BackgroundThe Transparency and Openness Promotion Guidelines describe modular standards that journals can adopt to promote open science. The TOP Factor is a metric to describe the extent to which journals have adopted the TOP Guidelines in their policies. Systematic methods and rating instruments are needed to calculate the TOP Factor. Moreover, implementation of these open science policies depends on journal procedures and practices, for which TOP provides no standards or rating instruments.MethodsWe describe a process for (...) assessing journal policies, procedures, and practices according to the TOP Guidelines. We developed this process as part of the Transparency of Research Underpinning Social Intervention Tiers Initiative to advance open science in the social intervention research ecosystem. We also provide new instruments for rating journal instructions to authors, manuscript submission systems, and published articles according to standards in the TOP Guidelines. In addition, we describe how to determine the TOP Factor score for a journal, calculate reliability of journal ratings, and assess coherence among a journal’s policies, procedures, and practices. As a demonstration of this process, we describe a protocol for studying approximately 345 influential journals that have published research used to inform evidence-based policy.DiscussionThe TRUST Process includes systematic methods and rating instruments for assessing and facilitating implementation of the TOP Guidelines by journals across disciplines. Our study of journals publishing influential social intervention research will provide a comprehensive account of whether these journals have policies, procedures, and practices that are consistent with standards for open science and thereby facilitate the publication of trustworthy findings to inform evidence-based policy. Through this demonstration, we expect to identify ways to refine the TOP Guidelines and the TOP Factor. Refinements could include: improving templates for adoption in journal instructions to authors, manuscript submission systems, and published articles; revising explanatory guidance intended to enhance the use, understanding, and dissemination of the TOP Guidelines; and clarifying the distinctions among different levels of implementation.Research materials are available on the Open Science Framework: https://osf.io/txyr3/. (shrink)

There is an increasing push by journals to ensure that data and products related to published papers are shared as part of a cultural move to promote transparency, reproducibility, and trust in the scientific literature. Yet few journals commit to evaluating their effectiveness in implementing reporting standards aimed at meeting those goals (1, 2). Similarly, though the vast majority of journals endorse peer review as an approach to ensure trust in the literature, few make their peer review data available (...) to evaluate effectiveness toward achieving concrete measures of quality, including consistency and completeness in meeting reporting standards. Remedying these apparent disconnects is critical for closing the gap between guidance recommendations and actual reporting behavior. We see this as a collective action problem requiring leadership and investment by publishers, who can be incentivized through mechanisms that allow them to manage reputational risk and through continued innovation in journal assessment. (shrink)

Institutional Review Boards have substantial power and authority over research with human subjects, and in turn, their decisions have substantial implications for those subjects, investigators, and the public at large. However, there is little transparency about IRB processes and decisions. This article provides the first comprehensive taxonomy of what transparency means for IRBs — answering the questions “to whom, about what, and by what mechanisms?” It also explains why the status quo of nontransparency is problematic, and presents arguments (...) for greater transparency from the perspective of a variety of stakeholders. IRB transparency will make boards more accountable, improve the quality of their decision-making, facilitate consistency in board decisions, permit empirical study of IRBs, promote research efficiency, and advance trust in the research enterprise, among a variety of other benefits. Regulators should promote IRB transparency, IRBs themselves should commit to sharing as much information as they can within the confines of confidentiality requirements, and investigators can endeavor to take matters into their own hands by sharing IRB correspondence and IRB-approved protocols and consent materials. (shrink)

