While the intellectual challenge of digital phenotyping (DP) has evolved from data collection to more complex data analysis (Onnela 2021), core ethical considerations remain centered on patient pri...

In their article “Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?” Bayefsky and Berkman briefly mention that: “[s]ome are...

When applied in the health sector, AI-based applications raise not only ethical but legal and safety concerns, where algorithms trained on data from majority populations can generate less accurate or reliable results for minorities and other disadvantaged groups.

ChatGPT has taken the academic community by storm (Cotton, Cotton, and Shipway 2023; Cox and Tzoc 2023; Sullivan, Kelly, and McLaughlan 2023). Since its release in November 2022, chatGPT has predic...

Frameworks for responsible data stewardship, such as that proposed by McCoy et al. (2023), are intended to encourage and provide guidelines for data processors to engage in responsible data process...

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)

In their article, Cho and Martinez-Martin (2023) argue that developers and users of digital simulacra for modelling health and disease should involve a continued focus on causality of health states...

ABSTRACT:Bioethicists today are taking a greater role in the design and implementation of emerging technologies by "embedding" within the development teams and providing their direct guidance and recommendations. Ideally, these collaborations allow ethical considerations to be addressed in an active, iterative, and ongoing process through regular exchanges between ethicists and members of the technological development team. This article discusses a challenge to this embedded ethics approach—namely, that bioethical guidance, even if embraced by the development team in theory, is not easily (...) actionable in situ. Many of the ethical problems at issue in emerging technologies are associated with preexisting structural, socioeconomic, and political factors, making compliance with ethical recommendations sometimes less a matter of choice and more a matter of feasibility. Moreover, incentive structures within these systemic factors maintain them against reform efforts. The authors recommend that embedded bioethicists utilize principles from behavioral science (such as behavioral economics) to better understand and account for these incentive structures so as to encourage the ethically responsible uptake of technological innovations. (shrink)

The capacity of next-generation closed-loop or adaptive deep brain stimulation devices to read and write shows great potential to effectively manage movement, seizure, and psychiatric disorders, and also raises the possibility of using aDBS to electively modulate mood, cognition, and prosociality. What separates aDBS from most neurotechnologies currently used for enhancement is that aDBS remains an invasive, surgically-implanted technology with a risk-benefit ratio significantly different when applied to diseased versus non-diseased individuals. Despite a large discourse about the ethics of enhancement, (...) no empirical studies yet examine perspectives on enhancement from within the aDBS research community. We interviewed 23 aDBS researchers about their attitudes toward expanding aDBS use for enhancement. A thematic content analysis revealed that researchers share ethical concerns related to safety and security; enhancement as unnecessary, unnatural or aberrant; and fairness, equality, and distributive justice. Most researchers felt that enhancement applications for DBS will eventually be technically feasible and that attempts to develop such applications for DBS are already happening. However, researchers unanimously felt that DBS ideally should not be considered for enhancement until researchers better understand brain target localization and functioning. While many researchers acknowledged controversies highlighted by scholars and ethicists, such as potential impacts on personhood, authenticity, autonomy and privacy, their ethical concerns reflect considerations of both gravity and perceived near-term likelihood. (shrink)

The application of machine learning in health care holds great promise for improving care. Indeed, our own team is collaborating with experts in machine learning and statistical modeling to bu...

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 literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (n = 23) involved in developing next-generation DBS systems, exploring their perspectives on ethics and policy topics including whether DBS/aDBS can cause such changes. The majority of researchers reported being aware of personality, mood, or behavioral (PMB) changes in recipients of DBS/aDBS. Researchers offered varying estimates of the frequency of PMB changes. A (...) smaller majority reported changes in personality specifically. Some expressed reservations about the scientific status of the term ‘personality,’ while others used it freely. Most researchers discussed negative PMB changes, but a majority said that DBS/aDBS can also result in positive changes. Several researchers viewed positive PMB changes as part of the therapeutic goal in psychiatric applications of DBS/aDBS. Finally, several discussed potential causes of PMB changes other than the device itself. (shrink)

