This article positions ‘safety’ and ‘risk’ as key public health problems in mental health. I demonstrate that discourse about safety occurs extensively in relation to mental health, but it does not occur in a way where the mental health system gets any safer for the key actors involved. Ongoing unproductive discourse occurs because the different actors involved are speaking at cross purposes and about different things against the background of a ‘public’ discourse focused on safety crises. I map the general (...) interests of the main set of actors to demonstrate the conflicted and complex nature of discourse around mental health safety. In response I outline a dialogical approach to safety and risk based on the work of Habermas and values of recovery. This is presented as a framework from which to assess whether discourse is occurring effectively to develop shared meanings. Shared understandings of safety will mean that the safety needs of relevant actors can be understood and negotiated rather than giving way to an actuarial process which does not take into consideration the context of a person’s life. (shrink)

A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

Ontologies describe reality in specific domains in ways that can bridge various disciplines and languages. They allow easier access and integration of information that is collected by different groups. Ontologies are currently used in the biomedical sciences, geography, and law. A Biomedical Ethics Ontology would benefit members of ethics committees who deal with protocols and consent forms spanning numerous fields of inquiry. There already exists the Ontology for Biomedical Investigations (OBI); the proposed BMEO would interoperate with OBI, creating a powerful (...) information tool. We define a domain ontology and begin to construct a BMEO, focused on the process of evaluating human research protocols. Finally, we show how our BMEO can have practical applications for ethics committees. This paper describes ongoing research and a strategy for its broader continuation and cooperation. (shrink)

We used a retrospective survey to model the patterns of appraisal, motivation, and coping that uniquely correspond with 12 positive emotions (affection/love, amusement, awe, challenge/det...

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts (...) to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD. (shrink)

Pictures that are made, not taken, are the focus of this exciting collection of worksby 90 American artists who are using appropriation, computer technology, performance, and numerousother sources of inspiration to stretch the limits and expand the possibilities of photographicart.

There can be no disputing the proposition that doctors and nurses should be held accountable for their professional activities. In most circumstances this accountability should be achieved through appropriate and effective complaints and disciplinary procedures, but there will be cases where the criminal law should become involved. The criminal law, however, is a serious weapon, and should only be used to punish those whose conduct is truly criminal; it should not be used against those who have merely made a human (...) error. The task of the law should therefore be to identify those situations where a doctor or nurse has behaved in a way which demonstrates a criminally culpable state of mind. In NZ recently the law has failed to do this and has been used as a weapon against those who may be in no sense morally blameworthy. -/- In New Zealand recently the law has failed to do this and has been used as a weapon against those who may be in no sense morally blameworthy. In this respect, NZ has been out of step with other comparable jurisdictions and has demonstrably failed to distinguish between cases where death is caused accidentally (through the making of an ordinary human error) and cases where it is caused criminally (through recklessness or culpable negligence). This is a surprising situation in a jurisdiction which has prided itself on its willingness to adopt a reformist legal agenda. (shrink)

Untoward injuries are unacceptably common in medical treatment, at times with tragic consequences for patients. The phrases 'an epidemic of error' and 'the medical toll' have been coined to describe this problem of 'iatrogenic harm', which it has been suggested may have contributed to 98,000 deaths per year in the US. Some of these incidents are the result of negligence on the part of doctors, but more usually they are no more than inevitable concomitants of the complexity of modern healthcare. (...) This book is fundamentally about distinguishing the former from the latter. Although medicine is used as the book's primary example, the points made apply equally to aviation, industrial activities, and many other fields of human endeavour. The book advocates a more informed alternative to the blaming culture which has increasingly come to dominate our response to accidents, whether in the medical field or elsewhere. (shrink)

The rapidly increasing wealth of genomic data has driven the development of tools to assist in the task of representing and processing information about genes, their products and their functions. One of the most important of these tools is the Gene Ontology (GO), which is being developed in tandem with work on a variety of bioinformatics databases. An examination of the structure of GO, however, reveals a number of problems, which we believe can be resolved by taking account of certain (...) organizing principles drawn from philosophical ontology. We shall explore the results of applying such principles to GO with a view to improving GO’s consistency and coherence and thus its future applicability in the automated processing of biological data. (shrink)

BackgroundDeep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies hav...