There is an increasing recognition of the need to provide ways for people to raise concerns about suspected wrongdoing by promoting internal policies and procedures which offer proper safeguards to actual and potential whistleblowers. Many organisations in both the public and private sectors now have such measures and these display a wide variety of operating modalities: in-house or outsourced, anonymous/confidential/identified, multi or single tiered, specified or open subject matter, etc. As a result of this development, a number of guidelines (...) and policy documents have been produced by authoritative bodies. This article reviews the following five documents from a management perspective, the first two deal with the principles upon which legislation might be based and the others describing good management practice: the Council of Europe Resolution 1729 (COER); Transparency International ‘Recommended Principles for Whistleblowing Legislation’ (TI); European Union Article 29 Data Protection Working Party Opinion (EUWP); International Chamber of Commerce ‘Guidelines on Whistleblowing’ (ICC); and the British Standards Institute ‘Whistleblowing arrangements Code of Practice 2008 (BSI). (shrink)

Recent proposals to improve public communication about animal-based biomedical research have been narrowly focused on reforming biomedical journal submission guidelines. My suggestion for communication reform is broader in scope reaching beyond the research community to healthcare communicators and ultimately the general public. The suggestion is for researchers to provide journalists and public relations practitioners with concise summaries of their ‘animal use data’. Animal use data is collected by researchers and intended for the public record but is rarely, if ever, (...) given significant media exposure. By providing healthcare communicators with specific details about their animal use, researchers can play a role informing people about a matter of serious public interest and help to promote a more open and publicly accountable animal research culture. (shrink)

Table of contentsI1 Proceedings of the 4th World Conference on Research IntegrityConcurrent Sessions:1. Countries' systems and policies to foster research integrityCS01.1 Second time around: Implementing and embedding a review of responsible conduct of research policy and practice in an Australian research-intensive universitySusan Patricia O'BrienCS01.2 Measures to promote research integrity in a university: the case of an Asian universityDanny Chan, Frederick Leung2. Examples of research integrity education programmes in different countriesCS02.1 Development of a state-run “cyber education program of research ethics” in (...) KoreaEun Jung Ko, Jin Sun Kwak, TaeHwan Gwon, Ji Min Lee, Min-Ho LeeCS02.3 Responsible conduct of research teachers’ training courses in Germany: keeping on drilling through hard boards for more RCR teachersHelga Nolte, Michael Gommel, Gerlinde Sponholz3. The research environment and policies to encourage research integrityCS03.1 Challenges and best practices in research integrity: bridging the gap between policy and practiceYordanka Krastev, Yamini Sandiran, Julia Connell, Nicky SolomonCS03.2 The Slovenian initiative for better research: from national activities to global reflectionsUrsa Opara Krasovec, Renata SribarCS03.3 Organizational climate assessments to support research integrity: background of the Survey of Organizational Research Climate and the experience with its use at Michigan State UniversityBrian C. Martinson, Carol R. Thrush, C.K. Gunsalus4. Expressions of concern and retractionsCS04.1 Proposed guidelines for retraction notices and their disseminationIvan Oransky, Adam MarcusCS04.2 Watching retractions: analysis of process and practice, with data from the Wiley retraction archivesChris Graf, Verity Warne, Edward Wates, Sue JoshuaCS04.3 An exploratory content analysis of Expressions of ConcernMiguel RoigCS04.4 An ethics researcher in the retraction processMichael Mumford5. Funders' role in fostering research integrityCS05.1 The Fonds de Recherche du Québec’s institutional rules on the responsible conduct of research: introspection in the funding agency activitiesMylène Deschênes, Catherine Olivier, Raphaëlle Dupras-LeducCS05.2 U.S. Public Health Service funds in an international setting: research integrity and complianceZoë Hammatt, Raju Tamot, Robin Parker, Cynthia Ricard, Loc Nguyen-Khoa, Sandra TitusCS05.3 Analyzing decision making of funders of public research as a case of information asymmetryKarsten Klint JensenCS05.4 Research integrity management: Empirical investigation of academia versus industrySimon Godecharle, Ben Nemery, Kris Dierickx5A: Education: For whom, how, and what?CS05A.1 Research integrity or responsible conduct of research? What do we aim for?Mickey Gjerris, Maud Marion Laird Eriksen, Jeppe Berggren HoejCS05A.2 Teaching and learning about RCR at the same time: a report on Epigeum’s RCR poll questions and