Biobanks correspond to different situations: research and technological development, medical diagnosis or therapeutic activities. Their status is not clearly defined. We aimed to investigate human biobanking in Europe, particularly in relation to organisational, economic and ethical issues in various national contexts. Data from a survey in six EU countries were collected as part of a European Research Project examining human and non-human biobanking. A total of 147 institutions concerned with biobanking of human samples and data were investigated by questionnaires and (...) interviews. Most institutions surveyed belong to the public or private non-profit-making sectors, which have a key role in biobanking. This activity is increasing in all countries because few samples are discarded and genetic research is proliferating. Collections vary in size, many being small and only a few very large. Their purpose is often research, or research and healthcare, mostly in the context of disease studies. A specific budget is very rarely allocated to biobanking and costs are not often evaluated. Samples are usually provided free of charge and gifts and exchanges are the common rule. Good practice guidelines are generally followed and quality controls are performed but quality procedures are not always clearly explained. Associated data are usually computerised. Biobankers generally favour centralisation of data rather than of samples. Legal and ethical harmonisation within Europe is considered likely to facilitate international collaboration. We propose a series of recommendations and suggestions arising from the EUROGENBANK project. (shrink)

Bullying often results in negative coping in victims, including an increased consumption of alcohol. Recently, however, an increase in alcohol use has also been reported among perpetrators of bullying. The factors triggering this pattern are still unclear. We investigated the role of empathy in the interaction between bullying and alcohol use in an adolescent sample (IMAGEN) at age 13.97 (±0.53) years (baseline (BL), N = 2165, 50.9% female) and age 16.51 (±0.61) years (follow-up 1 (FU1), N = 1185, 54.9% female). (...) General empathic distress served as a significant moderator of alcohol use in perpetrators (F9, 493 = 17.978, p < 0.01), which was specific for males and FU1. Male perpetrators, who are generally less sensitive to distress, might thus be more vulnerable to alcohol abuse. (shrink)

Ethics is a foundational competency in healthcare inherent in everyday nursing practice. Therefore, the promotion of qualified nurses’ and nursing students’ moral competence is essential to ensure ethically high-quality and sustainable healthcare. The aim of this integrative literature review is to identify the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence. The review has been registered in PROSPERO (CRD42023386947) and reported according to the PRISMA guideline. Focusing on qualified nurses’ and nursing students’ moral competence, a (...) literature search was undertaken in January 2023 in six scientific databases: CINAHL, Cochrane Library, PsycINFO, PubMed Medline, Scopus and Web of Science. Empirical studies written in English without time limitation were eligible for inclusion. A total of 29 full texts were retrieved and included out of 5233 citations. Quality appraisal was employed using Joanna Briggs Institute checklists and the Mixed Method Appraisal Tool. Data were analysed using inductive content analysis. Research about the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence is limited and mainly explored using descriptive research designs. The contributing factors were identified as comprising two main categories: (1) human factors, consisting of four categories: individual, social, managerial and professional factors, and ten sub-categories; and (2) structural factors, consisting of four categories: educational, environmental, organisational and societal factors, and eight sub-categories. This review provides knowledge about the factors contributing to the promotion of qualified nurses’ and nursing students’ moral competence for the use of researchers, nurse educators, managers, organisations and policymakers. More research about the contributing factors is needed using complex intervention, implementation and multiple methods designs to ensure ethically sustainable healthcare. (shrink)

Research ethics committees (RECs) evaluate whether the risk-benefit ratio of a study is acceptable. Decentralized clinical trials (DCTs) are a novel approach for conducting clinical trials that potentially bring important benefits for research, including several collateral benefits. The position of collateral benefits in risk-benefit assessments is currently unclear. DCTs raise therefore questions about how these benefits should be assessed. This paper aims to reconsider the different types of research benefits, and their position in risk-benefit assessments. We first propose a categorization (...) of research benefits, based on the types of benefits that can be distinguished from the literature and ethical guidelines. Secondly, we will reconsider the position of collateral benefits. We argue that these benefits are not fundamentally different from other benefits of research and can therefore be included in risk-benefit assessments of DCTs. (shrink)

Cho and Martinez-Martin (2023) provide a compelling critique of the profound influence that data sourcing for artificial intelligence (AI) has on the healthcare sector. They emphasize the need for...

