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.

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)

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)

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...

Vaccine research, as well as the development, testing, clinical trials, and commercial uses of vaccines involve complex processes with various biological data that include gene and protein expression, analysis of molecular and cellular interactions, study of tissue and whole body responses, and extensive epidemiological modeling. Although many data resources are available to meet different aspects of vaccine needs, it remains a challenge how we are to standardize vaccine annotation, integrate data about varied vaccine types and resources, and support advanced vaccine (...) data analysis and inference. To address these problems, the community-based Vaccine Ontology (VO) has been developed through collaboration with vaccine researchers and many national and international centers and programs, including the National Center for Biomedical Ontology (NCBO), the Infectious Disease Ontology (IDO) Initiative, and the Ontology for Biomedical Investigations (OBI). VO utilizes the Basic Formal Ontology (BFO) as the top ontology and the Relation Ontology (RO) for definition of term relationships. VO is represented in the Web Ontology Language (OWL) and edited using the Protégé-OWL. Currently VO contains more than 2000 terms and relationships. VO emphasizes on classification of vaccines and vaccine components, vaccine quality and phenotypes, and host immune response to vaccines. These reflect different aspects of vaccine composition and biology and can thus be used to model individual vaccines. More than 200 licensed vaccines and many vaccine candidates in research or clinical trials have been modeled in VO. VO is being used for vaccine literature mining through collaboration with the National Center for Integrative Biomedical Informatics (NCIBI). Multiple VO applications will be presented. (shrink)

Aristotelian commenters have long noted an apparent contradiction between what Aristotle says in Posterior Analytics I.2 and Physics I.1 about how we obtain first principles of a science. At Posterior 71b35–72a6, Aristotle states that what is most universal (καθόλου) is better-known by nature and initially less-known to us, while the particular (καθ’ ἕκαστον) is initially better-known to us, but less-known by nature. At Physics 184a21-30, however, Aristotle states that we move from what is better-known to us, which is universal (καθόλου), (...) to what is better-known absolutely, which is particular (καθ’ ἕκαστον). This paper turns to two of Aristotle’s most notable medieval commentators—Albertus Magnus and Thomas Aquinas—to resolve this apparent contradiction. The key to Thomas and Albert’s solutions, we will argue, is a twofold distinction between a sense-perceptive and scientific universal, and the particulars as sensed individuals and as differentiating attributes. Our Synthetic treatment of these distinctions contributes to the ongoing scholarly effort to understand the Stagyrite’s complex theory of knowledge. (shrink)

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)

This article examines a series of Schelling-like models of residential segregation, in which agents prefer to be in the minority. We demonstrate that as long as agents care about the characteristics of their wider community, they tend to end up in a segregated state. We then investigate the process that causes this and conclude that the result hinges on the similarity of informational states among agents of the same type. This is quite different from Schelling-like behavior and suggests that segregation (...) is an instance of macrobehavior that can arise from a wide variety of micromotives. (shrink)

Lateral temporal measures of the auditory evoked potential including the T-complex, as well as an earlier negative peak index maturation of auditory/speech processing. Previous studies have shown that these measures distinguish neural processing in children with typical language development from those with disorders and monolingual from bilingual children. In this study, bilingual children with Turkish as L1 and German as L2 were compared with monolingual German-speaking children with developmental language disorder and monolingual German-speaking children with TD in order to disentangle (...) effects of limited language input vs. reduced perceptual abilities in the processing of speech and non-speech stimuli. Sensory processing reflected by the T-complex was compared in response to a German vowel and a sine-wave tone in the three groups of children, ages 5 through 6 years. Stimuli were presented while children watched a muted video. Auditory evoked potentials were time-locked to the vowels and tones. AEPs to the frequent stimuli within an oddball paradigm were analyzed at the left and right temporal electrode sites.The results revealed language status, stimulus, and language test measures all influenced the T-complex amplitudes. Particularly, the peak amplitude of Ta was modulated by language status and stimulus type. Bilingual children had significantly more negative Ta responses than the monolingual children with TD for both vowels and tones while DLD children differed from TD children only for the vowel stimulus. The amplitude of the T-complex was overall more negative at the left than at the right site. The Na peak latency was longer for the bilingual group than that observed for the two monolingual groups. The Tb latency was shorter for DLD and bilingual groups than that for TD children in the vowel condition, but no such latency difference between DLD and bilingual children was found. We suggest that the attenuated T-complex for bilingual children indicates continued plasticity of the auditory cortex to allow for learning of novel, second-language speech sounds. (shrink)

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

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)

Scholars are increasingly calling for the environmental issues of the industrial agricultural system to be addressed via eventual agroecological system-level transformation. It is critical to identify the barriers to this transition. Drawing from Henke’s theory of “repair,” we explore how farmers participate in the reproduction of the industrial system through “discursive repair,” or arguing for the continuation of the industrial agriculture system. Our empirical case relates to water pollution from nitrogen fertilizer and draws data from a sample of over 150 (...) interviews with row-crop farmers in the midwestern United States. We find that farmers defend this system by denying agriculture’s causal role and proposing the potential for within-system solutions. They perform these defenses by drawing on ideological positions and may be ultimately led to seek system maintenance because they are unable to envision an alternative to the industrial agriculture system. (shrink)