other assessment activitiesNicholas H. SteneckCS05A.4 Minding the gap in research ethics education: strategies to assess and improve research competencies in community health workers/promoteresCamille Nebeker, Michael Kalichman, Elizabeth Mejia Booen, Blanca Azucena Pacheco, Rebeca Espinosa Giacinto, Sheila Castaneda6. Country examples of research reward systems and integrityCS06.1 Improving systems to promote responsible research in the Chinese Academy of SciencesDing Li, Qiong Chen, Guoli Zhu, Zhonghe SunCS06.4 Exploring the perception of research integrity amongst public health researchers in IndiaParthasarathi Ganguly, Barna Ganguly7. Education and guidance on research integrity: country differencesCS07.1 From integrity to unity: how research integrity guidance differs across universities in Europe.Noémie Aubert Bonn, Kris Dierickx, Simon GodecharleCS07.2 Can education and training develop research integrity? The spirit of the UNESCO 1974 recommendation and its updatingDaniele Bourcier, Jacques Bordé, Michèle LeducCS07.3 The education and implementation mechanisms of research ethics in Taiwan's higher education: an experience in Chinese web-based curriculum development for responsible conduct of researchChien Chou, Sophia Jui-An PanCS07.4 Educating principal investigators in Swiss research institutions: present and future perspectivesLouis Xaver Tiefenauer8. Measuring and rewarding research productivityCS08.1 Altimpact: how research integrity underpins research impactDaniel Barr, Paul TaylorCS08.2 Publication incentives: just reward or misdirection of funds?Lyn Margaret HornCS08.3 Why Socrates never charged a fee: factors contributing to challenges for research integrity and publication ethicsDeborah Poff9. Plagiarism and falsification: Behaviour and detectionCS09.1 Personality traits predict attitude towards plagiarism of self and others in biomedicine: plagiarism, yes we can?Martina Mavrinac, Gordana Brumini, Mladen PetrovečkiCS09.2 Investigating the concept of and attitudes toward plagiarism for science teachers in Brazil: any challenges for research integrity and policy?Christiane Coelho Santos, Sonia VasconcelosCS09.3 What have we learnt?: The CrossCheck Service from CrossRefRachael LammeyCS09.4 High p-values as a sign of data fabrication/falsificationChris Hartgerink, Marcel van Assen, Jelte Wicherts10. Codes for research integrity and collaborationsCS10.1 Research integrity in cross-border cooperation: a Nordic exampleHanne Silje HaugeCS10.3 Research integrity, research misconduct, and the National Science Foundation's requirement for the responsible conduct of researchAaron MankaCS10.4 A code of conduct for international scientific cooperation: human rights and research integrity in scientific collaborations with international academic and industry partnersRaffael Iturrizaga11. Countries' efforts to establish mentoring and networksCS11.1 ENRIO : a network facilitating common approaches on research integrity in EuropeNicole FoegerCS11.2 Helping junior investigators develop in a resource-limited country: a mentoring program in PeruA. Roxana Lescano, Claudio Lanata, Gissella Vasquez, Leguia Mariana, Marita Silva, Mathew Kasper, Claudia Montero, Daniel Bausch, Andres G LescanoCS11.3 Netherlands Research Integrity Network: the first six monthsFenneke Blom, Lex BouterCS11.4 A South African framework for research ethics and integrity for researchers, postgraduate students, research managers and administratorsLaetus OK Lategan12. Training and education in research integrity at an early career stageCS12.1 Research integrity in curricula for medical studentsGustavo Fitas ManaiaCS12.2 Team-based learning for training in the responsible conduct of research supports ethical decision-makingWayne T. McCormack, William L. Allen, Shane Connelly, Joshua Crites, Jeffrey Engler, Victoria Freedman, Cynthia W. Garvan, Paul Haidet, Joel Hockensmith, William McElroy, Erik Sander, Rebecca Volpe, Michael F. VerderameCS12.4 Research integrity and career prospects of junior researchersSnezana Krstic13. Systems and research environments in institutionsCS13.1 Implementing systems in research institutions to improve quality and reduce riskLouise HandyCS13.2 Creating an institutional environment that supports research integrityDebra Schaller-DemersCS13.3 Ethics and Integrity Development Grants: a mechanism to foster cultures of ethics and integrityPaul Taylor, Daniel BarrCS13.4 A culture of integrity at KU LeuvenInge Lerouge, Gerard Cielen, Liliane Schoofs14. Peer review and its role in research integrityCS14.1 Peer review research across disciplines: transdomain action in the European Cooperation in Science and Technology “New Frontiers of Peer Review ”Ana Marusic, Flaminio SquazzoniCS14.2 Using blinding to reduce bias in peer reviewDavid VauxCS14.3 How to intensify the role of