Background:Moral courage is defined as courage to act according to one’s own ethical values and principles even at the risk of negative consequences for the individual. In a complex nursing practice, ethical considerations are integral. Moral courage is needed throughout nurses’ career.Aim:To analyse graduating nursing students’ moral courage and the factors associated with it in six European countries.Research design:A cross-sectional design, using a structured questionnaire, as part of a larger international ProCompNurse study. In the questionnaire, moral courage was assessed with (...) a single question (visual analogue scale 0–100), the questionnaire also covered several background variables.Participants and research context:The sample comprised graduating nursing students (n = 1796) from all participating countries. To get a comprehensive view about graduating nursing students’ moral courage, the views of nurse managers (n = 538) and patients (n = 1327) from the same units in which the graduating nursing students practised were also explored, with parallel questionnaires.Ethical considerations:Ethical approvals and research permissions were obtained according to national standards in every country and all participants gave their informed consent.Results:The mean of graduating nursing students’ self-assessed moral courage was 77.8 (standard deviation 17.0; on a 0–100 scale), with statistically significant differences between countries. Higher moral courage was associated with many factors, especially the level of professional competence. The managers assessed the graduating nursing students’ moral courage lower (66.5; standard deviation 18.4) and the patients slightly higher (80.6; standard deviation 19.4) than the graduating nursing students themselves.Discussion and conclusions:In all countries, the graduating nursing students’ moral courage was assessed as rather high, with differences between countries and populations. These differences and associations between moral courage and ethics education require further research. (shrink)

We implemented a user-centered approach to the design of an artificial intelligence (AI) system that provides users with access to information about the workings of the United States federal court system regardless of their technical background. Presently, most of the records associated with the federal judiciary are provided through a federal system that does not support exploration aimed at discovering systematic patterns about court activities. In addition, many users lack the data analytical skills necessary to conduct their own analyses and (...) convert data into information. We conducted interviews, observations, and surveys to uncover the needs of our users and discuss the development of an intuitive platform informed from these needs that makes it possible for legal scholars, lawyers, and journalists to discover answers to more advanced questions about the federal court system. We report on results from usability testing and discuss design implications for AI and law practitioners and researchers. (shrink)

Multimodal communication research focuses on how different means of signalling coordinate to communicate effectively. This line of research is traditionally influenced by fields such as cognitive and neuroscience, human-computer interaction, and linguistics. With new technologies becoming available in fields such as natural language processing and computer vision, the field can increasingly avail itself of new ways of analyzing and understanding multimodal communication. As a result, there is a general hope that multimodal research may be at the “precipice of greatness” due (...) to technological advances in computer science and resulting extended empirical coverage. However, for this to come about there must be sufficient guidance on key (theoretical) needs of innovation in the field of multimodal communication. Absent such guidance, the research focus of computer scientists might increasingly diverge from crucial issues in multimodal communication. With this paper, we want to further promote interaction between these fields, which may enormously benefit both communities. The multimodal research community (represented here by a consortium of researchers from the Visual Communication [ViCom] Priority Programme) can engage in the innovation by clearly stating which technological tools are needed to make progress in the field of multimodal communication. In this article, we try to facilitate the establishment of a much needed common ground on feasible expectations (e.g., in terms of terminology and measures to be able to train machine learning algorithms) and to critically reflect possibly idle hopes for technical advances, informed by recent successes and challenges in computer science, social signal processing, and related domains. (shrink)

