U.S. federal research funding is generally justified by promises of public benefits, but the specific natures and distribution of such benefits often remain vague and ambiguous. Furthermore, the metrics by which outcomes are reported often do not necessarily or strongly imply the achievement of public benefits. These ambiguities and discontinuities make it difficult to assess the public outcomes of federal research programs. This study maps the terms in which the purposes and the outcomes of Advanced Research (...) Projects Agency-Energy -a relatively young and innovatively structured federal research agency-have been discussed and reported. I find that ARPA-E’s creation and funding have been justified with reference to a broad repertoire of economic, environmental, and national security values, but that the agency has been evaluated only through intermediate scientific and economic metrics and study of internal organizational structure. I suggest that these means of assessment elide ARPA-E’s lack of the financial scale, long time horizon, built-in customer, and radical vision which have been historically important to high-impact federal innovation, and I recommend the tracking of metrics more directly related to ARPA-E’s public value purposes as the agency grows older. This discussion illustrates the inadequacy of currently widespread metrics and conventional wisdom for the design and assessment of societally relevant research. (shrink)

The Laboratory for Research on the Structure of Matter, University of Pennsylvania, was built in 1965 as part of the Advanced Research Projects Agency's Interdisciplinary Laboratories program intended to foster interdisciplinary research and training in materials science. The process that led to the construction of the four-story structure served as the focus of intense debates over the meaning and process of interdisciplinary research in universities. The location of the building, its size, internal design, (...) and functionalities were all subject to heated negotiations among patrons, scientists, and university administrators, to find the proper place of interdisciplinary materials science on the University of Pennsylvania's campus. Building on the recent work on laboratory architecture, this paper argues that the negotiations and controversies over the LRSM building were concrete representations of the broader struggle over the appropriate place of interdisciplinary research and training within a university. (shrink)

International research is an essential means of reducing health disparities between and within countries and should do so as a matter of global justice. Research funders from high-income countries have an obligation of justice to support health research in low and middle-income countries that furthers such objectives. This paper investigates how their current funding schemes are designed to incentivise health systems research in LMICs that promotes health equity. Semi-structured in-depth interviews were performed with 16 grants officers (...) working for 11 funders and organisations that support health systems research: the Alliance for Health Policy and Systems Research, Comic Relief, Doris Duke Foundation, European Commission, International Development Research Centre, Norwegian Agency for Development Cooperation, Research Council of Norway, Rockefeller Foundation, UK Department of International Development, UK Medical Research Council, and Wellcome Trust. Thematic analysis of the data demonstrates their funding schemes promote health systems research with five key features that advance health equity: being conducted with worst-off populations, focusing on research topics that advance equitable health systems, having LMIC ownership of the research agenda, strengthening LMIC research capacity, and having an impact on health disparities. The different types of incentives that encouraged proposed projects to have these features are identified and classified by their strength. It is suggested that research funders ought to create and maintain funding schemes with strong incentives for the features identified above in order to more effectively help reduce global health disparities. (shrink)

Research in the humanities and social sciences thrives on critical reflections that unfold with each research project, not only in terms of knowledge created, but in whether chosen methodologies served their purpose. Ethics forms the bulwark of any social science research methodology and it requires continuous engagement and reengagement for the greater advancement of knowledge. Each chapter in this book will draw from the empirical knowledge created through intensive fieldwork and provide an account of ethical questions faced (...) by the contributors, placing them in the context of contemporary debates surrounding the theory and practice of ethics. The chapters have been thematically organized into five sections: Feminist Ethics: Cross-Cultural Reflections and Its Implications for Change; Researching Physical and Sexual Violence in Non-Academic Settings: A Need for Ethical Protocols; Human Agency, Reciprocity, Participation and Activism: Meanings for Social Science Research Ethics; Emotions, Conflict and Dangerous Fields: Issues of “Safety” and Reflective Research; and Social Science Education: Training in Ethics or “Ethical Training” and “Ethical Publicizing." This inter-disciplinary volume will interest students and researchers in academic and non-academic settings in core disciplines of Anthropology, Sociology, Law, Political Science, International Relations, Geography, or inter-disciplinary degrees in Development Studies, Health Studies, Public Health Policy, Social Policy, Health Policy, Psychology, Peace and Conflict studies, and Gender Studies. The book features a foreword by His Holiness The Dalai Lama. (shrink)

The thoughts presented here never appeared in research proposals, but nevertheless grew at the Stanford University Artificial Intelligence Laboratory over the years 1971 through 1980 under support from the National Institutes of Health, the Defense Advanced Research Projects Agency, the National Science Foundation and the National Aeronautics and Space Administration, and more recently at the Carnegie-Mellon University Robotics Institute under Office of Naval Research contract number N00014-81-K-0503.

New advances in neuroscience promise innovations in national security, especially in the areas of law enforcement, intelligence collection, and armed conflict. But ethical questions emerge about how we can, and should, use these innovations. This book draws on the open literature to map the development of neuroscience, particularly through funding by the Defense Advanced Research Projects Agency, in certain areas like behavior prediction, behavior modification, and neuroenhancement, and its use in the creation of novel weapons. It (...) shows how advances in neuroscience and new technologies raise ethical issues that challenge the norms of law enforcement, intelligence collection, and armed conflict, broadly grouped under the term "national security." Increasing technological sophistication without attention to ethics, this book argues, risks creating conditions for the development of "dual-use" technologies that may be prone to misuse, are grounded in an incomplete understanding of the brain, or are based on a limited view of the political contexts in which these technologies arise. A concluding section looks at policy and regulatory options that might promote the benefits of emerging neuroscience, while mitigating attendant risks. Key Features: First broad survey of the ethics of neuroscience as it applies to national security Innovative ethical analysis over a range of cross-cutting technologies including behavior prediction and modification tools, human enhancement, and novel lethal and nonlethal weapons Ethical analysis covering all stages from the development, testing, and use of these technologies; and decisions from the individual scientist to the nation state Strong policy focus at multiple levels, from self-governance to international regulation Combination of philosophical analysis with grounded, practical recommendations. (shrink)