The modern slavery literature engages with history in an extremely limited fashion. Our paper demonstrates to the utility of historical research to modern slavery researchers by explaining the rise and fall of the ethics-driven market category of “free-grown sugar” in nineteenth-century Britain. In the first decades of the century, the market category of “free-grown sugar” enabled consumers who were opposed to slavery to pay a premium for a more ethical product. After circa 1840, this market category disappeared, even though considerable (...) quantities of slave-grown sugar continued to arrive into the UK. We explain the disappearance of the market category. Our paper contributes to the on-going debates about slavery in management by historicizing and thus problematizing the concept of “slavery”. The paper challenges those modern slavery scholars who argue that lack of consumer knowledge about product provenance is the main barrier to the elimination of slavery from today’s international supply chains. The historical research presented in this paper suggests that consumer indifference, rather than simply ignorance, may be the more fundamental problem. The paper challenges the optimistic historical metanarrative that pervades much of the research on ethical consumption. It highlights the fragility of ethics-driven market categories, offering lessons for researchers and practitioners seeking to tackle modern slavery. (shrink)

Cognitive Science, Volume 46, Issue 3, March 2022.

In ‘Reification and Assent in Research Involving Those Who Lack Capacity’, Smajdor argues that adults with impaired capacity to grant informed consent (AWIC) are often excluded from participating in biomedical research because they cannot provide informed consent, leading to decreased chances AWIC will benefit from such research. Smajdor uses Honneth’s concept of reification to propose that securing assent (rather than consent) in cases involving AWIC offers patients moral recognition that is not tied to their capacities. Assent provides this recognition by (...) including the patient in a shared moral sphere, highlighting her agency and worth without reducing her to her incapacity or a thing-to-be-managed. Assent also avoids grounding in, or a reliance on, the future development of autonomy (pp.5–6).1 Our recent research on patient and caregiver perspectives of potential paediatric deep brain stimulation (pDBS) for refractory obsessive–compulsive disorder (OCD) and dystonia demonstrates that paediatric neurosurgery patients desire the kind of recognition Smajdor associates with assent, and their caregivers largely agree.2 3 Since (generally) paediatric patients in the USA are unable to grant informed consent, their caregivers must provide it instead. This raises the question of how to properly integrate paediatric patients into the DBS decision-making process. One dimension along which this is evident is that …. (shrink)

Critical discourse analysis is a useful and productive qualitative methodology but has been underutilized within nursing research. In order to redress this deficiency the research presented in this article represents an exploration of the way in which critical discourse analysis may be applied to the analysis of public debates around policy for nursing practice. In this article the author discusses the history of the application of critical discourse analysis and provides an example of its application to the debate around the (...) use of nurse practitioners within the Australian healthcare system. (shrink)

We used a paper-based survey to explore dynamics of Local Food Networks for fish in the Icelandic Westfjords. Preference for local fish remains high, and fish consumption is largely embedded within a gift network, rather than typical commercial channels off ering costly, frozen, and non-local products. Individuals lacking personal connections to the fishing industry obtain fish from these commercial networks. LFNs for fish in rural Icelandic communities are therefore expressions of power dimensions that are symptomatic of the larger inequalities built (...) into the fisheries management system, designed for globalized food networks. The disconnect between large-scale production mechanisms and local consumption patterns highlights the lack of responsiveness of the fishing industry to local Icelandic consumers and demonstrates the impacts national political structures can have on LFNs. (shrink)

While the Internet has emerged as a significant resource for women negotiating the questions and circumstances that arise during conception, pregnancy and childbirth, it remains unclear what role the Internet plays in challenging the current biomedical paradigm and empowering women to make meaningful choices. This article explores how women use the Internet to manage their pregnancies and mediate their doctor–patient relationships, particularly examining the role of social class and personal health history in shaping such Internet use. Drawing from in-depth interviews (...) with white middle-class mothers, the findings show that rather than using technology to resist the dominant biomedical paradigm, most women turned to online resources that affirmed mainstream medical authority and continued to rely on their doctors. By providing the means to confirm normalcy and take control in their reproductive experiences, the Internet enables socially privileged women to more fully perform the informed patient role in order to demonstrate their competence as mothers. (shrink)

In “Revive and Refuse: Capacity, Autonomy, and Refusal of Care After Opioid Overdose”, Marshall, Derse, Weiner, and Joseph contend that patients who may appear to satisfy the standard criteria for...

“Doomsday prepping” is a phenomenon which involves preparing for feared societal collapse by stockpiling resources and readying for self-sufficiency. While doomsday prepping has traditionally been reported in the context of extremists, during the COVID-19 pandemic, excessive stockpiling leading to supply shortages has been reported globally. It is unclear what psychological or demographic factors are associated with this stockpiling. This study investigated doomsday prepping beliefs and behaviors in relation to COVID-19 proximity, demographics, coping strategies, psychopathology, intolerance of uncertainty (IU), and personality (...) in 384 participants (249 female) in an online study. Participants completed a number of questionnaires including the Post-Apocalyptic and Doomsday Prepping Beliefs Scale and a scale designed for the current study to measure prepping in the context of COVID-19. These were analyzed using ANOVAs, correlational, and mediation analyses to examine relationships between psychometric variables and stockpiling. Prepping beliefs and behaviors were higher in males than females and positively associated with anxiety, obsessive-compulsive symptoms, IU, and traditional masculinity traits. Older age, male gender, obsessive-compulsive symptoms, and traditional masculinity predicted unique variance in prepping. The relationship between gender and stockpiling was mediated by social learning (witnessing other people panic buying) and the perceived threat of COVID-19 (doomsday interpretations) while proximity and personal vulnerability to COVID-19 were non-significant. Results indicate that panic buying was influenced more by witnessing others stockpiling, personality, and catastrophic thinking rather than by proximity to danger. Education could target these factors in ongoing waves of the pandemic or future catastrophes. (shrink)

