In their recent article, Porsdam Mannet alpropose to share biomedical research data more widely, securely and efficiently using blockchain technologies. 1 They present compelling arguments for how the blockchain presents both a technological innovation, and a deontologically grounded policy innovation to traditional research consent. Their proposal can be read in conversation with a rich body of evidence to suggest current consent processes are problematic on at least one of tripartite bases in biomedical research: that it be fully informed. This response (...) attempts to further the author’s discussion of social justice discourse in, and of their proposed prosent model to enhance engagement among under-represented and vulnerable populations in research, specifically. Motivating this response is the view that advancing technological capabilities is no doubt necessary, but on its own insufficient to reinvigorate distributive, procedural and social justice as guiding principles for con/prosent processes. I offer three pros and cons to consider in effort to deepen the model’s commitments to social justice to historically marginalised groups in the biomedical research enterprise. (shrink)

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...

In this paper we report findings from a commissioned report to the COVID-19 Clinical Research Coalition on approaches to streamline multinational REC review/approval during public health emergencies. As currently envisioned in the literature, a system of REC mutual recognition is theoretically possible based on shared procedural REC standards, but raises numerous concerns about perceived inequities and mistrust.

In their proof-of-concept, Meier and colleagues describe the purpose and programming decisions underpinning Medical Ethics Advisor, an automated decision support system used t...

How do we respect the legitimate privacy interests of individuals and communities about whom data relate while maximizing data’s utility as a fundamental resource? Pyrrho, Cambraia and de Vasconcel...

Any human or AI system ambitious enough to mine my every social media post, purchase, or Internet search history is likely to infer some very accurate details about me. I am in my 30s, an avid trav...

Private companies are data-rich. But market pressures to collect more, store more, and analyze more consumer data can often make them ethically bankrupt in the way of proactively protecting consume...

Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 semi-structured (...) interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows. (shrink)

Background Institutional review board (IRB) expertise is necessarily limited by maintaining a manageable board size. IRBs are therefore permitted by regulation to rely on outside experts for review. However, little is known about whether, when, why, and how IRBs use outside experts.Methods We conducted a national survey of U.S. IRBs to characterize utilization of outside experts. Our study uses a descriptive, cross-sectional design to understand how IRBs engage with such experts and to identify areas where outside expertise is most frequently (...) requested.Results The survey response rate was 18.4%, with 55.4% of respondents reporting their institution’s IRB uses outside experts. Nearly all respondents who reported using outside experts indicated they do so less than once a month, but occasionally each year (95%). The most common method of identifying an outside expert was securing a previously known subject matter expert (83.3%). Most frequently, respondents sought consultation for scientific expertise not held by current members (69.6%). Almost all respondents whose IRBs had used outside experts reported an overall positive impact on the IRB review process (91.5%).Conclusions Just over half of the IRBs in our sample report use of outside experts; among them, outside experts were described as helpful, but their use was infrequent overall. Many IRBs report not relying on outside experts at all. This raises important questions about what type of engagement with outside experts should be viewed as optimal to promote the highest quality review. For example, few respondents sought assistance from a Community Advisory Board, which could address expertise gaps in community perspectives. Further exploration is needed to understand how to optimize IRB use of outside experts, including how to recognize when expertise is lacking, what barriers IRBs face in using outside experts, and perspectives on how outside expert review impacts IRB decision-making and review quality. (shrink)

The ethics of artificial intelligence and machine learning exemplify the conceptual struggle between applying familiar pathways of ethical analysis versus generating novel strategies. Mel...

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...

Bayefsky and Berkman argue in favor of evidence-based policy development for expanded prenatal genetic testing. They propose to identify what kinds of information pregnant persons, their par...