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict (...) or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:ECHIC—The European Consortium for Humanities Institutes and Centres 2023 Annual ConferenceIlenia Vittoria CasmiriEcological Mindedness and Sustainable Wellbeing, ECHIC—The European Consortium for Humanities Institutes and Centres 2023 Annual Conference, May 25–27, 2023, University of Ferrara, ItalyThis year’s annual conference of the European Consortium for Humanities Institutes and Centres (ECHIC) invited international scholars with diverse backgrounds to explore visions of a desirable future world that is both environmentally (...) sustainable and socially just. In stressing the social and political relevance of the humanities in Europe today, the main goal of the Consortium, as it is articulated on the conference website, is the pursuit of the highest international standards of excellence with a spirit of innovation and exploration of new research areas:Since the World Commission on Environment and Development published Our Common Future (1987) [commonly known as the Brundtland Report], the notion of... sustainability has been expanded to incorporate environmental, cultural, legal, and economic features of a low-carbon future and to encompass the wellbeing of all living species, which involves material aspects such as the social acceptance of resource-efficient transitions and immaterial ones such as flourishing human capabilities. [End Page 625]The participants of the 2023 ECHIC conference on Ecological Mindedness and Sustainable Wellbeing presented original, multidisciplinary perspectives, and offered valuable opportunities to develop holistic approaches to the prismatic issue of environmental sustainability. Bringing together cultural diversity as well as local and global perspectives, keynoters and panelists addressed the vast array of challenges imposed by the perpetuation of anthropocentric worldviews. Their challenge to traditional demarcations between the humanities, the social sciences, economy, law, architecture, engineering, and the life and medical sciences, generated synergies for exploring interconnections between life forms, resources, and heritage. While the theoretical frameworks varied considerably, they all advocated for the need to overcome ideological, cultural, and spatial barriers in favor of broader, more inclusive approaches to other disciplines, other cultures, other humans, other species. Overall, the conference not only exposed the cultural and economic roots of social inequality and of uneven distribution of resources, thanks to unsustainable modes of capitalist production and consumption, but also highlighted the media’s positive effect in eliciting pro-environmental behaviors.Toward More Sustainable FuturesThe prismatic nature of the concept of sustainability inspired keynote speakers Alexa Weik von Mossner (University of Klagenfurt), Adrian Ivakhiv (University of Vermont), Tim Waterman (University College London), and Antonio López (John Cabot University) to address climate apocalypse impacts on the human physical and psychological well-being from diverse personal and academic backgrounds.In the opening keynote lecture, “Growing Hope: Narratives of Food Justice and Sustainability,” Weik von Mossner explores the psychological implications of affect and emotion in the communication of environmental issues. Her diachronic account illustrates the rise and fall of the South Central Farm in Los Angeles, a sanctuary for locals by providing fresh produce, stimulating a sense of community, and representing a symbol of resilience against systemic inequalities. Weik Von Mossner elucidates the psychological benefits accruing from exposure to such a sustainably inhabited space. Her analysis of Scott Hamilton Kennedy’s documentary, The Garden (2008), affirms that climate change narratives across media may prompt food justice activism (Retzinger 2011, 337) by eliciting the emotional engagement of its audience. [End Page 626]However, observes von Mossner, the greater the popularity of the Farm, the greater the threat posed to its existence. Through documentaries, news articles, and online campaigns, the South Central Farm has received national and international attention. At the same time, media have shed light on the struggles faced by marginalized communities and provided a solid basis for discussions on social justice, environmental activism, and the value of communal spaces. She explains that activists used social media to voice their concerns about the potential eviction and the loss of a vital resource for the local community, leading to an outpouring of support from environmentalists and celebrities who had realized to what extent the predominantly low-income, minority community was affected by limited access to fresh food and green spaces.Adrian Ivakhiv, delivering his keynote “How to Face the Angel of History: A Call to Anthropocenic Conscience” the following day, suggests that a pervasive lack of an emotional... (shrink)

In our article, we share the lessons we have learned after creating and running a successful legal laboratory over the past seven years at Yale Law School. Our legal laboratory, which focuses on the intersection of law and severe brain injury, represents a unique pedagogical model for legal academia, and is closely influenced by the biomedical laboratory.