The manipulation of materials, and to some extent also their systematic classification, form an integral part of the skills and culture of all societies. Yet it took long for proper sciences to develop out of many processing procedures, tapping the accumulated knowledge about specific material characteristics. In the late 20th century an overarching science of workable materials emerged: materials science. This concept and term originated from major boosts in materials research during WWII and the Cold War, first financed by (...) the U.S. Department of Defense and the Advanced Research Project Agency. The COSMAT-Report from 1974, written by the American Presidential Science Advisory Committee’s „Committee on the Survey of Materials Science and Engineering" four years after its inception, and subsequent reports heralded in the second institutionalization phase of materials science in the USA and with some delay also elsewhere. As the field continued to expand, the demand grew from within in the late 1990s for disciplinary status. This article sorts these claims from the various camps and sets them in the context of unfolding institutional change. The developments within the German-speaking realm, thus far unduly neglected in these debates, are added. I close with a systematic discussion of eight indicator arguments for or against a convergence of this complex field of research into a single coherent discipline. Against Bensaude-Vincent’s thesis that materials science still is an “aggregation of fragments of knowledge", I argue that by 2010 materials science did indeed achieve disciplinary status in a historically rare and enduring process of discipline formation through “emergence by integration" rather than by differentiation. (shrink)

The aim here is to implement intelligence in an engineered processing substrate – a machine mind, as it were. This solution is clearly related to work in artificial intelligence (AI) and shares many of its analytical requirements and synthesis goals, but the objective is unambiguously to make individual human minds independent of a single substrate. Brain–machine interfaces require adaptations for communication to be possible, emphasizing either the machine or the brain. Brain emulation on general‐purpose computers is convenient, because model functions (...) can be modified easily. Ultimately, a mature emulation demands a suitable computing substrate. Theoretical debates occasionally focus on the question of determinism and computation in the Von Neumann sense. ARPANET (the Advanced Research Projects Agency Network) useful for university projects and for the military, but it was not immediately obvious what sort of civilian applications would thrive on such a computer network. (shrink)

ArgumentSpace projects represent, after World War II, the archetype of large-scale organization of scientific practices that are flexible, temporary, and oriented towards specific goals. A new form of activity, the project, emerged through the management of technical means, allocation of skills, and coordination of various players. Project management emerged as the synthesis of a set of social practices designed to subordinate as well as synchronize the initiatives of researchers, engineers, and technicians who had temporarily joined forces. This article presents (...) the genesis and deployment of the Franco-Soviet space program ARCAD 3 whose purpose was to study the magnetosphere with a satellite. This study is situated at the junction of three historiographical dimensions: scientific writings, links between action and graphic forms, and Big Science. The diagrams, organization charts and schedules produced by the French space agency throughout the entire project form the documentary substrata of this analysis. These graphic management tools define the role of each player, designate fields of competence, and specify the temporality of actions. A self-monitoring system as well as surveillance instrument, diagrams, organization charts and schedules are linked to form a certain vision of authority along the lines of the “neoliberal governmentality” defined by Michel Foucault. By defining in advance and in writing all the possible (or impossible) relationships, the chronological order of activities as well as the actions to be performed, graphic project management tools contribute to the transfer of coercive panoptic mechanisms towards a minimal organization of relationships between individuals. (shrink)

The Space Act of 1958 begins, “The Congress hereby declares that it is the policy of the United States that activities in space should be devoted to peaceful purposes for the benefit of all mankind.” In March 1982, a Defense Department official commented on the statute: “We interpret the right to use space for peaceful purposes to include military uses of space to promote peace in the world.”1 The absurdity of this willful misinterpretation amazed me on first reading, and months (...) later it readily came to mind when I was looking for an effective way to illustrate the politics of interpretation. With just the right touch of moral indignation, I offered my literary criticism class this example of militaristic ideology blatantly misreading an antimilitaristic text.“But … the Defense Department is right!” objected the first student to speak. Somewhat amused, I spent the next ten minutes trying, with decreasing amusement, to show this student that the Reagan administration’s reading was clearly, obviously, painfully wrong. I pointed to the text. I cited the traditional interpretation. I noted the class consensus, which supported me. All to no avail. It was at this point that I felt that “theoretical urge”: the overwhelming desire for a hermeneutic account to which I could appeal to prove my student wrong. What I wanted was a general theory of interpretation that could supply rules outlawing my student’s misreading.This little hermeneutic fable introduces the three topics of my essay. One topic is the theoretical moment that concludes the narrative; another is the simple plot, a brief rhetorical exchange; and finally there’s the institutional setting in which the exchange takes place. These three topics preoccupy the sections that follow. Section 1 analyzes the problems resulting from the theoretical urge, the impasse of contemporary critical theory. Section 2 proposes my solution to this impasse, a solution I call rhetorical hermeneutics, which leads in section 3 to a rhetorical version of institutional history. 1. “National Aeronautics and Space Act of 1958,” United States Statutes at Large , vol. 72, pt. 1, sec. 102, p. 426; Robert Cooper, director of the Defense Advanced Research Projects Agency, quoted in Frank Greve, “Pentagon Research Retains Vision of ‘Winning’ N-war,” Miami Herald, 27 Mar. 1983, sec. D, p. 4. Steven Mailloux, associate professor of English at the University of Miami, is the author of Interpretive Conventions: the Reader in the Study of American Fiction. He is currently at work on a book tentatively entitled Rhetorical Power: Politics in American Literature, Criticism, and Theory. His previous contributions to Critical Inquiry are “Stanley Fish’s ‘Interpreting the Variorum’: Advance or Retreat?” and “Truth or Consequences: On Being Against Theory”. (shrink)