IntroductionDeep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.ObjectiveThis study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.Materials and MethodsSemi-structured interviews (...) with clinicians (n = 29) and caregivers (n = 44) were conducted, transcribed, and coded.ResultsUsing thematic content analysis, four major themes from clinician interviews and five major themes from caregiver interviews related to hopes and expectations were identified. Clinicians expressed concerns about caregiver false hopes (86%, 25/29) and desperation (68.9%, 20/29) in light of DBS being a last resort. As a result, 68.9% of clinicians (20/29) expressed that they intentionally tried to lower caregiver expectations about DBS outcomes. Clinicians also expressed concern that, on the flip side, unrealistic pessimism drives away some patients who might otherwise benefit from DBS (34.5%, 10/29). Caregivers viewed DBS as the last option that they had to try (61.3%, 27/44), and 73% of caregivers (32/44) viewed themselves as having high hopes but reasonable expectations. Fewer than half (43%, 19/44) expressed that they struggled setting outcome expectations due to the uncertainty of DBS, and 50% of post-DBS caregivers (14/28) expressed some negative feelings post treatment due to unmet expectations. 43% of caregivers (19/44) had experiences with clinicians who tried to set low expectations about the potential benefits of DBS.ConclusionThoughtful clinician-stakeholder discussion is needed to ensure realistic outcome expectations. (shrink)

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)

Volume 19, Issue 7, July 2019, Page 34-36.

Volume 20, Issue 7, July 2020, Page 207-209.

In 2008, the Minister of Health for Iceland issued a new regulation intended to govern assessment practices related to placement in nursing homes. One of the aims of the regulation was to ensure that those with the most severe need would have priority. This would be achieved, in part, by requiring older people to exhaust all available community‐based service options before an assessment for placement would even take place. The new regulation was received with some hostility and criticism on the (...) part of older people and their relatives, who described the changed expectations as ‘abandonment’ by the authorities. We present our analysis of these changes by examining how older people and families are reconfigured through the new policy and argue that this ‘new’ practice of de‐institutionalization is underpinned by a shifting epistemic and normative context that is working to create a new identity and a different way of life in advanced age in Iceland. The analysis has implications for other nations as well, as much policy related to older people is broadly informed by this idea that ‘home is best’, that is, the idea that more care simply needs to happen outside of institutional settings. (shrink)

This paper provides an analysis of nursing as a knowledgeable discipline. We examined ways in which knowledge operates in the practice of home care nursing and explored how knowledge might be fruitfully understood within the ambiguous spaces and competing temporalities characterizing contemporary healthcare services. Two popular metaphors of knowledge in nursing practice were identified and critically examined; evidence-based practice and the nurse as an intuitive worker. Pointing to faults in these conceptualizations, we suggest a different way of conceptualizing the relationship (...) between knowledge and practice, namely practice as being activated by contextualized knowledge. This conceptualization is captured in an understanding of the intelligent creation of context by the nurse for nursing practice to be ethical and effective. (shrink)

The Commission on the Accreditation of Law Enforcement employs rigorous evaluation techniques. Objective accreditation, such as made possible by CALEA, is important from the public’s perspective and in the national community of law enforcement.To counteract a general distrust of law enforcement agencies, the Law Enforcement Assistance Administration developed a grant to develop standards by which the quality and performance of law enforcement could be measured. LEAA developed 107 standards and, though well received by the law enforcement community, no single group (...) or agency took the initiative to begin a program to evaluate and implement the standards. In 1979, the Department of Justice established an additional grant that effectively organized the four major law enforcement groups: the International Association of Chiefs of Police, the National Sheriff’s Association, the National Organization of Black Law Enforcement Executives, and the Police Executive Research Forum. (shrink)

