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)

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

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

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)

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)

Abstract“Suffering” is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which “suffering” is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering are (...) often getting at something ethically important. But this is where the work of ethics begins, not where it ends. (shrink)

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

One way of thinking about the tension this case presents is as a simple conflict between law and ethics: Does the team follow the patient’s legally authorized surrogate, or the surrogate who is bet...

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)

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...

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)

Volume 19, Issue 11, November 2019, Page 82-84.

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)

Extracorporeal membrane oxygenation (ECMO) is typically viewed as a time-limited intervention—a bridge to recovery or transplant—not a destination therapy. However, some patients with decision-making capacity request continued ECMO support despite a poor prognosis for recovery and lack of viability as a transplant candidate. In response, critical care teams have asked for guidance regarding the ethical permissibility of unilateral withdrawal over the objections of a capacitated patient. In this article, we evaluate several ethical arguments that have been made in favor of (...) withdrawal, including distributive justice, quality of life, patients’ rights, professional integrity, and the Equivalence Thesis. We find that existing justifications for unilateral withdrawal of ECMO support in capacitated patients are problematic, which leads us to conclude that either: (1) additional ethical arguments are necessary to defend this approach or (2) the claim that it is not appropriate to use ECMO as a destination therapy should be questioned. (shrink)

Ms. P. is in the ICU with respiratory failure and sepsis. She has been on a ventilator for almost a week, and now has impending kidney failure. Her children, who have been taking turns at the bedsi...

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)

Moral and legal responsibility is diminished in neuropsychiatric patients who lack the capacity to use reasoning to determine morally appropriate behavior. Patients with behavioral-variant frontotemporal dementia (bvFTD), however, develop immoral behaviors as a result of their disease despite the ability to explicitly state that their behavior is wrong. In order to determine whether bvFTD patients should be held responsible for their immoral behavior, we begin by discussing the philosophical concepts of free will, determinism, and responsibility. Those who believe in both (...) determinism and free will are called compatibilists. We argue that reason-responsiveness, a specific type of compatibilism, cannot fully determine responsibility in bvFTD patients if reason-responsiveness is considered to be a single, unified concept. Instead, we argue that several different neuropsychological capacities, including many that are impaired in bvFTD patients, contribute to a patient's ability to respond to certain reasons in specific situations. Finally, we propose a new framework for understanding reason-responsiveness, using case examples to illustrate how this model can be used to determine responsibility in neuropsychiatric patients. (shrink)

All insects appear to have a transport lipoprotein in the hemolymph (blood) that is responsible for moving hydrophobic materials through aqueous compartments. This has been called lipophorin because it is believed to be a reversible transport shuttle. Since most insects undergo some degree of metamorphosis from larval stages to the adult, the need to transport hydrophobic materials or the nature of these materials may change in the course of the life span. This is especially marked in the case of the (...) holometabolous insects – those which undergo drastic change of form, e.g. caterpillar‐pupa‐adult moth. We have found that lipophorin undergoes a molecular metamorphosis paralleling that of the insect. (shrink)