Modern weaponry is often too complex for unaided human operation, and is largely or totally controlled by computers. But modern software, particularly artificial intelligence software, exhibits such complexity and inscrutability that there are grave dangers associated with its use in non-benign applications. Recent efforts to make computer systems more accessible to military personnel through natural language processing systems, as proposed in the Strategic Computing Initiative of the Defense Advanced Research Projects Agency, increases rather than decreases the (...) dangers of unpredictable behavior. Defense systems constitute, in fact, a paradigm case of the wrong kind of application for this technology. This cannot be expected to change, since the unpredictability stems from inherent properties of computer systems and of natural languages. (shrink)

The Internet, as it exists today, is an outgrowth of the late 1960’s Advanced Research Projects Agency Network. During the 1980’s, the National Science Foundation established a high-speed, high-capacity network called NSFnet connecting many universities and government agencies. Finally, with the creation of the World Wide Web and the development and diffusion of inexpensive, reliable and easy to use public Internet access, electronic information technologies connect an increasingly large portion of the population. As a result, the (...) communities with which we are all familiar, communities based on geographic proximity, have changed. These sorts of changes raise many interesting but difficult questions. This paper focuses on two of those questions. First, what does the increasing use of and reliance on electronically mediated communications portend for our understanding of human communities, and second, what sorts of socio-political concepts and relationships best characterize the new “virtual community”? (shrink)

The Internet, as it exists today, is an outgrowth of the late 1960’s Advanced Research Projects Agency Network. During the 1980’s, the National Science Foundation established a high-speed, high-capacity network called NSFnet connecting many universities and government agencies. Finally, with the creation of the World Wide Web and the development and diffusion of inexpensive, reliable and easy to use public Internet access, electronic information technologies connect an increasingly large portion of the population. As a result, the (...) communities with which we are all familiar, communities based on geographic proximity, have changed. These sorts of changes raise many interesting but difficult questions. This paper focuses on two of those questions. First, what does the increasing use of and reliance on electronically mediated communications portend for our understanding of human communities, and second, what sorts of socio-political concepts and relationships best characterize the new “virtual community”? (shrink)

Palliative care seeks to improve the quality of life for patients suffering from the impact of life‐limiting illnesses. Palliative care encompasses but is more than end‐of‐life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non‐specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports on an action research project aimed at developing respiratory (...) nursing practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non‐specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end‐of‐life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care. (shrink)

With advances in research environments and the accompanying increase in the complexity of research projects, the range of skills required to carry out research calls for an increase in interdisciplinary and collaborative work. CogNovo, a doctoral training program for 25 PhD students, provided a unique opportunity to observe and analyze collaborative processes. We propose a process-oriented framework for understanding research collaborations along two dimensions: interpersonal and project-related. To illustrate the utility of this process-oriented framework, we (...) apply the framework matrix to several collaborations that emerged within the CogNovo program. The framework that we introduce has several advantages over existing metrics. Firstly, we offer a process-oriented—as opposed to product-oriented—evaluation of interdisciplinary and collaborative endeavors. Secondly, we propose a means of assessment that preserves the distinctive profile (or “fingerprint”) of a given collaborative project, thus capturing the uniqueness of each project and its environment. (shrink)

BackgroundInformed consent forms for clinical research are several and variable at international, national and local levels. According to the literature, they are often unclear and poorly understood by participants. Within the H2020 project CORBEL—Coordinated Research Infrastructures Building Enduring Life-science Services—clinical researchers, researchers in ethical, social, and legal issues, experts in planning and management of clinical studies, clinicians, researchers in citizen involvement and public engagement worked together to provide a minimum set of requirements for informed consent in clinical studies.MethodsThe (...) template was based on a literature review including systematic reviews and guidelines searched on PubMed, Embase, Cochrane Library, NICE, SIGN, GIN, and Clearinghouse databases, and on comparison of templates gathered through an extensive search on the websites of research institutes, national and international agencies, and international initiatives. We discussed the draft versions step-by-step and then we referred to it as the “matrix” to underline its modular character and indicate that it allows adaptation to the context in which it will be used. The matrix was revised by representatives of two international patient groups.ResultsThe matrix covers the process of ensuring that the appropriate information, context and setting are provided so that the participant can give truly informed consent. It addresses the key topics and proposes wording on how to clarify the meaning of placebo and of non-inferiority studies, the importance of individual participants’ data sharing, and the impossibility of knowing in advance how the data might be used in future studies. Finally, it presents general suggestions on wording, format, and length of the information sheet.ConclusionsThe matrix underlines the importance of improving the process of communication, its proper conditions (space, time, setting), and addresses the participants’ lack of knowledge on how clinical research is conducted. It can be easily applied to a specific setting and could be a useful tool to identify the appropriate informed consent format for any study. The matrix is mainly intended to support multicentre interventional randomized clinical studies, but several suggestions also apply to non-interventional research. (shrink)