reviewers to promote research integrityKhalid Al-Wazzan, Ibrahim AlorainyCS14.4 Credit where credit’s due: professionalizing and rewarding the role of peer reviewerChris Graf, Verity Warne15. Research ethics and oversight for research integrity: Does it work?CS15.1 The psychology of decision-making in research ethics governance structures: a theory of bounded rationalityNolan O'Brien, Suzanne Guerin, Philip DoddCS15.2 Investigator irregularities: iniquity, ignorance or incompetence?Frank Wells, Catherine BlewettCS15.3 Academic plagiarismFredric M. Litto16. Research integrity in EuropeCS16.1 Whose responsibility is it anyway?: A comparative analysis of core concepts and practice at European research-intensive universities to identify and develop good practices in research integrityItziar De Lecuona, Erika Löfstrom, Katrien MaesCS16.2 Research integrity guidance in European research universitiesKris Dierickx, Noémie Bonn, Simon GodecharleCS16.3 Research Integrity: processes and initiatives in Science Europe member organisationsTony Peatfield, Olivier Boehme, Science Europe Working Group on Research IntegrityCS16.4 Promoting research integrity in Italy: the experience of the Research Ethics and Bioethics Advisory Committee of the Consiglio Nazionale delle Ricerche Cinzia Caporale, Daniele Fanelli17. Training programs for research integrity at different levels of experience and seniorityCS17.1 Meaningful ways to incorporate research integrity and the responsible conduct of research into undergraduate, graduate, postdoctoral and faculty training programsJohn Carfora, Eric Strauss, William LynnCS17.2 "Recognize, respond, champion": Developing a one-day interactive workshop to increase confidence in research integrity issuesDieter De Bruyn, Bracke Nele, Katrien De Gelder, Stefanie Van der BurghtCS17.4 “Train the trainer” on cultural challenges imposed by international research integrity conversations: lessons from a projectJosé Roberto Lapa e Silva, Sonia M. R. Vasconcelos18. Research and societal responsibilityCS18.1 Promoting the societal responsibility of research as an integral part of research integrityHelene IngierdCS18.2 Social responsibility as an ethical imperative for scientists: research, education and service to societyMark FrankelCS18.3 The intertwined nature of social responsibility and hope in scienceDaniel Vasgird, Stephanie BirdCS18.4 Common barriers that impede our ability to create a culture of trustworthiness in the research communityMark Yarborough19. Publication ethicsCS19.1 The authors' forum: A proposed tool to improve practices of journal editors and promote a responsible research environmentIbrahim Alorainy, Khalid Al-WazzanCS19.2 Quantifying research integrity and its impact with text analyticsHarold GarnerCS19.3 A closer look at authorship and publication ethics of multi- and interdisciplinary teamsLisa Campo-Engelstein, Zubin Master, Elise Smith, David Resnik, Bryn Williams-JonesCS19.4 Invisibility of duplicate publications in biomedicineMario Malicki, Ana Utrobicic, Ana Marusic20. The causes of bad and wasteful research: What can we do?CS20.1 From countries to individuals: unravelling the causes of bias and misconduct with multilevel meta-meta-analysisDaniele Fanelli, John PA IoannidisCS20.2 Reducing research waste by integrating systems of oversight and regulationGerben ter Riet, Tom Walley, Lex Marius BouterCS20.3 What are the determinants of selective reporting?: The example of palliative care for non-cancer conditionsJenny van der Steen, Lex BouterCS20.4 Perceptions of plagiarism, self-plagiarism and redundancy in research: preliminary results from a national survey of Brazilian PhDsSonia Vasconcelos, Martha Sorenson, Francisco Prosdocimi, Hatisaburo Masuda, Edson Watanabe, José Carlos Pinto, Marisa Palácios, José Lapa e Silva, Jacqueline Leta, Adalberto Vieyra, André Pinto, Mauricio Sant’Ana, Rosemary Shinkai21. Are there country-specific elements of misconduct?CS21.1 The battle with plagiarism in Russian science: latest developmentsBoris YudinCS21.2 Researchers between ethics and misconduct: A French survey on social representations of misconduct and ethical standards within the scientific communityEtienne Vergès, Anne-Sophie Brun-Wauthier, Géraldine VialCS21.3 Experience from different ways of dealing with research misconduct and promoting research integrity in some Nordic countriesTorkild VintherCS21.4 Are there specifics in German research misconduct and the ways to cope with it?Volker Bähr, Charité22. Research integrity teaching programmes and their challengesCS22.1 Faculty mentors and research integrityMichael Kalichman, Dena PlemmonsCS22.2 Training the next generation of scientists to use principles of research quality assurance to improve data integrity and reliabilityRebecca Lynn Davies, Katrina LaubeCS22.3 Fostering research