BackgroundThe highly sensitive nature of genomic and associated clinical data, coupled with the consent-related vulnerabilities of children together accentuate ethical, legal and social issues (ELSI) concerning data sharing. The Key Implications of Data Sharing (KIDS) framework was therefore developed to address a need for institutional guidance on genomic data governance but has yet to be validated among data sharing practitioners in practice settings. This study qualitatively explored areas of consensus and dissensus of the KIDS Framework from the perspectives of Canadian (...) clinician-scientists, genomic researchers, IRB members, and pediatric ethicists.MethodsTwelve panelists participated in a three-round online policy Delphi to determine the desirability, feasibility, relative importance and confidence of twelve individual statements of the KIDS Framework. Mean and IQR were calculated from panelists’ ratings to determine the strength of consensus and polarity. Qualitative content analysis of panelists’ written responses was used to assess degree of support. Statements were validated when their combined ratings and qualitative rationales indicated high-moderate consensus (at least 70% agreement across two contiguous categories), low to no polarity (IQR at least 1.0) and strong support.ResultsNine original, and one new statement reached consensus. These statements outlined essential elements of the informed consent process, including a realistic evaluation of benefits and risks and assurance of future ethics oversight for secondary data use. Discrepant views on appropriate protections for anonymized and coded i.e. de-identified genomic data were primary sources of dissensus.ConclusionsThe validated statements provide institutions with empirically supported best practices for sharing genomic and associated clinical data involving children from the perspectives of key stakeholders. Concerted efforts to quantify informational risks that can be conveyed to patients and families are further needed to align data sharing policy with stakeholder priorities. (shrink)

Professor Bartha Maria Knoppers stepped down from the Canada Research Chair in Law and Medicine at McGill University in April 2024, a post she held for more than 20 years. Professor Knoppers consistently prioritized "humanity" in her academic work and in policymaking. As such, she forged a strong intellectual legacy, notably through her work on the human right to science, genomic and health-related data sharing, genome editing, human reproductive technologies, stem cell research, the rights of children, and population health. This (...) collection of essays honours her extraordinary academic contributions to law, policy, and medicine. (shrink)

There is an increasing body of literature proposing to include animal welfare in the United Nations Sustainable Development Agenda. The main argument is the potential positive effect that improving the welfare of animals could have over the health and welfare of humans. However, recent literature suggests that the welfare interests of animals should also be considered. Based on these premises, an analysis of the practical implications of including animal welfare in the United Nations Sustainable Development Goals is granted. The aim (...) of this study is to address this by applying the case of animals in the agriculture and aquaculture systems. Animal farming inherently affects the welfare of a substantial number of sentient animals while, the welfare of farmed animals has been connected to human wellbeing and several environmental issues. The study highlights the feasibility of incorporating the welfare of farmed animals into a future version of the SDGs. It does so by developing a model based on a set of human-focused (anthropocentric) and animal-focused (sentientistic) targets for each of the 17 goals. It has been argued that expanding the scope of the SDGs from anthropocentrism to sentientism creates a synergy between human and animal welfare and, on top of that, is progress towards sustainability. (shrink)

Natalie Stoljar ist eine australische Philosophin und Professorin für feministische, politische und Rechtsphilosophie an der McGill University in Montreal, Kanada. Neben der Forschung zur Rechtsphilosophie widmete sich Stoljar den Schnittstellen von Sozialphilosophie, politischer Philosophie und Moralpsychologie. In diesem Kontext verortet sie auch das Konzept der Autonomie.

Peer review facilitates quality control and integrity of scientific research. Although publishing policies have adapted to include the use of Artificial Intelligence (AI) tools, such as Chat Generative Pre-trained Transformer (ChatGPT), in the preparation of manuscripts by authors, there is a lack of guidelines or policies on whether peer reviewers can use such tools. The present article highlights the lack of policies on the use of AI tools in the peer review process (PRP) and argues that we need to go (...) beyond policies by creating transparent procedures that will enable journals to investigate allegations of non-compliance and take decisions that will protect the integrity of the peer review system. Reviewers found to violate relevant policies must be excluded from the process to safeguard the integrity of the peer review system. (shrink)

This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of consent: first, (...) how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision. A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed. (shrink)