Introducción: Alude a que la salud pública tiene causas multifactoriales con alta connotación social. Objetivo: presentar una estrategia de superación transdisciplinaria para la actualización teórico-metodológica de los profesionales de la salud. Método: se determinaron los fundamentos teóricos de diferentes enfoques y tendencias en gestión de proyectos de investigación. Se concibió una estrategia de superación basada en los principios y conceptos de los estudios de la complejidad, la metodología de la Teoría de la Red de Actores, las ideas de la dirección (...) organizacional y de las premisas de la perspectiva transdisciplinaria. Resultados: se presenta una estrategia educativa para incrementar la capacidad de adaptarse a cambios, de generar conocimientos y de aumentar el desempeño integral que supone cualidades como son: la creatividad, el tratamiento de los valores y el trabajo en equipo. La estrategia contiene cursos de posgrado, pregrado y emergentes, adiestramientos, asesorías, talleres, la participación en eventos y la producción de publicaciones. Conclusiones: se aplicaron los principios y conceptos de los estudios de la complejidad, la metodología de la Teoría de la Red de Actores, las nuevas ideas de la dirección organizacional, así como las premisas de la perspectiva transdisciplinaria para elaborar una estrategia dirigida a la actualización epistemológica de los profesionales de la salud en la gestión de proyectos de investigación. La estrategia y sus interconexiones con los diversos factores para lograr una transformación, aprovecha la coordinación global no dirigida ni controlada por ningún subsistema de la que emergen propiedades nuevas, que garantizan su identidad, estructura, funcionamiento, sinergia y robustez. Introduction: Public health has multifactorial causes of high social connotation. Objective: The objective of this work is to present a strategy for transdisciplinary theoretical and methodological advancement of health professionals. Method: Theoretical foundations of various approaches and trends in research project management were determined. An advancement strategy was conceived based on the principles and concepts of the Complexity Theory, the methodology of the Actor-Network Theory, the ideas of the Organizational Development Theory and the premises of the transdisciplinary approach. Results: A resulting educational strategy is presented to increase the capacity of public health professionals to adapt to changes, to generate knowledge within the field and to increase overall performance in the workplace. This advancement strategy assumes qualities such as: creativity, ethical values and teamwork. The strategy includes postgraduate and undergraduate courses, as well as courses on emerging topics, training and consulting activities, workshops, participation in scientific events and publishing. Conclusions: The principles and concepts of the Complexity Theory, the Actor-Network Theory methodology, the ideas of the Organizational Development Theory, as well as the premises of the transdisciplinary perspective were considered to elaborate a strategy aimed at the epistemological advancement of public health professionals as it relates to the management of research projects. The strategy and its interconnections with the various factors that lead to transformation take advantage of the global coordination neither directed nor controlled by any subsystem from which new properties emerge, guaranteeing their identity, structure, functioning, synergy and strength. (shrink)

The success of the Human Genome Project has prompted interest in advancing the nascent field of exposomics. The exposome, which is dynamic and variable and changes over time, consists of all the internal and external exposures an individual has over a lifetime beginning with the prenatal period and early childhood. Efforts are underway to decipher the human epigenome by identifying the effects of all deleterious environmental exposures according to duration of exposure and time period. In this article, we argue that (...) the deciphering of the human exposome should be accompanied by sustained efforts to address the ethical, social and legal implications (ELSI) of exposomics. This will require financial investments from the National Institutes of Health (NIH), the European Union and other public and private funding agencies, analogous to support provided by NIH to address ELSI issues in genomics. (shrink)

Teams are considered to be extremely complex dynamic entities that suffer at the hand of constant evolution of their structure to meet and adapt to the varying situational demands they come face-to-face with (Kozlowski & Ilgen, 2006). Agencies, industries, and government institutions are currently placing greater attention to the adaption of team dynamics and teamwork as they are important to key organizational outcomes. As greater attention is being placed on the maturation of team dynamics, the incorporation of efficient methodological tools (...) to understand how teams are being measured over time becomes critical. Thus, the purpose of this paper is to present a review of relevant academic articles detailing the science behind methodological tools and general approaches to study team dynamics over time. We provide an overview of the methodological tools used to understand team dynamics with accordance to specific temporal elements. Drawing from Kozloski, Gully, Nason, and Smith (1999) process model of team development, we highlight relevant emergent team constructs within each stage. As well, for each stage, we discuss the what and how to measure team dynamics. Our analyses bring to light relevant, novel and complex approaches being used by researchers to examine specific constructs within different team developmental phases (e.g., agent-based simulations, computational modeling) and the importance of transitioning from a single source methodology approach. Implications and future research are also discussed. (shrink)

Despite advances in theory, often driven by feminist ethicists, research ethics struggles in practice to adequately account for and respond to the agency and autonomy of people considered vulnerable in the research context. We argue that shifts within feminist research ethics scholarship to better characterise and respond to autonomy and agency can be bolstered by further grounding in discourses from the social sciences, in work that confirms the complex nature of human agency in contexts (...) of structural and other sources of vulnerability. We discuss some of the core concepts and critiques emerging from the literature on women and children's agency in under‐resourced settings, highlighting calls to move from individualistic to relational models of agency, and to recognise the ambiguous, value‐laden, and heterogeneous nature of the concept. We then draw out what these conceptual shifts might mean for research ethics obligations and guidance, illustrating our analysis using a case vignette based on research ethics work conducted in South Africa. We conclude that if research practices are to be supportive of agency, it will be crucial to scrutinise the moral judgements which underpin accounts of agency, derive more situated definitions of and responses to agency, and enable people and participants to influence these based on their own experiences and self‐perceptions. (shrink)

This book provides a framework for approaching ethical and policy dilemmas in research with human subjects from the perspective of trust. It explains how trust is important not only between investigators and subjects but also between and among other stakeholders involved in the research enterprise, including research staff, sponsors, institutions, communities, oversight committees, government agencies, and the general public. The book argues that trust should be viewed as a distinct ethical principle for research with human subjects (...) that complements other principles, such as autonomy, beneficence, non-maleficence, and justice. The book applies the principle of trust to numerous issues, including informed consent, confidentiality, risk minimization, risks and benefits, protection of vulnerable subjects, experimental design, research integrity, and research oversight.This work also includes discussions of the history of research involving human subjects, moral theories and principles, contemporary cases, and proposed regulatory reforms. The book is useful for undergraduate and graduate students studying ethical policy issues related to research with human subjects, as well as for scientists and scholars who are interested in thinking about this topic from the perspective of trust. (shrink)

BackgroundThe UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer’s disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving (...) understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the ‘spatial intervention study’ of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. MethodsPeople with a suspected or confirmed diagnosis of dementia in Alzheimer’s disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed.DiscussionThe results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice.Trial registration: DRKS00030799. (shrink)

