lot about the experience of working on an issue at the same time as being directly affected by it. Under normal circumstances, if we can remember what those were, we are very often thinking and writing about a situation of moral difficulty that we know, and can only know, as outsiders. We...

The last half of the twentieth century saw an explosion in our understanding of genetics and molecular biology; the questions now are in what form that genetic understanding will be put to use; and how and by whom it will be controlled. It's about science and spirituality, and how the two are connected.

The Donchin and Holmes Emerging Scholar Prize was established in 2016 on the occasion of the twentieth anniversary of the founding of the International Network on Feminist Approaches to Bioethics. The name of the prize honors the two cofounders of FAB, Anne Donchin and Helen Bequaert Holmes. Anne was Professor Emerita of Philosophy at Indiana University at the time of her death in 2014, and she had recruited Becky Holmes, a biologist and independent women’s studies scholar, to help set up (...) the first international network of feminists writing and researching in areas related to bioethics.Both Anne and Becky were strongly committed to what now tends to be called “building capacity”: a rather ugly description... (shrink)

This paper by Miles Little and colleagues identified the state they described as “liminal” within the trajectory of cancer survivorship. Since that time the concept of liminality has provided a powerful model to explore some of the difficulties experienced by people with severe and chronic illness. In this commentary I consider the expanding application of liminality not just to a widening range of medical conditions but to the consequences of therapeutic interventions as well and how this expansion has enriched and (...) challenged its use as a conceptual tool. (shrink)

In November 2004, the Swiss population voted to accept a law on research using human embryonic stem cells. In this paper, we use Switzerland as a case study of the shaping of the ostensibly ethical debate on the use of embryos in embryonic stem cell research by legal, political and social constraints. We describe how the national and international context affected the content and wording of the law. We discuss the consequences of the revised law's separation of stem cell research (...) from other forms of embryo research, its definitions of embryo and of spare embryos, and the introduction of donorship into the Swiss ethical debate on IVF. We focus on the exclusion of the potential embryo donors' voices and perspectives from the debate, and consider the effects of this exclusion on ethical discourse and the political process. (shrink)