In this paper, I argue that, even when disability rights activists are most clearly acting as activists, they can advance the scholarly activity of disability bioethics. In particular, I will argue that even engaging in non-violent direct action, including civil disobedience, is an important way in which disability rights activists directly support the efforts of disability bioethics scholars. I will begin by drawing upon Hilde Lindemann’s work on relational narrative identity to describe how certain damaging master narratives about disability hinder (...) the uptake of arguments from disability bioethics. Then, I will argue that disability activism, especially non-violent direct action and civil disobedience, provides an effective counterstory to some of the worst of these master narratives, thereby laying the groundwork for the scholarly argument s of disability bioethicists to be given more serious consideration. Ultimately, I conclude that the field of bioethics is improved when it abandons the gross grained, generalizations about who disabled people are and how they act put forth by oppressive master narratives in favor of the more nuanced self-descriptions offered by the counterstories being offered by disabled people themselves. So it is that, by challenging these oppressive master narratives that constrain and distort the social meaning of disability, disability activism can improve mainstream bioethics. (shrink)

Empirical bioethics research has become an established field of study, with its own unique goals, vocabulary, and methods, and wi...

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 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)

Central to this essay is the understanding that varied communities may have an inherent and unrecognised culture of their own and this culture may be detrimental to their core. Bioethics constitutes one such community and is embedded in norms and values comprising its own culture. I use exclusion of religion or simply ‘irreligion’ as an example of a cultural element that may be established and so shape the culture of bioethics. Irreligious bioethics includes both overt religious preclusion and the more (...) pervasive form of religious marginalisation. This norm is narrated into the culture of bioethics with justifications sustaining it. Irreligious bioethics is inadmissible as it claims illegitimate neutrality, is a misuse of expertise and results in a variety of harms. As bioethics is influential in society, those engaged should be critically reflective and aware of harmful cultural elements whilst also possessing the honesty, courage and capacity to change them. (shrink)

The idea of a role in nursing that includes expertise in ethics has been around for more than 30 years. Whether or not one subscribes to the idea that nursing ethics is separate and distinct from bioethics, nursing practice has much to contribute to the ethical practice of healthcare, and with the strong grounding in ethics and aspiration for social justice considerations in nursing, there is no wonder that the specific role of the nurse ethicist has emerged. Nurse ethicists, expert (...) in nursing practice and the application of ethical theories and concepts, are well positioned to guide nurses through complex ethical challenges. However, there is limited discussion within the field regarding the specific job responsibilities that the nurse ethicist ought to have. The recent appearance of job postings with the title “nurse ethicist” suggest that some healthcare institutions have identified the value of a nurse in the practice of ethics and are actively recruiting. Discomfort about the possibility of others defining the role of the nurse ethicist inspired this paper (and special issue). If the nurse ethicist is to be seen as an integral part of addressing ethical dilemmas and ethical conflicts that arise in healthcare, then nurse ethicists ought to be at the forefront of defining this role. In this paper, we draw upon our own experiences as nurse ethicists in large academic healthcare systems to describe the essential elements that ought to be addressed in a job description for a nurse ethicist practicing in a clinical setting linked to academic programs. Drawing upon our experience and the literature, we describe how we perceive the nurse ethicist adds value to healthcare organizations and teams of professional ethicists. (shrink)

In his 1987 paper “Truth or Consequences,” Dan Brock describes a deep conflict between the goals and virtues of philosophical scholarship and public policymaking: whereas the former is concerned with the search for truth, the latter must primarily be concerned with promoting good consequences. When philosophers are engaged in policymaking, he argues, they must shift their primary goal from truth to consequences—but this has both moral and methodological costs. Brock’s argument exemplifies a pessimistic, but not uncommon, view of the possible (...) shape and nature of applied philosophy. The present paper paints a richer and more optimistic picture. It argues that the difference between theoretical philosophy and applied philosophy is not best understood as a choice between truth and consequences. On the contrary, applied philosophers engage in forms of truth‐seeking that are properly concerned with consequences—including the consequences of philosophical practice itself. (shrink)

Events in 2020 have sparked a reimagination of how both individuals and institutions should consider race, power, health, and marginalization in society. In a response to these developments, we exa...

Although clinical ethics scholarship and practice has largely avoided assuming an activist stance, the many health care crises of the last eighteen months motivated a distinct change: On listserves, in blog postings, and in published essays, activist language has permeated conversations over such issues as the impact of triage policies on persons with disabilities and of color, and how the health care system has historically failed African Americans. In this paper, I defend this turn, arguing that clinical ethicists should embrace (...) activism—generally, and with particular emphasis on institutional, mesolevel concerns. Ethicists are often uniquely situated to understand the structural factors that regularly motivate clinical ethics cases, and they are often in a privileged position to be effective change agents. In making this case, I also stress the need not to overstep one's skills and to be acutely cognizant of the political risks associated with such work. (shrink)

In their target article, Zamina Mithani, Jane Cooper, and J. Wesley Boyd make a compelling case for the importance of “counter storytelling” in bioethics. They obse...

The authority of bioethics as a field of inquiry and of bioethicists as scholars with a distinctive expertise is being questioned on various fronts. Sarah Franklin’s 2019 Nature commentary ‘Ethical research – the long and bumpy road from shirked to shared’ is the latest example. In this paper, we respond to these challenges by focusing on two key issues. First, we discuss the theory and practice of bioethics. We argue that both of these endeavours are fundamental components of this field (...) of inquiry and that bioethics cannot be reduced to the contribution that it makes to the production of biopolicy, as Franklin suggests. Second, we contend that bioethicists have distinctive skills and knowledge that place them at an epistemic advantage in discussing normative questions. Hence, we reject views that deny the specific contribution that bioethicists can bring to assessing the ethics and governance of science and technology. We conclude by arguing that—despite formal and substantive differences between disciplines—philosophers, social scientists and other scholars should join forces and engage in critical friendships rather than turf wars to move towards the just governance of science and technology. (shrink)