The proliferation of digital data and internet-based research technologies is transforming the research landscape, and researchers and research ethics communities are struggling to respond to the ethical issues being raised. This paper discusses the findings from a collaborative project that explored emerging ethical issues associated with the expanding use of digital data for research. The project involved consulting with researchers from a broad range of disciplinary fields. These discussions identified five key sets of issues and informed (...) the development of guidelines orientated to meet the needs of researchers and ethics committee members. We argue that establishing common approaches to assessing ethical risks of research involving digital data will promote consistency in the ethical standards for research, enable the smooth functioning of ethics committees, and sustain public confidence in research. We conclude with recommendations for the development of educational resources for ethics committees, data management guidelines and further public education. (shrink)

Little research has explored the possible effects of government institutions in emerging economies on ethical reviews of multinational research. We conducted semi-structured, in-depth telephone interviews with 15 researchers, Research Ethics Committees personnel, and a government agency member involved in multinational HIV Prevention Trials Network research in emerging economies. Ministries of Health or other government agencies often play pivotal roles as facilitators or barriers in the research ethics approval process. Government agency RECs reviewing protocols (...) may face particular challenges, as they can lack resources, be poorly organized, have inconsistent review processes and limited expertise, and use differing definitions of national interests, including upholding national reputation and avoiding potential exploitation and stigma of the country's population. The MOH/governmental review body may be affected by power dynamics and politics in study reviews; may consider issues both related and unrelated to research ethics as understood elsewhere; and may prioritize particular diseases, treatments, or interventions over other topics/types of research. Poor communication and deeply-rooted tensions may exist between sponsor and host countries, impeding optimal interactions and reviews. Investigators must understand and plan for the potential effects of governmental agencies on multinational collaborative research, including preserving adequate time for agency review, and contacting these agencies beforehand to address issues that may arise. Better understanding of these issues can aid and advance appropriate global scientific collaboration. (shrink)

Peer review is a topic of considerable concern to many researchers, and there is a correspondingly large body of research on the topic. This issue of Science and Engineering Ethics presents recent work on peer review that is both grounded in empirical science and is applicable to policy decisions. This research raises two basic questions; (a) how does current peer review operate, and (b) how can it be improved? Topics addressed include descriptions of how peer review is used (...) in Federal agencies. whether peer review leads to better manuscripts, demographic characteristics of authors or reviewers (status or institutional affiliation), blinding of reviewers, authors, or results, reliability and consistency of reviews, accepting a paper before the study is done, simultaneous submission, and use of dispute resolution procedures such as scientific dialectical and pleading protocols. (shrink)

Ethics and ethical behaviour are the fundamental pillars of a civilised society. The focus on ethical behaviour is indispensable in certain fields such as medicine, finance, or law. In fact, ethics gets precedence with anything that would include, affect, transform, or influence upon individuals, communities or any living creatures. Many institutions within Europe have set up their own committees to focus on or approve activities that have ethical impact. In contrast, lesser-developed countries are trying to set up these committees to (...) govern their academia and research. As the first European consortium established to assist academic integrity, European Network for Academic Integrity, we felt the importance of guiding those institutions and communities that are trying to conduct research with ethical principles. We have established an ethical advisory working group within ENAI with the aim to promote ethics within curriculum, research and institutional policies. We are constantly researching available data on this subject and committed to help the academia to convey and conduct ethical behaviour. Upon preliminary review and discussion, the group found a disparity in understanding, practice and teaching approaches to ethical applications of research projects among peers. Therefore, this short paper preliminarily aims to critically review the available information on ethics, the history behind establishing ethical principles and its international guidelines to govern research.The paper is based on the workshop conducted in the 5th International conference Plagiarism across Europe and Beyond, in Mykolas Romeris University, Lithuania in 2019. During the workshop, we have detailed a) basic needs of an ethical committee within an institution; b) a typical ethical approval process ; and c) the ways to obtain informed consent with some examples. These are summarised in this paper with some example comparisons of ethical approval processes from different universities. We believe this paper will provide guidelines on preparing and training both researchers and research students in appropriately upholding ethical practices through ethical approval processes. (shrink)

As evidenced by high-throughput sequencers, genomic technologies have recently undergone radical advances. These technologies enable comprehensive sequencing of personal genomes considerably more efficiently and less expensively than heretofore. These developments present a challenge to the conventional framework of biomedical ethics; under these changing circumstances, each research project has to develop a pragmatic research policy. Based on the experience with a new large-scale project—the Genome Science Project—this article presents a novel approach to conducting a specific policy for personal genome (...) research in the Japanese context. In creating an original informed-consent form template for the project, we present a two-tiered process: making the draft of the template following an analysis of national and international policies; refining the draft template in conjunction with genome project researchers for practical application. Through practical use of the template, we have gained valuable experience in addressing challenges in the ethical review process, such as the importance of sharing details of the latest developments in genomics with members of research ethics committees. We discuss certain limitations of the conventional concept of informed consent and its governance system and suggest the potential of an alternative process using information technology. (shrink)

This study derives an improved model of managers' decision-making behavior regarding possibly failing projects. Instead of adopting cognitive moral development used by Rutledge and Karim (Accounting, Organization and Society 24, 173-184, 1999) this investigation uses the agency theory framework to consider individual moral philosophy for the improvement of decisions regarding possibly failing projects. This research hypothesizes that a manager with low relativism has a stronger tendency to discontinue a possibly failing project than one with high relativism (...) when agency problem are present or absent. Also, this study suggests that a manager with high idealism has a stronger tendency to discontinue a possibly failing project than one with low idealism. Through experiments this work finds that agency problem is a significant factor on decisions regarding possibly failing projects in all circumstances. This result is consistent with prior literature and shows agency problem universality. Next, the empirical evidence supports the hypothesis that a project manager with low relativism tends to discontinue a possibly failing project more than one with high relativism, showing that individual moral philosophy can partially mitigate the phenomenon of escalating managers' commitment. (shrink)