Hospital ethics committees (HECs) are expected to play extremely broad and pivotal roles such as case consultation, education of staffs on healthcare ethics, and institutional policy formation. Despite the growing importance of HECs, there are no standards for setup and operation of HECs, and composition and activities of HECs at each institution are rarely disclosed in Japan. In addition, there is also a lack of information sharing and collaboration among HECs. Therefore, the authors established the Consortium of Hospital Ethics (...) Committees (CHEC) in October 2020, which has been regularly hosting a couple of core activities. One is the Healthcare Ethics Forum, held monthly online for CHEC members to freely discuss HECs and healthcare ethics consultation. The other is the Collaboration Conference of Hospital Ethics Committees, intended to provide a place for HEC members and administrative officers from across Japan to exchange information of their HECs, learn from each other, and cooperate to operate HECs appropriately. In this paper, the authors introduced CHEC as well as reported the results of a questionnaire survey conducted at the first conference among participating facilities, suggesting the diverse structures and activities of HECs in Japan. (shrink)

This paper describes the first three-year experience of the Consortium Ethics Program (CEP-1) of the University of Pittsburgh Center for Medical Ethics, and also outlines plans for the second three-year phase (CEP-2) of this experiment in continuing ethics education. In existence since 1990, the CEP has the primary goal of creating a cost-effective, permanent ethics resource network, by utilizing the educational resources of a university bioethics center and the practical expertise of a regional hospital council. The CEP's conception and (...) specific components stem from recognition of the need to make each hospital a major focus of educational efforts, and to provide academic support for the in-house activities of the representatives from each institution. (shrink)

A report of this meeting is published in this issue: Van Steendam, G., et al. The Budapest Meeting 2005—Intensified Networking on Ethics of Science: The case of Reproductive Cloning, Germline Gene Therapy and Human Dignity, Science and Engineering Ethics 12/4: 731–793.

This paper arose out of the 2017 international conference on AI and law doctoral consortium. There were five students who presented their Ph.D. work, and each of them has contributed a section to this paper. The paper offers a view of what topics are currently engaging students, and shows the diversity of their interests and influences.

This is a report on the Doctoral Consortium co-located with the 17th International Conference on Artificial Intelligence and Law in Montreal.

The Health Humanities Consortium was established in 2015 to “promote health humanities scholarship, education, and practice through transdisciplinary methods and theories that focus on the intersection of the arts and humanities, health, illness, and healthcare.” As the founding co-chairs of the HHC, we provide a history of the founding of this organization in this article, describing the journey of its creation, the choices and challenges it faced as a new organization, and our hopes for a rich future.

At the request of the Midwest Bioethics Center (MBC), we surveyed nurses' and physicians' attitudes and needs regarding Hospital Ethics Committees (HECs). The primary objective of this research project was to inform the practices and policies of the Ethics Committee Consortium of the Bioethics Center.Four thousand eight hundred and twenty-nine surveys were distributed to the medical and nursing staff of eight Kansas City metropolitan area hospitals. One thousand and fifty-five surveys were returned, representing a response rate of 21%.

The prevailing model for encouraging innovation based on patents and market-oriented raises at least two economic and ethical issues: it imposes barriers on individuals and developing countries governments' access to medicines by defining prices that do not match their income, and the unavailability of new or appropriate products to address the health problems of these populations. In the last decade, this scenario has undergone some changes due to the emergence of new actors, the contribution of aid resources, the introduction to (...) the market of new products against neglected diseases, the development of new governmental healthcare policies and research programs, etc. One example of such initiatives is the Fixed-Dose Artesunate Combination Therapy (FACT) project consortium, which brought together institutions with different natures from both the North and the South, for the development of two antimalarial fixed-dose combinations recommended by the WHO – artesunate-amodiaquine (ASAQ) and artesunate-mefloquine (ASMQ). This paper proposes to describe and analyze the ASMQ consortium, which is the result of a new pharmaceutical development approach, based on a different paradigm – needs-driven instead of market-driven –, collaborative, with strategic participation of institutions from the South, funded by alternative resources (public and philanthropic). Thus, it represents an interesting object of study for bioethical debates on intellectual property and innovation, and its analysis is justified in light of the current debate on ways of stimulating needs-driven pharmaceutical innovation. (shrink)