integrity in a culturally-diverse environmentCynthia Scheopner, John GallandCS22.4 Towards a standard retraction formHervé Maisonneuve, Evelyne Decullier23. Commercial research and integrityCS23.1 The will to commercialize: matters of concern in the cultural economy of return-on-investment researchBrian NobleCS23.2 Quality in drug discovery data reporting: a mission impossible?Anja Gilis, David J. Gallacher, Tom Lavrijssen, Malwitz David, Malini Dasgupta, Hans MolsCS23.3 Instituting a research integrity policy in the context of semi-private-sector funding: an example in the field of occupational health and safetyPaul-Emile Boileau24. The interface of publication ethics and institutional policiesCS24.1 The open access ethical paradox in an open government effortTony SavardCS24.2 How journals and institutions can work together to promote responsible conductEric MahCS24.3 Improving cooperation between journals and research institutions in research integrity casesElizabeth Wager, Sabine Kleinert25. Reproducibility of research and retractionsCS25.1 Promoting transparency in publications to reduce irreproducibilityVeronique Kiermer, Andrew Hufton, Melanie ClyneCS25.2 Retraction notices issued for publications by Latin American authors: what lessons can we learn?Sonia Vasconcelos, Renan Moritz Almeida, Aldo Fontes-Pereira, Fernanda Catelani, Karina RochaCS25.3 A preliminary report of the findings from the Reproducibility Project: Cancer biologyElizabeth Iorns, William Gunn26. Research integrity and specific country initiativesCS26.1 Promoting research integrity at CNRS, FranceMichèle Leduc, Lucienne LetellierCS26.2 In pursuit of compliance: is the tail wagging the dog?Cornelia MalherbeCS26.3 Newly established research integrity policies and practices: oversight systems of Japanese research universitiesTakehito Kamata27. Responsible conduct of research and country guidelinesCS27.1 Incentives or guidelines? Promoting responsible research communication through economic incentives or ethical guidelines?Vidar EnebakkCS27.3 Responsible conduct of research: a view from CanadaLynn PenrodCS27.4 The Danish Code of Conduct for Research Integrity: a national initiative to promote research integrity in DenmarkThomas Nørgaard, Charlotte Elverdam28. Behaviour, trust and honestyCS28.1 The reasons behind non-ethical behaviour in academiaYves FassinCS28.2 The psychological profile of the dishonest scholarCynthia FekkenCS28.3 Considering the implications of Dan Ariely’s keynote speech at the 3rd World Conference on Research Integrity in MontréalJamal Adam, Melissa S. AndersonCS28.4 Two large surveys on psychologists’ views on peer review and replicationJelte WichertsBrett Buttliere29. Reporting and publication bias and how to overcome itCS29.1 Data sharing: Experience at two open-access general medical journalsTrish GrovesCS29.2 Overcoming publication bias and selective reporting: completing the published recordDaniel ShanahanCS29.3 The EQUATOR Network: promoting responsible reporting of health research studiesIveta Simera, Shona Kirtley, Eleana Villanueva, Caroline Struthers, Angela MacCarthy, Douglas Altman30. The research environment and its implications for integrityCS30.1 Ranking of scientists: the Russian experienceElena GrebenshchikovaCS30.4 From cradle to grave: research integrity, research misconduct and cultural shiftsBronwyn Greene, Ted RohrPARTNER SYMPOSIAPartner Symposium AOrganized by EQUATOR Network, Enhancing the Quality and Transparency of Health ResearchP1 Can we trust the medical research literature?: Poor reporting and its consequencesIveta SimeraP2 What can BioMed Central do to improve published research?Daniel Shanahan, Stephanie HarrimanP3 What can a "traditional" journal do to improve published research?Trish GrovesP4 Promoting good reporting practice for reliable and usable research papers: EQUATOR Network, reporting guidelines and other initiativesCaroline StruthersPartner Symposium COrganized by ENRIO, the European Network of Research Integrity OfficersP5 Transparency and independence in research integrity investigations in EuropeKrista Varantola, Helga Nolte, Ursa Opara, Torkild Vinther, Elizabeth Wager, Thomas NørgaardPartner Symposium DOrganized by IEEE, the Institute of Electrical and Electronics EngineersRe-educating our author community: IEEE's approach to bibliometric manipulation, plagiarism, and other inappropriate practicesP6 Dealing with plagiarism in the connected world: An Institute of Electrical and Electronics Engineers perspectiveJon RokneP7 Should evaluation of raises, promotion, and research proposals be tied to bibliometric indictors? What the Institute of Electrical and Electronics Engineers is doing to answer this questionGianluca SettiP8 Recommended practices to ensure conference content qualityGordon MacPhersonPartner Symposium EOrganized