This paper describes the Gender Equity Project at Hunter College of the City University of New York, funded by the U. S. NSF ADVANCE Institutional Transformation Award program. ADVANCE supports system-level strategies to promote gender equity in the social and natural sciences, but has supported very few teaching-intensive institutions. Hunter College is a teaching-intensive institution in which research productivity among faculty is highly valued and counts toward tenure and promotion. We created the GEP to address the particular challenges that (...) faculty, especially White women and faculty of color, face in maintaining research programs and advancing in their careers at teaching-intensive institutions. During the course of the ADVANCE award, its centerpiece was the Sponsorship Program, a multifaceted paid mentorship/sponsorship program that paired each participant with a successful scholar in her discipline. It offered extensive professional development opportunities, including interactive workshops and internal grants to support research. The GEP helped change key policies and practices by ensuring that all faculty were treated fairly in areas like provision of research start-up funds and access to guidance on how to prepare for tenure and promotion. Qualitative and quantitative evidence suggests that participation in the Sponsorship Program boosted research productivity and advanced the careers of many of the women who participated; the Program was highly rated by all participants. Some of the policy and practice changes that the GEP helped bring about were sustained at Hunter beyond the award period and some were adopted and disseminated by the central office of CUNY. However, we were not able to sustain the relatively expensive Sponsorship Program. We share the lessons we learned, including that creating a diverse, successful social and natural scientific workforce requires sustained support of female faculty employed at teaching-intensive colleges. We acknowledge the difficulties of sustaining gains, and offer ideas about how to make the case for gender equity when women seem to be doing “well enough.” We underscore the imperative of building support for women’s research in teaching-intensive institutions, where most women scientists are employed, and well over 90% of all college students—a disproportionate percentage of whom are female, minoritized, or both—are educated. (shrink)

This study derives an improved model of managers’ decision-making behavior regarding possibly failing projects. Instead of adopting cognitive moral development used by Rutledge and Karim this investigation uses the agency theory framework to consider individual moral philosophy for the improvement of decisions regarding possibly failing projects. This research hypothesizes that a manager with low relativism has a stronger tendency to discontinue a possibly failing project than one with high relativism when agency problem are present or (...) absent. Also, this study suggests that a manager with high idealism has a stronger tendency to discontinue a possibly failing project than one with low idealism. Through experiments this work finds that agency problem is a significant factor on decisions regarding possibly failing projects in all circumstances. This result is consistent with prior literature and shows agency problem universality. Next, the empirical evidence supports the hypothesis that a project manager with low relativism tends to discontinue a possibly failing project more than one with high relativism, showing that individual moral philosophy can partially mitigate the phenomenon of escalating managers’ commitment. (shrink)

In the Museum of Science and Technology in San Jose, California, there is a display dedicated to advances in biotechnology. Most prominent in the display is a double helix of telephone books stacked in two staggered spirals from the floor to the ceiling twenty-five feet above. The books are said to represent the current state of our knowledge of the eukaryotic genome: the primary sequences of DNA polynucleotides for the gene products which have been discovered so far in the twenty (...) years since cloning and sequencing the genome became possible. (shrink)

In order to exchange knowledge, humans need to share a common lexicon of words as well as to access the world models underlying that lexicon. What is a natural process for a human turns out to be an extremely hard task for a machine: computers can’t represent knowledge as effectively as humans do, which hampers, for example, meaning disambiguation and communication. Applied ontologies and NLP have been developed to face these challenges. Integrating ontologies with (possibly multilingual) lexical resources is an (...) essential requirement to make human language understandable by machines, and also to enable interoperability and computability across information systems and, ultimately, in the Web. This book explores recent advances in the integration of ontologies and lexical resources, including questions such as building the required infrastructure (e.g., the Semantic Web) and different formalisms, methods and platforms for eliciting, analyzing and encoding knowledge contents (e.g., multimedia, emotions, events, etc.). The contributors look towards next-generation technologies, shifting the focus from the state of the art to the future of Ontologies and Lexical Resources. This work will be of interest to research scientists, graduate students, and professionals in the fields of knowledge engineering, computational linguistics, and semantic technologies. (shrink)

In the Museum of Science and Technology in San Jose, California, there is a display dedicated to advances in biotechnology. Most prominent in the display is a double helix of telephone books stacked in two staggered spirals from the floor to the ceiling twenty-five feet above. The books are said to represent the current state of our knowledge of the eukaryotic genome: the primary sequences of DNA polynucleotides for the gene products which have been discovered so far in the twenty (...) years since cloning and sequencing the genome became possible. (shrink)

Achieving equity in international research is one of the pressing concerns of the twenty-first century. In this era of progressive globalization, there are many opportunities for the deliberate or accidental export of unethical research practices from high-income regions to low- and middle-income countries and emerging economies. The export of unethical practices, termed “ethics dumping,” may occur through all forms of research and can affect individuals, communities, countries, animals, and the environment. Ethics dumping may be the result of (...) purposeful exploitation but often arises from lack of awareness of good ethical and governance practice. This chapter describes the work of the TRUST project toward counteracting the practice of ethics dumping through the development of tools for the improvement of research governance structures. Multi-stakeholder consultation informs all of TRUST’s developments. Most importantly, this gives voice to marginalized vulnerable groups and indigenous people, who have been equal and active partners throughout the project. At the heart of the TRUST project is an ambitious aim to develop a Global Code of Conduct for Research in Resource-Poor Settings. Uniquely, the Code provides guidance across all research disciplines in clear, short statements, focusing on research collaborations that entail considerable imbalances of power, resources and knowledge and using a new framework based on the values of fairness, respect, care, and honesty. The code was recently adopted by the European Commission as a reference document for Horizon 2020 and Horizon Europe. (shrink)