The Commission on the Accreditation of Law Enforcement employs rigorous evaluation techniques. Objective accreditation, such as made possible by CALEA, is important from the public’s perspective and in the national community of law enforcement.To counteract a general distrust of law enforcement agencies, the Law Enforcement Assistance Administration developed a grant to develop standards by which the quality and performance of law enforcement could be measured. LEAA developed 107 standards and, though well received by the law enforcement community, no single group (...) or agency took the initiative to begin a program to evaluate and implement the standards. In 1979, the Department of Justice established an additional grant that effectively organized the four major law enforcement groups: the International Association of Chiefs of Police, the National Sheriff’s Association, the National Organization of Black Law Enforcement Executives, and the Police Executive Research Forum. (shrink)

The expansion of research on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data (...) or would share in the future and that doing so was important for advancing the field. However, those who are sharing reported a variety of sharing partners, suggesting heterogeneity in sharing practices and lack of the broad sharing that would reflect principles of open science. Researchers described several concerns and barriers related to sharing, including privacy and confidentiality, the usability of shared data by others, ownership and control of data (including potential commercialization), and limited resources for sharing. They also suggested potential solutions to these challenges, including additional safeguards to address privacy issues, standardization and transparency in analysis to address issues of data usability, professional norms and heightened cooperation to address issues of ownership and control, and streamlining of data transmission to address resource limitations. Researchers also offered a range of views on the sensitivity of neural activity data (NAD) and data related to mental health in the context of sharing. These findings are an important input to deliberations by researchers, policymakers, neuroethicists, and other stakeholders as they navigate ethics and policy questions related to aDBS research. (shrink)

Background In the context of limited health care budgets in countries where Neglected Tropical Diseases are endemic, scaling up disease control interventions entails the setting of priorities. However, solutions based solely on cost-effectiveness analyses may lead to biased and insufficiently justified priorities. Objectives The objectives of this paper are to 1) demonstrate how a range of equity concerns can be used to identify feasible priority setting criteria, 2) show how these criteria can be fed into a multi-criteria decision-making matrix, and (...) 3) discuss the conditions under which this decision-making procedure should be carried out in a real-world decision-making context. Methods This paper draws on elements from theories of decision analysis and ethical theories of fair resource allocation. We explore six typical NTD interventions by employing a modified multi-criteria decision analysis model with predefined criteria, drawn from a priority setting guide under development by the WHO. To identify relevant evidence for the six chosen interventions, we searched the PubMed and Cochrane databases. Discussion Our in vitro multi-criteria decision analysis suggested that case management for visceral leishmaniasis should be given a higher priority than mass campaigns to prevent soil-transmitted helminthic infections. This seems to contradict current health care priorities and recommendations in the literature. We also consider procedural conditions that should be met in a contextualised decision-making process and we stress the limitations of this study exercise. Conclusion By exploring how several criteria relevant to the multi-facetted characteristics of NTDs can be taken into account simultaneously, we are able to suggest how improved priority settings among NTDs can be realised. (shrink)

BackgroundIn the context of limited health care budgets in countries where Neglected Tropical Diseases (NTDs) are endemic, scaling up disease control interventions entails the setting of priorities. However, solutions based solely on cost‐effectiveness analyses may lead to biased and insufficiently justified priorities.ObjectivesThe objectives of this paper are to 1) demonstrate how a range of equity concerns can be used to identify feasible priority setting criteria, 2) show how these criteria can be fed into a multi‐criteria decision‐making matrix, and 3) discuss (...) the conditions under which this decision‐making procedure should be carried out in a real‐world decision‐making context.MethodsThis paper draws on elements from theories of decision analysis and ethical theories of fair resource allocation. We explore six typical NTD interventions by employing a modified multi‐criteria decision analysis model with predefined criteria, drawn from a priority setting guide under development by the WHO. To identify relevant evidence for the six chosen interventions, we searched the PubMed and Cochrane databases.DiscussionOur in vitro multi‐criteria decision analysis suggested that case management for visceral leishmaniasis should be given a higher priority than mass campaigns to prevent soil‐transmitted helminthic infections. This seems to contradict current health care priorities and recommendations in the literature. We also consider procedural conditions that should be met in a contextualised decision‐making process and we stress the limitations of this study exercise.ConclusionBy exploring how several criteria relevant to the multi‐facetted characteristics of NTDs can be taken into account simultaneously, we are able to suggest how improved priority settings among NTDs can be realised. (shrink)