by the Committee on Freedom and Responsibility in the Conduct of Science of ICSU, the International Council for ScienceResearch assessment and quality in science: perspectives from international science and policy organisationsP9 Challenges for science and the problems of assessing researchEllen HazelkornP10 Research assessment and science policy developmentCarthage SmithP11 Research integrity in South Africa: the value of procedures and processes to global positioningRobert H. McLaughlinP12 Rewards, careers and integrity: perspectives of young scientists from around the worldTatiana Duque MartinsPartner Symposium FOrganized by the Online Resource Center for Ethics Education in Engineering and Science / Center for Engineering, Ethics, and Society of the National Academy of EngineeringP13 Research misconduct: conceptions and policy solutionsTetsuya Tanimoto, Nicholas Steneck, Daniele Fanelli, Ragnvald Kalleberg, Tajammul HusseinPartner Symposium HOrganized by ORI, the Office of Research Integrity; Universitas 21; and the Asia Pacific Research Integrity NetworkP14 International integrity networks: working together to ensure research integrityPing Sun, Ovid Tzeng, Krista Varantola, Susan ZimmermanPartner Symposium IOrganized by COPE, the Committee on Publication EthicsPublication without borders: Ethical challenges in a globalized worldP15 Authorship: credit and responsibility, including issues in large and interdisciplinary studiesRosemary ShinkaiPartner Symposium JOrganized by CITI, the Cooperative Institutional Training InitiativeExperiences on research integrity educational programs in Colombia, Costa Rica and PeruP16 Experiences in PeruRoxana LescanoP17 Experiences in Costa RicaElizabeth HeitmanP18 Experiences in ColumbiaMaria Andrea Rocio del Pilar Contreras NietoPoster Session B: Education, training, promotion and policyPT.01 The missing role of journal editors in promoting responsible researchIbrahim Alorainy, Khalid Al-WazzanPT.02 Honorary authorship in Taiwan: why and who should be in charge?Chien Chou, Sophia Jui-An PanPT.03 Authorship and citation manipulation in academic researchEric Fong, Al WilhitePT.04 Open peer review of research submission at medical journals: experience at BMJ Open and The BMJTrish GrovesPT.05 Exercising authorship: claiming rewards, practicing integrityDésirée Motta-RothPT.07 Medical scientists' views on publication culture: a focus group studyJoeri Tijdink, Yvo SmuldersPoster Session B: Education, training, promotion and policyPT.09 Ethical challenges in post-graduate supervisionLaetus OK LateganPT.10 The effects of viable ethics instruction on international studentsMichael Mumford, Logan Steele, Logan Watts, James Johnson, Shane Connelly, Lee WilliamsPT.11 Does language reflect the quality of research?Gerben ter Riet, Sufia Amini, Lotty Hooft, Halil KilicogluPT.12 Integrity complaints as a strategic tool in policy decision conflictsJanneke van Seters, Herman Eijsackers, Fons Voragen, Akke van der Zijpp and Frans BromPoster Session C: Ethics and integrity intersectionsPT.14 Regulations of informed consent: university-supported research processes and pitfalls in implementationBadaruddin Abbasi, Naif Nasser AlmasoudPT.15 A review of equipoise as a requirement in clinical trialsAdri LabuschagnePT.16 The Research Ethics Library: online resource for research ethics educationJohanne Severinsen, Espen EnghPT.17 Research integrity: the view from King Abdulaziz City for Science and TechnologyDaham Ismail AlaniPT. 18 Meeting global challenges in high-impact publications and research integrity: the case of the Malaysian Palm Oil BoardHJ. Kamaruzaman JusoffPT.19 University faculty perceptions of research practices and misconductAnita Gordon, Helen C. HartonPoster Session D: International perspectivesPT.21 The Commission for Scientific Integrity as a response to research fraudDieter De Bruyn, Stefanie Van der BurghtPT. 22 Are notions of the responsible conduct of research associated with compliance with requirements for research on humans in different disciplinary traditions in Brazil?Karina de Albuquerque Rocha, Sonia Maria Ramos de VasconcelosPT.23 Creating an environment that promotes research integrity: an institutional model of Malawi Liverpool Welcome TrustLimbanazo MatandikaPT.24 How do science policies in Brazil influence user-engaged ecological research?Aline Carolina de Oliveira Machado Prata, Mark William NeffPoster Session E: Perspectives on misconductPT.26 What “causes” scientific misconduct?: Testing major hypotheses by comparing corrected and retracted papersDaniele Fanelli, Rodrigo Costas, Vincent LarivièrePT.27 Perception of academic plagiarism among dentistry studentsDouglas Leonardo Gomes Filho, Diego Oliveira GuedesPT. 