BackgroundIn the context of translational research, researchers have increasingly been using biological samples and data in fundamental research phases. To explore informed consent practices, we conducted a retrospective study on informed consent documents that were used for CARPEM’s translational research programs. This review focused on detailing their form, their informational content, and the adequacy of these documents with the international ethical principles and participants’ rights.MethodsInformed consent forms (ICFs) were collected from CARPEM investigators. A content analysis focused on information related to (...) biological samples and data treatment (context of sampling and collect, aims, reuse, consent renewal), including the type of consent. An automatic assessment of the readability of the ICFs were performed with the IT program “Flesch Score”.Results29 ICFs from 25 of 49 studies were analyzed after selection criteria were applied. Three types of consent were identified: 11 broad consents, six specific consents, and two opt-out consents. The Flesch Scores showed that most of the documents were too complex to be fully understood by most of the potential research participants. Most of the biological samples were collected during the healthcare routine, but the information content about secondary use of biological samples varied between ICFs. All documents mentioned personal data treatment but information about their reuse was not standardized in the ICFs.ConclusionsOur review of current IC procedures of CARPEM showed that practices could be improved considering new translational research methods. “Old fashion written ICFs” should be adapted to the translational research approach, to better respect individual rights and international research ethics principles. In this context, theoretically, a digital tool allowing dynamic information and consent of participants, through an electronic interactive platform may be a good way to promote more active participation in research. Nevertheless, its feasibility in the complex environment of biological samples and data research remains to prove. The way of a combination of a broad consent followed by dynamic information may be alternatively tested. (shrink)

The term “globalization” was popularized by Marshall McLuhan in War and Peace in the Global Village. In the book, McLuhan described how the global media shaped current events surrounding the Vietnam War [1] and also predicted how modern information and communication technologies would accelerate world progress through trade and knowledge development. Globalization now refers to a broad range of issues regarding the movement of goods and services through trade liberalization, and the movement of people through migration. Much has also been (...) written on the global effects of environmental degradation, population growth, and economic disparities. In addition, the pace of scientific development has accelerated, with both negative and positive implications for global health. Concerns for national health transcend borders, with a need for shared human security and an enhanced role for international cooperation and development [2]. These issues have significant bioethical implications, and thus a renewed academic focus on the ethical dimensions of public health is needed. Future developments in science and health policy also require a firm grounding in bioethical principles. These core principles include beneficence; nonmaleficence ; respect for persons and human dignity ; and attention to equity and social justice. According to the World Health Organization [3], global ethical approaches should monitor and update ethical norms for research, as necessary; anticipate ethical implications of advances in science and technology for health; apply internationally accepted codes of ethics; ensure that agreed standards guide future work on the human genome; and ensure that quality in health systems and services is assessed and promoted. (shrink)

A Scientific Integrity Consortium developed a set of recommended principles and best practices that can be used broadly across scientific disciplines as a mechanism for consensus on scientific integrity standards and to better equip scientists to operate in a rapidly changing research environment. The two principles that represent the umbrella under which scientific processes should operate are as follows: Foster a culture of integrity in the scientific process. Evidence-based policy interests may have legitimate roles to play in influencing aspects (...) of the research process, but those roles should not interfere with scientific integrity. The nine best practices for instilling scientific integrity in the implementation of these two overarching principles are Require universal training in robust scientific methods, in the use of appropriate experimental design and statistics, and in responsible research practices for scientists at all levels, with the training content regularly updated and presented by qualified scientists. Strengthen scientific integrity oversight and processes throughout the research continuum with a focus on training in ethics and conduct. Encourage reproducibility of research through transparency. Strive to establish open science as the standard operating procedure throughout the scientific enterprise. Develop and implement educational tools to teach communication skills that uphold scientific integrity. Strive to identify ways to further strengthen the peer review process. Encourage scientific journals to publish unanticipated findings that meet standards of quality and scientific integrity. Seek harmonization and implementation among journals of rapid, consistent, and transparent processes for correction and/or retraction of published papers. Design rigorous and comprehensive evaluation criteria that recognize and reward the highest standards of integrity in scientific research. (shrink)