This Article offers an integrated analysis of the combined effect of the presence of migration bans and the absence of BLAs in domestic work in the emigration regime of Nepal. It identifies, acknowledges, critiques, and contributes to the critical literature highlighting entrapment processes in labor relations and immigration regimes by demonstrating the presence of such in the emigration regime. Drawing on the empirical findings of a participatory action research project conducted in Nepal, the Article demonstrates how restrictive emigration policies (...) and practices entail entrapment processes constitutive of the existing historical, cultural, gendered, racialized, and classed constraints impacting the lives of Nepalese citizens. The Article contributes to the critical literature that seeks to advance migrants’ rights, arguing that experiencing, encountering and escaping entrapment processes in the emigration regime impacts their agency when navigating immigration regimes and labor relations. This contribution advances the existing efforts to establish oft-ignored emigration regimes as important epistemological sites of research, theorization, and intervention. (shrink)

Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and middle‐income country (LMIC) community (...) members in global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs. (shrink)

Nurse practitioners (NPs), as advanced practice nurses, have evolved over the years to become recognized as an important and growing trend in Canada and worldwide. In spite of sound evidence as to the effectiveness ofNPs in primary care and other care settings, role implementation and integration continue to pose significant challenges. This article utilizes postcolonial theory, as articulated by Homi Bhabha, to examine and challenge traditional ideologies and structures that have shaped the development, implementation and integration of theNProle to (...) this day. Specifically, we utilize Bhabha's concepts of third space, hybridity, identity and agency in order to further conceptualize the nurse practitioner role, to examine how the role challenges some of the inherent assumptions within the healthcare system and to explore how development of each to these concepts may prove useful in integration of nurse practitioners within the healthcare system. Our analysis casts light on the importance of a broader, power structure analysis and illustrates how colonial assumptions operating within our current healthcare system entrench, expand and re‐invent, as well as mask the structures and practices that serve to impede nurse practitioner full integration and contributions. Suggestions are made for future analysis and research. (shrink)

Bringing together recent case studies and insights into current developments, this collection introduces philosophers to a range of experimental methods from neuroscience. Chapters provide a comprehensive survey of the discipline, covering neuroimaging such as EEG and MRI, causal interventions like brain stimulation, advanced statistical methods, and approaches drawing on research into the development of human individuals and humankind. -/- A team of experts combine clear explanations of complex methods with reports of cutting-edge research, advancing our understanding of (...) how these tools can be applied to further philosophical inquiries into agency, emotions, enhancement, perception, personhood and more. With contributions organised by neuroscientific method, this volume provides an accessible overview for students and scholars coming to neurophilosophy for the first time, presenting a range of topics from responsibility to metacognition. (shrink)

As corporations are going global, they are increasingly confronted with human rights challenges. As such, new ways to deal with human rights challenges in corporate operations must be developed as traditional governance mechanisms are not always able to tackle them. This article presents five different views on innovative solutions for the relationships between business and human rights that all build on empowerment, dialogue and constructive engagement. The different approaches highlight an emerging trend toward a more active role for corporations in (...) the protection of human rights. The first examines the need for enhanced dialogue between corporations and their stakeholders. The next three each examine a different facet of empowerment, a critical factor for the respect and protection of human rights: empowerment of the poor, of communities, and of consumers. The final one presents a case study of constructive corporate engagement in Myanmar (Burma). Altogether, these research projects provide insight into the complex relationships between corporate operations and human rights, by highlighting the importance of stakeholder dialogue and empowerment. All the five projects were presented during the Second Swiss Master Class in Corporate Social Responsibility, held in Lausanne, Switzerland on December 12, 2008. The audience for this conference, which examined business and human rights, was composed of researchers, governmental representatives, and business and non-governmental organization practitioners. (shrink)

The origins of research projects, the duties of supervisors and research workers, the subjective elements in research and the difficulties of publication are reviewed, as a guide to the complexities of executing an honest research project. It is assumed that research carried out with maximal intellectual integrity will result in real advances.

As corporations are going global, they are increasingly confronted with human rights challenges. As such, new ways to deal with human rights challenges in corporate operations must be developed as traditional governance mechanisms are not always able to tackle them. This article presents five different views on innovative solutions for the relationships between business and human rights that all build on empowerment, dialogue and constructive engagement. The different approaches highlight an emerging trend toward a more active role for corporations in (...) the protection of human rights. The first examines the need for enhanced dialogue between corporations and their stakeholders. The next three each examine a different facet of empowerment, a critical factor for the respect and protection of human rights: empowerment of the poor, of communities, and of consumers. The final one presents a case study of constructive corporate engagement in Myanmar (Burma). Altogether, these research projects provide insight into the complex relationships between corporate operations and human rights, by highlighting the importance of stakeholder dialogue and empowerment. All the five projects were presented during the Second Swiss Master Class in Corporate Social Responsibility, held in Lausanne, Switzerland on December 12, 2008. The audience for this conference, which examined business and human rights, was composed of researchers, governmental representatives, and business and non-governmental organization practitioners. (shrink)

Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with (...) these other practices, we illustrate the moral significance of paying careful heed to where one looks for guidance in responding to ethical questions raised by a novel endeavor. (shrink)

Count Me In (CMI) was launched in 2015 as a patient-driven research initiative aimed at accelerating the study of cancer genomics through direct participant engagement, electronic consent and open-access data sharing. It is an example of a large-scale direct-to-patient (DTP) research project which has since enrolled thousands of individuals. Within the broad scope of ‘citizen science’, DTP genomics research is defined here as a specific form of ‘top-down’ research endeavour developed and overseen by institutions within the (...) traditional human subjects research context; in novel ways, it engages and recruits patients with defined diseases, consents them for medical information and biospecimens sharing, and stores and disseminates genomic information. Importantly, these projects simultaneously aim to empower participants in the research process while increasing sample size, particularly in rare disease states. Using CMI as a case study, this paper discusses how DTP genomics research raises new questions in the context of traditional human subjects research ethics, including issues surrounding participant selection, remote consent, privacy and return of results. It aims to demonstrate how current research ethics frameworks may be insufficient in this context, and that institutions, institutional review boards and investigators should be aware of these gaps and their role in ensuring the conduct of ethical, novel forms of research together with participants. Ultimately, a broader question is raised of whether the rhetoric of participatory genomics research advocates for an ethic of personal and social duty for contributing to the advancement of generalisable knowledge about health and disease. (shrink)