Controlled donation after circulatory determination of death (cDCDD) is an important strategy for increasing the pool of eligible organ donors.

This article is a commentary on O’Donohue’s2019 37-point critique of the American Psychological Association Ethical Principles of Psychologists and Code of Conduct ([Ethics Code] 2017). In this brief paper, we respond to the article by addressing our most important disagreements with O’Donohue’s arguments as well as areas of agreement. While we disagree with many of O’Donohue’s points, we also view his critique as being important and timely given that the 2018 APA Ethics Task Force is currently exploring potential revisions to (...) the Code. (shrink)

The use of list-learning paradigms to explore false memory has revealed several critical findings about the contributions of similarity and relatedness in memory phenomena more broadly. Characterizing the nature of “similarity and relatedness” can inform researchers about factors contributing to memory distortions and about the underlying associative and semantic networks that support veridical memory. Similarity can be defined in terms of semantic properties, lexical/associative properties, or structural properties. By manipulating the type of list and its relationship to a non-studied critical (...) item, we review the effects of these types of similarity on veridical and false memory. All forms of similarity reviewed here result in reliable error rates and the effects on veridical memory are variable. The results across a variety of paradigms and tests provide partial support for a number of theoretical explanations of false memory phenomena, but none of the theories readily account for all results. (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)

Throughout the biological and biomedical sciences there is a growing need for, prescriptive ‘minimum information’ (MI) checklists specifying the key information to include when reporting experimental results are beginning to find favor with experimentalists, analysts, publishers and funders alike. Such checklists aim to ensure that methods, data, analyses and results are described to a level sufficient to support the unambiguous interpretation, sophisticated search, reanalysis and experimental corroboration and reuse of data sets, facilitating the extraction of maximum value from data sets (...) them. However, such ‘minimum information’ MI checklists are usually developed independently by groups working within representatives of particular biologically- or technologically-delineated domains. Consequently, an overview of the full range of checklists can be difficult to establish without intensive searching, and even tracking thetheir individual evolution of single checklists may be a non-trivial exercise. Checklists are also inevitably partially redundant when measured one against another, and where they overlap is far from straightforward. Furthermore, conflicts in scope and arbitrary decisions on wording and sub-structuring make integration difficult. This presents inhibit their use in combination. Overall, these issues present significant difficulties for the users of checklists, especially those in areas such as systems biology, who routinely combine information from multiple biological domains and technology platforms. To address all of the above, we present MIBBI (Minimum Information for Biological and Biomedical Investigations); a web-based communal resource for such checklists, designed to act as a ‘one-stop shop’ for those exploring the range of extant checklist projects, and to foster collaborative, integrative development and ultimately promote gradual integration of checklists. (shrink)

Rapid advancements in artificial intelligence and machine learning (AI/ML) in healthcare raise pressing questions about how much users should trust AI/ML systems, particularly for high stakes clinical decision-making. Ensuring that user trust is properly calibrated to a tool’s computational capacities and limitations has both practical and ethical implications, given that overtrust or undertrust can influence over-reliance or under-reliance on algorithmic tools, with significant implications for patient safety and health outcomes. It is, thus, important to better understand how variability in trust (...) criteria across stakeholders, settings, tools and use cases may influence approaches to using AI/ML tools in real settings. As part of a 5-year, multi-institutional Agency for Health Care Research and Quality-funded study, we identify trust criteria for a survival prediction algorithm intended to support clinical decision-making for left ventricular assist device therapy, using semistructured interviews (n=40) with patients and physicians, analysed via thematic analysis. Findings suggest that physicians and patients share similar empirical considerations for trust, which were primarilyepistemicin nature, focused on accuracy and validity of AI/ML estimates. Trust evaluations considered the nature, integrity and relevance of training data rather than the computational nature of algorithms themselves, suggesting a need to distinguish ‘source’ from ‘functional’ explainability. To a lesser extent, trust criteria were also relational (endorsement from others) and sometimes based on personal beliefs and experience. We discuss implications for promoting appropriate and responsible trust calibration for clinical decision-making use AI/ML. (shrink)