28 a few bad apples?: Prevalence, patterns and attitudes towards scientific misconduct among doctoral students at a German university hospitalVolker Bähr, Niklas Keller, Markus Feufel, Nikolas OffenhauserPT. 29 Analysis of retraction notices published by BioMed CentralMaria K. Kowalczuk, Elizabeth C. MoylanPT.31 "He did it" doesn't work: data security, incidents and partnersKatie SpeanburgPoster Session F: Views from the disciplinesPT.32 Robust procedures: a key to generating quality results in drug discoveryMalini Dasgupta, Mariusz Lubomirski, Tom Lavrijssen, David Malwitz, David Gallacher, Anja GillisPT.33 Health promotion: criteria for the design and the integrity of a research projectMaria Betânia de Freitas Marques, Laressa Lima Amâncio, Raphaela Dias Fernandes, Oliveira Patrocínio, and Cláudia Maria Correia Borges RechPT.34 Integrity of academic work from the perspective of students graduating in pharmacy: a brief research studyMaria Betânia de Freitas Marques, Cláudia Maria Correia Borges Rech, Adriana Nascimento SousaPT.35 Research integrity promotion in the Epidemiology and Health Services, the journal of the Brazilian Unified Health SystemLeila Posenato GarciaPT.36 When are clinical trials registered? An analysis of prospective versus retrospective registration of clinical trials published in the BioMed Central series, UKStephanie Harriman, Jigisha PatelPT.37 Maximizing welfare while promoting innovation in drug developmentFarida LadaOther posters that will be displayed but not presented orally:PT.38 Geoethics and the debate on research integrity in geosciencesGiuseppe Di Capua, Silvia PeppoloniPT.39 Introducing the Professionalism and Integrity in Research Program James M. DuBois, John Chibnall, Jillon Van der WallPT.40 Validation of the professional decision-making in research measureJames M. DuBois, John Chibnall, Jillon Van der Wall, Raymond TaitPT.41 General guidelines for research ethicsJacob HolenPT. 42 A national forum for research ethicsAdele Flakke Johannessen, Torunn EllefsenPT.43 Evaluation of integrity in coursework: an approach from the perspective of the higher education professorClaudia Rech, Adriana Sousa, Maria Betânia de Freitas MarquesPT.44 Principles of geoethics and research integrity applied to the European Multidisciplinary Seafloor and Water Column Observatory, a large-scale European environmental research infrastructureSilvia Peppoloni, Giuseppe Di Capua, Laura BeranzoliF1 Focus track on improving research systems: the role of fundersPaulo S.L. Beirão, Susan ZimmermanF2 Focus track on improving research systems: the role of countriesSabine Kleinert, Ana MarusicF3 Focus track on improving research systems: the role of institutionsMelissa S. Anderson, Lex Bouter. (shrink)

This article analyzes the use of crowdsourcing to promote corporate sustainability by assessing compliance with supply chain disclosure laws. It draws on a case study of WikiRate.org as a novel example of crowdsourcing compliance with respect to the UK Modern Slavery Act and U.S. conflict minerals legislation (section 1502 of the Dodd-Frank Financial Reform Act). WikiRate is an open research platform whose mission is to crowdsource better companies by motivating corporations to be transparent about their environmental, social, and governance performance. (...) In particular, WikiRate’s projects on modern slavery and conflict minerals harness the power of citizens to evaluate the quality of corporate disclosures produced in accordance with these laws. Following an analysis of its projects on modern slavery and conflict minerals, I evaluate the challenges of using crowdsourcing to assess legal compliance, including the potential manipulation of data and the difficulty of relying on non-expert citizens to assess complex information in corporate disclosures. I argue that one must identify the appropriate “crowd” that would be most capable of assessing compliance with a given law. While crowdsourcing platforms such as WikiRate invite a broad range of stakeholders to assess compliance, the reality is that only a limited set of individuals may be able to meaningfully participate given the complexity of supply chain disclosures. Thus, “expertsourcing” may be a more appropriate tool for assessing compliance with certain laws as it limits participation to citizens with specialized expertise. (shrink)