The COVID-19 pandemic that began in 2019 has created an acute fear of economic crisis, and people have experienced the state of perceived job insecurity. Several measures were taken to control this deadly pandemic, but it still affected the majority of global operational activities. This study addresses the United Nation’s Sustainable Development Goal number 8 that relates to decent work and economic growth. This quantitative study examines the impact of fear associated with economic crisis and perceived job insecurity on mental (...) health with the moderating effect of surface and deep acting. Surface acting is displaying fake emotions, and deep acting is modifying inner feelings according to the required emotions. This study used sample data from private-sector employees and applied SmartPLS for structural model assessment. As many organizations took more challenging decisions to sustain their business operations, the study therefore analyzes the impact of the pandemic on private sector employees. The two main findings of the study are: surface acting moderates the relationships of fear of economic crisis and perceived job insecurity with mental health and declines the impact of both on mental health, while deep acting negatively moderates the relationships of fear of economic crisis and perceived job insecurity with mental health and improved mental health even in the presence of both. The study highlighted the importance of deep acting at workplaces to sustain employees’ mental and psychological stability. Organizations could introduce emotional labor strategies and strengthen the mental health of their employees against the underlying fear of economic crisis and perceived job insecurity. (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)

The Protein Ontology (PRO) provides a formal, logically-based classification of specific protein classes including structured representations of protein isoforms, variants and modified forms. Initially focused on proteins found in human, mouse and Escherichia coli, PRO now includes representations of protein complexes. The PRO Consortium works in concert with the developers of other biomedical ontologies and protein knowledge bases to provide the ability to formally organize and integrate representations of precise protein forms so as to enhance accessibility to results of (...) protein research. PRO (http://pir.georgetown.edu/pro) is part of the Open Biomedical Ontologies (OBO) Foundry. (shrink)

The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project. They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans researchers, and were introduced (...) and defended for the HGP by the nematode biologists John Sulston and Robert Waterston. In the C. elegans community, and subsequently in the HGP, daily sharing served the pragmatic goals of quality control and project coordination. Yet in the HGP human genome, we also argue, the Bermuda Principles addressed concerns about gene patents impeding scientific advancement, and were aspirational and flexible in implementation and justification. They endured as an archetype for how rapid data sharing could be realized and rationalized, and permitted adaptation to the needs of various scientific communities. Yet in addition to the support of Sulston and Waterston, their adoption also depended on the clout of administrators at the US National Institutes of Health and the UK nonprofit charity the Wellcome Trust, which together funded 90% of the HGP human sequencing effort. The other nations wishing to remain in the HGP consortium had to accommodate to the Bermuda Principles, requiring exceptions from incompatible existing or pending data access policies for publicly funded research in Germany, Japan, and France. We begin this story in 1963, with the biologist Sydney Brenner’s proposal for a nematode research program at the Laboratory of Molecular Biology at the University of Cambridge. We continue through 2003, with the completion of the HGP human reference genome, and conclude with observations about policy and the historiography of molecular biology. (shrink)

The value of any kind of data is greatly enhanced when it exists in a form that allows it to be integrated with other data. One approach to integration is through the annotation of multiple bodies of data using common controlled vocabularies or ‘ontologies’. Unfortunately, the very success of this approach has led to a proliferation of ontologies which itself creates obstacles to integration. The Open Biomedical Ontologies (OBO) consortium has set in train a strategy to overcome this problem. (...) Existing OBO ontologies, including the Gene Ontology, are undergoing a process of coordinated reform and new ontologies being created on the basis of an evolving set of shared principles governing ontology development. The result is an expanding family of ontologies designed to be interoperable, logically well-formed, and to incorporate accurate representations of biological reality. We describe the OBO Foundry initiative, and provide guidelines for those who might wish to become involved. (shrink)