Research ethics education has taken many forms since federal funding agencies issued regulatory guidance directing those supported by these agencies to complete required training. In the absence of a standard training approach among institutions such as universities, the design and content of courses, workshops, and seminars varies widely. Here we describe a southwestern United States research university program that employed six teaching strategies to assist students in deep learning of ethical principles and behavior. Our purpose was to determine (...) how these strategies impact understanding and empowerment among an interdisciplinary group of graduate students. Results suggested that deep learning design can result in learning that requires students not only to remember and understand key ethics concepts but also to analyze and apply them in a broader ethical domain. Key findings inform design and delivery of future research ethics courses for instructional designers and instructors in higher education. (shrink)

When engaging in community-based research, it is important to consider ethical research practices throughout the project. While current research practices require many investigators to obtain approval from an ethics review board before starting a project, more is required to ensure that ethical principles are applied once the investigations begin and after the investigations are complete. In response to this concern, as expressed by workers at a feminist non-profit during a community placement, we developed a tool to foster (...) both greater ethical and feminist research practice in community-based research. Using feminist theories, methodologies, and concepts such as epistemic justice, epistemic trust, and coauthorship, a tool was developed to support researchers and other collaborators in building relationships of reciprocity. This tool, called the Research Responsibility Agreement (RRA) invites all members of a research project to explicitly reflect on their role in the research, their relationships with other collaborators, their responsibility to contributing meaningfully in the project, and their plans to remain accountable to one another. In doing so, the RRA adds to existing tools that support ethical research by sharing explicit reflections from all collaborators on how to prevent harm and by asking them to reflect on ethical practices beyond the initial stages of the project. The RRA also encourages greater engagement from researchers and collaborators toward building meaningful relationships with each other, and with participants, to work together in advancing social change. As a practical tool that promotes reflection, that builds relationships, and that holds all parties accountable to ethical and feminist research practices, the RRA has the potential to generate impactful change in community-based research projects and beyond. While the RRA is tailored to community-based research, it can be applied widely to any research project and has the potential to revolutionize how research relationships are built across disciplines. (shrink)

Pregnancy presents some interesting challenges for the philosophy of embodied cognition. Mother and fetus are generally considered to be passive during pregnancy, both individually and in their relation. In this paper, we use the enactive operational concepts of autonomy, agency, individuation, and participation to examine the relation between mother and fetus in utero. Based on biological, physiological, and phenomenological research, we explore the emergence of agentive capacities in embryo and fetus, as well as how maternal agency changes (...) as pregnancy advances. We show that qualitatively different kinds of agency have their beginnings already in utero, and to what extent fetal and maternal movement modulate affectivity and individuation in pregnancy. We thus propose that mother and fetus are both agents who participate in pregnancy. Pregnancy then emerges as a relational developmental organization that anchors and holds its developing participants. We end the paper with reflections on ethical implications of this proposal, and suggestions for future research. (shrink)

New Materialisms brings into focus and explains the significance of the innovative materialist critiques that are emerging across the social sciences and humanities. By gathering essays that exemplify the new thinking about matter and processes of materialization, this important collection shows how scholars are reworking older materialist traditions, contemporary theoretical debates, and advances in scientific knowledge to address pressing ethical and political challenges. In the introduction, Diana Coole and Samantha Frost highlight common themes among the distinctive critical projects that (...) comprise the new materialisms. The continuities they discern include a posthumanist conception of matter as lively or exhibiting agency, and a reengagement with both the material realities of everyday life and broader geopolitical and socioeconomic structures. Coole and Frost argue that contemporary economic, environmental, geopolitical, and technological developments demand new accounts of nature, agency, and social and political relationships; modes of inquiry that privilege consciousness and subjectivity are not adequate to the task. New materialist philosophies are needed to do justice to the complexities of twenty-first-century biopolitics and political economy, because they raise fundamental questions about the place of embodied humans in a material world and the ways that we produce, reproduce, and consume our material environment. Contributors Sara Ahmed Jane Bennett Rosi Braidotti Pheng Cheah Rey Chow William E. Connolly Diana Coole Jason Edwards Samantha Frost Elizabeth Grosz Sonia Kruks Melissa A. Orlie. (shrink)

Spirituality is a universal human experience. Within the process of development, the role of spirituality as a developmental asset is understudied in general and especially within majority world contexts. In this article, we frame advances in spirituality research and practice with youth around three pillars: (a) theory, (b) measurement, and (c) research about and evaluations of positive youth development (PYD) programs in low- and middle-income countries. We place PYD programs as associated with dynamic, relational developmental systems (RDS)-based models (...) of human development, describe spirituality and the “Big Three” features of effective PYD programs as aligning to promote thriving, and discuss spirituality as a strength, as a key asset, in the lives of youth. We discuss advances in developmental methods and measures for describing, explaining, and promoting spirituality and PYD and offer a case study that responds to a United States Agency for International Development call for action and evaluations of spirituality within the context of a PYD program in the majority world. Considerations for future research about spirituality and youth development are discussed. (shrink)

Advances in Experimental Philosophy of Free Will and Responsibility brings together leading researchers from psychology and philosophy to present new findings and ideas about human agency and moral responsibility. Their contributions reflect the growth of research in these areas over the past decade and highlight both the ways that philosophy can be relevant to empirical research and how empirical work can be relevant to philosophical investigations. Mixing new empirical work with the meta-philosophical and philosophical upshot of the (...) latest research being done, chapters cover motivated cognition and free will beliefs, folk intuitions about manipulation and agency, mental control in assessments of responsibility, the importance of skilled decision making to free will judgments and the relationship between free will and substance dualism. Blending cutting-edge research from philosophy with methods from psychology, this collection is a compelling example of the value of interdisciplinary approaches, contributing to our understanding of the complex networks of attitudes, beliefs, and judgments that inform how we think about agency and responsibility. (shrink)