Background: Moral distress is a complex phenomenon frequently experienced by critical care nurses. Ethical conflicts in this practice area are related to technological advancement, high intensity work environments, and end-of-life decisions. Objectives: An exploration of contemporary moral distress literature was undertaken to determine measurement, contributing factors, impact, and interventions. Review Methods: This state of the science review focused on moral distress research in critical care nursing from 2009 to 2015, and included 12 qualitative, 24 quantitative, and 6 mixed methods studies. (...) Results: Synthesis of the scientific literature revealed inconsistencies in measurement, conflicting findings of moral distress and nurse demographics, problems with the professional practice environment, difficulties with communication during end-of-life decisions, compromised nursing care as a consequence of moral distress, and few effective interventions. Conclusion: Providing compassionate care is a professional nursing value and an inability to meet this goal due to moral distress may have devastating effects on care quality. Further study of patient and family outcomes related to nurse moral distress is recommended. (shrink)

This volume offers papers touching on four inter-related themes: a critique of the European Enlightenment as a basis for the production of knowledge; the use of "gender" as a concept; problems in feminist theories of development; and the place of feminism in the production of knowledge.

Der Band ist der erste eines Corpus, das von der Akademie von Athen geplant und herausgegeben wird. Das Ziel ist, alle byzantinischen Fresken Griechenlands in mehreren Bänden zu publizieren. Im vorliegenden Band werden die Fresken der Insel Kythera vorgestellt. Die griechische Version dieses Bandes erschien bereits 1997 unter dem Titel: Ευϱετήϱιο Βυζαντινών Τοιχογϱαφιών Κυθήϱων.

Drawing on recent findings in the cognitive and neurosciences, this article discusses how people manage to predict each other’s actions, which is fundamental for joint action. We explore how a common coding of perceived and performed actions may allow actors to predict the what, when, and where of others’ actions. The “what” aspect refers to predictions about the kind of action the other will perform and to the intention that drives the action. The “when” aspect is critical for all joint (...) actions requiring close temporal coordination. The “where” aspect is important for the online coordination of actions because actors need to effectively distribute a common space. We argue that although common coding of perceived and performed actions alone is not sufficient to enable one to engage in joint action, it provides a representational platform for integrating the actions of self and other. The final part of the paper considers links between lower‐level processes like action simulation and higher‐level processes like verbal communication and mental state attribution that have previously been at the focus of joint action research. (shrink)

This is a profound study of Aristotle's concept of phronesis, or practical wisdom. Carlo Natali critically reconsiders Aristotle's famous doctrine of contemplations, relating it to contemporary theories of the good life.

Philosophers, psychologists, neuroscientists, and psychiatrists examine the will and its pathologies from theoretical and empirical perspectives, offering a conceptual overview and discussing schizophrenia, depression, prefrontal lobe damage, and substance abuse as disorders of volition. Science tries to understand human action from two perspectives, the cognitive and the volitional. The volitional approach, in contrast to the more dominant "outside-in" studies of cognition, looks at actions from the inside out, examining how actions are formed and informed by internal conditions. In Disorders of (...) Volition, scholars from a range of disciplines seek to advance our understanding of the processes supporting voluntary action by addressing conditions in which the will is impaired. Philosophers, psychologists, neuroscientists, and psychiatrists examine the will and its pathologies from both theoretical and empirical perspectives, offering a conceptual overview and discussing specific neurological and psychiatric conditions as disorders of volition. After presenting different conceptual frameworks that identify agency, decision making, and goal pursuit as central components of volition, the book examines how impairments in these and other aspects of volition manifest themselves in schizophrenia, depression, prefrontal lobe damage, and substance abuse. Contributors George Ainslie, Tim Bayne, Antoine Bechara, Paul W. Burgess, Anna-Lisa Cohen, Daniel Dennett, Stéphanie Dubal, Philippe Fossati, Chris Frith, Sam J. Gilbert, Peter Gollwitzer, Jordan Grafman, Patrick Haggard, Jay G. Hull, Marc Jeannerod, Roland Jouvent, Frank Krueger, Neil Levy, Peter F. Liddle, Kristen L. Mackiewitz, Thomas Metzinger, Jack B. Nitschke, Jiro Okuda, Adrian M. Owen, Chris Parry, Wolfgang Prinz, Joëlle Proust, Michael A. Sayette, Werner X. Schneider, Natalie Sebanz, Jon S. Simons, Laurie B. Slone, Sean A. Spence. (shrink)