Ellen Gleditsch (1879–1968) became Norway’s first authority on radioactivity and the country’s second female full professor. From her many years abroad—in Marie Curie’s laboratory in Paris and at Yale University in New Haven with Bertram Boltram—she became internationally acknowledged and developed an extensive personal and scientific network. In the Norwegian scientific community she was, however, less appreciated, and her appointment as a professor in 1929 caused controversy. Despite the recommendation of the expert committee, her predecessor and his allies spread (...) the view that Gleditsch was a diligent but outdated researcher with little scientific promise—a view that apparently persists in the Norwegian chemical community today. In addition to her scientific work, Gleditsch acquired political influence by joining the International Federation of University Women in 1920; she later became the president of both the Norwegian section and the worldwide organization. She worked in particular to establish scholarships enabling women to go abroad. I once worked with a learned man who was reputed to hate women. On one occasion he stated that the new collaborator was a rare exception. When he was asked why he said, “She does not scream.” I heard this several months later and have kept it as a great compliment; yes—the biggest in my scientific career. —Ellen Gleditsch. (shrink)

Book reviewed in this article: Abortion and Woman's Choice: The State, Sexuality, and Reproductive Freedom. By Rosalind P. Petchesky. Abortion and the Politics of Motherhood. By Kristin Luker.

In lieu of an abstract, here is a brief excerpt of the content:William of Tyre, Livy, and the Vocabulary of ClassConor KostickThe most valuable source for the history of the early crusades and the Kingdom of Jerusalem is undoubtedly William of Tyre's A History of Deeds Done Beyond The Sea. A work of great scholarship and careful detail, it is particularly important in that William was Chancellor of the Kingdom of Jerusalem from 1174 and Archbishop of Tyre from 1175 to (...) his death c. 1185 and so was closely placed to the political decision making of the period. William was also a careful and highly educated scholar; although born in Jerusalem, he spent twenty years among the leading intellectuals of France and Italy and, after pursuing an avid interest in the liberal arts, devoted himself to civil law and the teachings of the masters at Bologna.1 In this respect William is far more than a narrator of crusading history, for which he would be highly regarded; he is also an important figure in the intellectual advances of the twelfth century. A close examination of William's vocabulary of social order shows that in his work he advanced the evolution of twelfth-century social concepts and also shed some light on the social structure of the Kingdom of Jerusalem.The History was commissioned by King Amalric of Jerusalem in 1167 and took its final form after redrafting by William in 1184, and it is clear that in his work William reveals a very rich vocabulary to describe social classes (see appendix). William actually uses the term classis to mean a social category of person. Current scholarship in history, sociology, and political theory would consider it anachronistic to talk about class in the twelfth century. Indeed, the use of classis as a term for social category must have been extremely rare as even such eminent scholars of lexicographers as Charles Dufresne Du Cange and Jan Frederik Niermeyer do not note it.Insofar as medieval writers before William discussed society, they referred to ordines, the orders of society. In the early part of the eleventh century even [End Page 353] the most advanced discussion of the subject of class had not progressed beyond the work of Adalbero, Bishop of Laon, and Gerard, Bishop of Cambrai, writing c. 1025, who had articulated the famous tripartite division of society according to function—those who pray, those who fight, and those who labor.2William uses the term ordo to mean order in the theological sense and ordines to indicate social order, but equally often he uses the term classis for the same purpose. For example, in describing the character of Baldwin III, he writes that "[Baldwin] acquired so great favor to himself from the commoners and the greater people that he was more popular with both classes [classis] than his predecessors."3 After the defeat of King Louis VII at Mount Cadmus, 7 January 1148, during the Second Crusade, William describes how the women fearfully cast about during for the return of fathers, lords, husbands, and sons: "and while they did not find what they sought they spent the night kept awake by the burden of their cares... nevertheless there returned in the night some of each of these classes [classis]."4Classis also appears in the phrase secundae classis homines, a phrase used three times to indicate a category of middle-class person. In describing the distant origins of the Hospitallers he says that it was a time when "there also flocked [to Jerusalem] some of the other nations, both nobles and the second class of men."5 At the fall of Balbis (3 November 1168) King Amalric's troops, "scarcely spared the old people and children, and were not any more merciful to the second class of persons."6 For his campaign beginning December 1170 the king's formidable opponent Saladin "increased his army with commoners and the second class of people."7 It is interesting to note that in these last two examples the term is referring to Muslim society, which William must have considered as socially diverse as his own. The existence and activity of a middle class of person as subjects of his history required William to use... (shrink)