As Part of the Omnibus Budget Reconciliation Act of 1990, the Patient Self Determination Act legislates new responsibilites for healthcare facilities. The authors served as members of the California Consortium on Patient Self-Determination, and the materials produced by this group offer healthcare facilities a valuable guide for implementing the PSDA. The ACt follows a historical trend led by doctrines of informed consent and increasing patient autonomy regarding rights to accept or refuse medical treatment and to execute advance directives. The (...) requirements of the Act will influence healthcare facilities and how they communicate with patients about advance directives. Although the Act seeks to increase awareness of advance directices among all participants in healthcare interactions, it could pose major stumbling blocks to providing sensitive and humane care if certain concerns are nor addressed adequatley. The benefits of the Act could be far reaching and substantial for patients and healthcare facilities alike. (shrink)

Representing species-specific proteins and protein complexes in ontologies that are both human and machine-readable facilitates the retrieval, analysis, and interpretation of genome-scale data sets. Although existing protin-centric informatics resources provide the biomedical research community with well-curated compendia of protein sequence and structure, these resources lack formal ontological representations of the relationships among the proteins themselves. The Protein Ontology (PRO) Consortium is filling this informatics resource gap by developing ontological representations and relationships among proteins and their variants and modified forms. (...) Because proteins are often functional only as members of stable protein complexes, the PRO Consortium, in collaboration with existing protein and pathway databases, has launched a new initiative to implement logical and consistent representation of protein complexes. We describe here how the PRO Consortium is meeting the challenge of representing species-specific protein complexes, how protein complex representation in PRO supports annotation of protein complexes and comparative biology, and how PRO is being integrated into existing community bioinformatics resources. The PRO resource is accessible at http://pir.georgetown.edu/pro/. (shrink)

This book was born out of two interdisciplinary seminars held in 2014. The first one was the Climate Ethics and Climate Economics workshop in April adjoined as part of the European Consortium for Political Research Joint Sessions 2014 in Salamanca. Spurred on by the invigorating discussions, the participants decided to put together more workshops, with Ethical Underpinnings of Climate Economics following in Helsinki in November that same year. Without the organisers of these workshops the collaborators of this book would (...) not have come together: Matthew Rendall, Dominic Roser, Sade Hormio, Simo Kyllonen, Aaron Maltais and Joanna Burch-Brown. We would also like to thank all the participants at the workshops for making them so enjoyable and worthwhile. The Helsinki workshop that this book was named after was organized as part of the Climate Ethics and Economics project, led by Aki Lehtinen and funded by the University of Helsinki. The three-year project is based at the Social and Moral Philosophy discipline in the Department of Political and Economic Studies. The workshop itself was made possible by funding from the Academy of Finland Centre of Excellence in the Philosophy of the Social Sciences, which also helped to host the event. (shrink)

Prevention of age-related disorders is increasingly in focus of health policies, and it is hoped that early intervention on processes of deterioration can promote healthier and longer lives. New opportunities to slow down the aging process are emerging with new fields such as personalized nutrition. Data-intensive research has the potential to improve the precision of existing risk factors, e.g., to replace coarse-grained markers such as blood cholesterol with more detailed multivariate biomarkers. In this paper, we follow an attempt to develop (...) a new aging biomarker. The vision among the project consortium, comprising both research and industrial partners, is that the new biomarker will be predictive of a range of age-related conditions, which may be preventable through personalized nutrition. We combine philosophical analysis and ethnographic fieldwork to explore the possibilities and challenges of managing aging through bodily signs that are not straightforwardly linked to symptomatic disease. We document how the improvement of measurement brings about new conceptual challenges of demarcating healthy and unhealthy states. Moreover, we highlight that the reframing of aging as risk has social and ethical implications, as it is generative of normative notions of what constitutes successful aging and good citizenship. (shrink)