Universities and other research institutions are increasingly providing additional training in research integrity to improve the quality and reliability of research. Various training courses have been developed, with diverse learning goals and content. Despite the importance of training that focuses on moral character and professional virtues, there remains a lack of training that adopts a virtue ethics approach. To address this, we, a European Commission-funded consortium, have designed a train-the-trainer programme for research integrity. The programme is based on (1) virtue (...) ethics, (2) the ethos of science, (3) learning by doing and (4) learner-centred teaching. The blended learning programme combines e-learning modules with participatory group sessions. Trainers are taught how to guide researchers through a series of structured exercises for fostering reflection on scientific virtues, and how to promote understanding and application of the European Code of Conduct for Research Integrity. Trainers are provided with adaptable tools and resources that can be used and combined in different ways. The programme implementation began in Spring 2020 and 470 trainers have participated to date. When trainers were asked to grade – between 0 (very bad) and 10 (excellent) – the e-learning modules and the participatory exercises, 60% scored a grade 8 or higher (median = 8, IQR = 2) for the e-learning modules, whereas 80% scored a grade 8 or higher (median = 9, IQR = 1) for the participatory exercises. A majority felt that the training helped them as a trainer to learn about ways to organise and teach a research integrity course (82%) and would recommend the interactive exercises to others (92%). Trainers have educated over 3300 researchers in Europe using our virtue-based approach. The VIRT2UE train-the-trainer programme fosters research integrity by providing trainers with exercises and tools which enable them to stimulate the development of good researchers across Europe. (shrink)

Presented as an imaginary dialogue with the author of Art and Agency , this paper displays a number of methodological shared positions: the contextualist nature of his epistemology, his focus on relations rather than on objects, his sense of pragmatism, his proximity with the notion of “person-objects” such as developed by the author of the present paper, his attention to the meso-social level and, eventually, his neutral standing in front of research objects. In spite of a few disagreements, all these (...) properties bring to light a convergence between Gell’s anthropological approach and the kind of sociological methodology presently practiced in certain trends of French sociology. (shrink)

The names of two major Gulf airlines, Qatar Airways and Emirates, have saturated the European football scene for many years, sponsoring some of the most prominent European teams and FIFA itself. Th...

Focusing primarily on the writings of Kierkegaard and secondarily on those of Kant, St. Augustine and Schelling, this work offers a novel and challenging way of approaching the concepts of anxiety, repetition, freedom and contemporaneity. Pivotal to this project is a reinterpretation of Kierkegaard’s notion of ‘taking notice’ and its elevation to the status of a central principle which opens up new interpretive dimensions.

Der großformatige, luxuriöse Band ist die englische Fassung des im gleichen Jahr erschienen griechischen Werkes mit dem Titel: Mιϰϱογϱαφίες των Βνςαντινών Χειϱογϱάφων τον Πατϱιαϱχείον Ιεϱοσολύμων. Der Autor stellt in diesem Buch 23 illuminierte Handschriften des griechisch-orthodoxen Patriarchats in Jerusalem vor, die vom 11. bis zum 15. Jh. datieren.

Im vorliegenden Aufsatz werden zwei unbekannte und für die byzantinische Kunst einzigartige Szenen aus der Kreuzauffindungslegende zum ersten Mal vorgestellt. Sie befinden sich in einer byzantinischen Kirche in der Ortschaft Spina, ca. 10 km nordöstlich von Kantanos, in der Eparchie Selino des Nomos Chania auf Kreta. Da die Fresken dieser Kirche bisher nicht publiziert wurden und die Kirche in der Literatur kaum erwähnt wird, möchte ich hier die Gelegenheit nutzen, den Bau und sein Bildprogramm kurz vorzustellen. Anschließend werden die Darstellungen (...) der Kreuzauffindung ausführlicher besprochen. (shrink)