How do feminists in the United Kingdom view spirituality and religion? What are their religious and spiritual attitudes, beliefs, and practices? What role do spirituality and religion play in feminists’ lives? This article presents findings from an interview-based study of 30 feminists in England, Scotland, and Wales. It identifies three characteristics of feminists’ approaches to religion and spirituality: They are de-churched, are relational, and emphasize practice. These features warrant a new approach to feminists’ relationships with religion and spirituality. Rather than, (...) as others have done, equating feminism with secularism, secularization, or alternative spiritualities, the article reveals the complex ways feminists forge religio-spiritual lives. The interview data demonstrate that it is unwise to see “spirituality” and “religion” as analytically distinct. Instead, drawing on the growing field of scholarship on “lived religion,” the article proposes conceptualizing feminist spirituality as lived religion. (shrink)

The acknowledgement of basic human vulnerability in relationships between mental health service users and professionals working in community-based mental health services (in Norway) was a starting point. The purpose was to explore how users of these services describe and make sense of their meetings with other people. The research is collaborative, with researcher and person with experienced-based knowledge cooperating through the research process. Data is derived from 19 interviews with 11 people who depend on mental health services for assistance at (...) least three times a week. Data is analysed according to the Interpretative Phenomenological Analysis (IPA). Results confirm that reciprocity is fundamental for relationships, and that recognizing the individual entails personal involvement. The participants describe a struggle, and recognizing this struggle may help the professional to achieve a deeper understanding of the individual. (shrink)

To answer tantalizing questions such as whether animals are moral or how morality evolved, I propose starting with a somewhat less fraught question: do animals have normative cognition? Recent psychological research suggests that normative thinking, or ought-thought, begins early in human development. Recent philosophical research suggests that folk psychology is grounded in normative thought. Recent primatology research finds evidence of sophisticated cultural and social learning capacities in great apes. Drawing on these three literatures, I argue that the human variety of (...) social cognition and moral cognition encompass the same cognitive capacities and that the nonhuman great apes may also be normative beings. To make this argument, I develop an account of animal social norms that shares key properties with Cristina Bicchieri's account of social norms but which lowers the cognitive requirements for having a social norm. I propose a set of four early developing prerequisites implicated in social cognition that make up what I call naïve normativity: the ability to identify agents, sensitivity to in-group/out-group differences, the capacity for social learning of group traditions, and responsiveness to appropriateness. I review the ape cognition literature and present preliminary empirical evidence supporting the existence of social norms and naïve normativity in great apes. While there is more empirical work to be done, I hope to have offered a framework for studying normativity in other species, and I conclude that we should be open to the possibility that normative cognition is yet another ancient cognitive endowment that is not human-unique. (shrink)

Andrews argues for a pluralistic folk psychology that employs different kinds of practices and different kinds of cognitive tools (including personality trait attribution, stereotype activation, inductive reasoning about past behavior, and ...