This edited collection had its origins in a two-day conference held at the Tate Britain, organised collaboratively by research staff and students at Middlesex University and the London Consortium in order to celebrate the 250th Anniversary of the publication of Edmund Burke's famous book on the sublime. The conference was funded by Middlesex University, the London Consortium and the Tate Britain's AHRC-funded "Sublime Object: Nature, Art and Language" research project. The conference set out to critically examine the legacy (...) of the sublime in contemporary art, culture and society and to assess the value and the dangers of this concept as it is articulated in current thought and practice. The book selected from and expanded on the papers delivered at the conference in order to pursue this goal further. It was broken into themed sections (each of which had an introduction), each exploring an different issue around contemporary uses of the sublime. The sections were: 1. Nature, Ecology and the Sublime; 2. The Sublime After Kant; 3. Capitalism, Terror, Art and the Sublime; 4. Baroque and Beyond: Art, Sex and the Sublime; 5. The Cinematic Sublime. The volume reflects the interdisiplinarity of the concept of the sublime today, and includes essays whose appraoches come from aesthetics and ethics, ecological and political thought, psychoanalysis, feminism, film studies, literary studies, art history and popular culture. It includes papers by internationally renowned authors from the UK, America and Europe alongside the new voices of younger academics. The contributors were: Jane Bennett (Johns Hopkins University), Mark Bould (University of the West of England), Eu Jin Chua (London Consortium), Gudrun Filipska (Middlesex University), Cornelia Klinger (Institute for Human Sciences, Vienna / University of Tübingen, Germany), Esther Leslie (Birkbeck), William McDonald (Middlesex Univeristy), Laura Mulvey (Birkbeck), Claire Pajaczkowska (Royal College of Art), Griselda Pollock (University of Leeds), Gene Ray (Geneva University of Art and Design), Bettina Reiber (Central St. Martins), Jan Rosiek (University of Copenhagen), Sherryl Vint (Brock University, Canada), and Luke White (Middlesex University). (shrink)

This article discusses how advocacy can be taught to both law and public health students, as well as the role that public health law faculty can play in advocating for public health. Despite the central role that advocacy plans in translating public health research into law, policy advocacy skills are rarely explicitly taught in either law schools or schools of public health, leaving those engaged in public health practice unclear about whether and how to advocate for effective policies. The article (...) explains how courses in public health law and health justice provide ideal opportunities to teach advocacy skills, and it discusses the work of the George Consortium, which seeks to engage public health law faculty in advocacy efforts. (shrink)

In this essay we argue for the possibility to describe the co-presence of species in a community as a consortium built by acoustic codes, using mainly the examples of bird choruses. In this particular case, the consortium is maintained via the sound-tope that different bird species create by singing in a chorus. More generally, the formation of acoustic codes as well as cohesive communicative systems (the consortia) can be seen as a result of plastic adaptational behaviour of the (...) specimen who can solve and avoid conflicts both with conspecifics and with other species in the vicinity. Thus, sign-relations appear to resolve potential conflicts, and as a foundation for symbiotic aggregations. The spatio-temporal configuration of consortia—their chronotope—includes several eco-fields as respective to different functions of the participating organisms. Biological study is combined with a semiotic approach that, as we suggest, should be more often used together to effectively describe ecological processes. (shrink)

The Common Anatomy Reference Ontology (CARO) is being developed to facilitate interoperability between existing anatomy ontologies for different species, and will provide a template for building new anatomy ontologies. CARO has a structural axis of classification based on the top-level nodes of the Foundational Model of Anatomy. CARO will complement the developmental process sub-ontology of the GO Biological Process ontology, using it to ensure the coherent treatment of developmental stages, and to provide a common framework for the model organism communities (...) to classify developmental structures. Definitions for the types and relationships are being generated by a consortium of investigators from diverse backgrounds to ensure applicability to all organisms. CARO will support the coordination of cross-species ontologies at all levels of anatomical granularity by cross-referencing types within the cell type ontology (CL) and the Gene Ontology (GO) Cellular Component ontology. A complete cross-species CARO could be utilized in other ontologies for cross-product generation. (shrink)