While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then motivate (...) the idea that experience can be an asset by appealing to themes in feminist and moral epistemology, distinguishing between epistemic and justice-based appeals. Next, we explain the concern that experience may be a liability by appealing to empirical work on cognitive biases and theoretical work about the problem of partial representation. We conclude with preliminary recommendations for addressing the paradox and offer several questions for future discussion. (shrink)

Work done within the realm of what is sometimes called ‘descriptive ethics’ brings two questions readily to mind: How can empirical findings, in general, inform normative debates? and How can these empirical findings, in particular, inform the normative debate at hand? Brick et al 1 confront these questions in their novel investigation of public views about lives worth living and the permissibility of withdrawing life-sustaining treatment from critically ill infants. Mindful of the is-ought gap, the authors suggest modestly that their (...) data ‘may be useful when constructing guidelines for clinical practice’. In this commentary, I consider some potential limitations on the generalisability of these data in the context of policy and clinical practice, limitations which may in turn serve as directions for future empirical research. The authors’ study presented participants six case scenarios, five of which involved the possibility of withdrawing life-sustaining treatment from critically ill infants. The results revealed that “[a]lmost all respondents agreed that at some level of quality of life, life may be of no benefit or worse than death for an infant” and that “participants significantly favoured withdrawal of treatment for the most severe cases.” One salient detail in these scenarios …. (shrink)

Volume 20, Issue 2, February 2020, Page 66-68.

Hastings Center Report, Volume 52, Issue 1, Page 42-50, January/February 2022.

The neurodiversity view makes both a conceptual and a political claim. Conceptually, the neurodiversity view holds that certain neurocognitive differences currently classified as disorders—autism, most notably—are best understood as forms of diversity. Politically, it holds that, rather than being medicalized and ‘treated’, neurodiversity ought to be respected in the way other human differences—such as differences in race and sexual orientation—are respected. In this article, I challenge the arguments given in support of neurodiversity’s conceptual claim, while defending its political aims of (...) respect, inclusion, and accommodation. Although neurodiversity provides a compelling challenge to the status quo, I conclude that its most prominent arguments fall short of establishing that autism is not a disorder. As I go on to argue, however, the fact that autism is a disorder does not entail that medicalization is the only course. My view is ultimately that social change and medical intervention need not be considered mutually exclusive. (shrink)

Volume 20, Issue 4, May 2020, Page 48-50.

Volume 20, Issue 7, July 2020, Page 190-192.

If the COVID-19 crisis has brought any benefits, one is the increased attention paid to persons with disabilities in the contexts of clinical medicine and public health. There has been a great deal of insightful discussion since the outbreak about controversial disability issues the pandemic has brought to light. For a population often overlooked in both academic circles and the public square, mere visibility is a victory. There are at least two important respects in which the discussion remains underdeveloped, however.First, (...) much of the work being done has focused on disability considerations in policies governing triage and the rationing of critical care resources under crisis conditions. This is undoubtedly an... (shrink)

The Ontology for Biomedical Investigations (OBI) is an ontology that provides terms with precisely defined meanings to describe all aspects of how investigations in the biological and medical domains are conducted. OBI re-uses ontologies that provide a representation of biomedical knowledge from the Open Biological and Biomedical Ontologies (OBO) project and adds the ability to describe how this knowledge was derived. We here describe the state of OBI and several applications that are using it, such as adding semantic expressivity to (...) existing databases, building data entry forms, and enabling interoperability between knowledge resources. OBI covers all phases of the investigation process, such as planning, execution and reporting. It represents information and material entities that participate in these processes, as well as roles and functions. Prior to OBI, it was not possible to use a single internally consistent resource that could be applied to multiple types of experiments for these applications. OBI has made this possible by creating terms for entities involved in biological and medical investigations and by importing parts of other biomedical ontologies such as GO, Chemical Entities of Biological Interest (ChEBI) and Phenotype Attribute and Trait Ontology (PATO) without altering their meaning. OBI is being used in a wide range of projects covering genomics, multi-omics, immunology, and catalogs of services. OBI has also spawned other ontologies (Information Artifact Ontology) and methods for importing parts of ontologies (Minimum information to reference an external ontology term (MIREOT)). The OBI project is an open cross-disciplinary collaborative effort, encompassing multiple research communities from around the globe. To date, OBI has created 2366 classes and 40 relations along with textual and formal definitions. The OBI Consortium maintains a web resource providing details on the people, policies, and issues being addressed in association with OBI. (shrink)

Patients who experience difficulty making medical decisions are often referred to as “ambivalent.” However, the current lack of attention to the nuances between a cluster of phenomena that resemble...

St. Augustine.--Boethius.--Abelard.--St. Thomas of Aquin.--The origins in Greece.--The neo-scholastic revival.

How should clinical ethicists be trained? Scholars have stated that clinical ethics fellowships create well-trained, competent ethicists. While this appears intuitive, few features of fellowship programs have been publicly discussed, let alone debated. In this paper, we examine how fellowships can foster effective mentoring relationships. These relationships provide the foundation for the fellow’s transition from novice to competent professional. In this essay, we begin by discussing our pedagogical commitments. Next, we describe the structures our program has created to assist our (...) fellows in becoming competent ethicists. We then outline the kinds of knowledge, skills, and professional attributes mentors should possess. Following this, we focus on the knowledge, skills, and professional attributes that fellows develop as they co-create effective mentoring relationships. We will not prescribe a single approach to fellowship training; instead, our perspective will, we hope, become a catalyst for further conversation on training and mentoring clinical ethics fellows. (shrink)

While it is not explicitly included in capacity assessment tools, “consistency” has come to feature as a central concern when assessing patients’ capacity. In order to determine whether inconsistency indicates incapacity, clinicians must determine the source of the inconsistency with respect to the process or content of a patient’s decision-making. In this paper, we outline common types of inconsistency and analyze them against widely accepted elements of capacity. We explore the question of whether inconsistency necessarily entails a deficiency in a (...) patient’s capacity. While inconsistency may count as _prima_ _facie_ evidence of incapacity—enough evidence to justify a closer look—when making such determinations, it is important for clinicians to slow down, inquire about the reasons underlying the inconsistency and clearly show which of the elements of capacity the patient fails to satisfy. (shrink)

This book addresses the problem of how to make democratically-legitimate public policy on issues of contentious bioethical debate. It focuses on ethical contests about research and their legitimate resolution, while addressing questions of political legitimacy. How should states make public policy on issues where there is ethical disagreement, not only about appropriate outcomes, but even what values are at stake? What constitutes justified, democratic policy in such conflicted domains? Case studies from Canada and Australia demonstrate that two countries sharing historical (...) and institutional characteristics can reach different policy responses. This book is of interest to policymakers, bioethicists, and philosophers, and will deepen our understanding of the interactions between large-scale socio-political forces and detailed policy problems in bioethics. (shrink)