Low-level community based ethics committees staffed by teachers, parents and community representatives can readily review children’s science fair projects subject to the revision of two core assumptions currently governing children’s Science Fairs. The first part of the paper recasts the New Zealand Royal Society guidelines from its primary emphasis on risk to a new assumption, without benefit there can be no risk. Equally, this revision gives more prominence to the participant information sheet, allowing it to act as a quasi (...) application form which provides ethical transparency between student researchers, participants and a community based ethics committee. A second core assumption, more accurately labeled a cult of originality, produces a random, open-ended array of student topics taking ethics review beyond the confidence level of most community based ethics review committees. This paper reins in Science Fair coordinators recommending they make community level ethics review more manageable by providing a list of preapproved topics for those students wanting to conduct research involving human participants. These revised assumptions create a workable division of labour. Teachers’ preapproved topics involving human participants are more likely to be low risk, permitting community level ethics review to focus primarily on two aspects of the minimization of harm: first, for all participants, especially those with diminished autonomy, and second, for the child researchers themselves, as some participants may be unknown to the student. These revised assumptions make science and ethics more accessible to public education thus demonstrating how Science Fairs can lead students and the community into better understanding the role and function that ethics has in all scientific research human participants. (shrink)

Both scientists and philosophers of science have recently emphasized the importance of promoting transparency in science. For scientists, transparency is a way to promote reproducibility, progress, and trust in research. For philosophers of science, transparency can help address the value-ladenness of scientific research in a responsible way. Nevertheless, the concept of transparency is a complex one. Scientists can be transparent about many different things, for many different reasons, on behalf of many different stakeholders. This paper proposes (...) a taxonomy that clarifies the major dimensions along which approaches to transparency can vary. By doing so, it provides several insights that philosophers and other science studies scholars can pursue. In particular, it helps address common objections to pursuing transparency in science, it clarifies major forms of transparency, and it suggests avenues for further research on this topic. (shrink)

Purpose As Big Data and Artificial Intelligence (AI) proliferate, calls have emerged for ethical reflection. Ethics guidelines have played a central role in this respect. While quantitative research on the ethics guidelines of AI/Big Data has been undertaken, there has been a dearth of systematic qualitative analyses of these documents. Design/methodology/approach Aiming to address this research gap, this paper analyses 70 international ethics guidelines documents from academia, NGOs and the corporate realm, published between 2017 and 2020. Findings (...) The article presents four key findings: existing ethics guidelines (1) promote a broad spectrum of values; (2) focus principally on AI, followed by (Big) Data and algorithms; (3) do not adequately define the term “ethics” and related terms; and (4) have most frequent recourse to the values of “transparency,” “privacy,” and “security.” Based on these findings, the article argues that the guidelines corpus exhibits discernible utilitarian tendencies; guidelines would benefit from greater reflexivity with respect to their ethical framework; and virtue ethical approaches have a valuable contribution to make to the process of guidelines development. Originality/value The paper provides qualitative insights into the ethical discourse surrounding AI guidelines, as well as a concise overview of different types of operative translations of theoretical ethical concepts vis-à-vis the sphere of AI. These may prove beneficial for (applied) ethicists, developers and regulators who understand these guidelines as policy. (shrink)

With the increasing adoption of artificial intelligence (AI) technologies in the news industry, media organizations have begun publishing guidelines that aim to promote the responsible, ethical, and unbiased implementation of AI-based technologies. These guidelines are expected to serve journalists and media workers by establishing best practices and a framework that helps them navigate ever-evolving AI tools. Drawing on institutional theory and digital inequality concepts, this study analyzes 37 AI guidelines for media purposes in 17 countries. Our analysis (...) reveals key thematic areas, such as transparency, accountability, fairness, privacy, and the preservation of journalistic values. Results highlight shared principles and best practices that emerge from these guidelines, including the importance of human oversight, explainability of AI systems, disclosure of automated content, and protection of user data. However, the geographical distribution of these guidelines, highlighting the dominance of Western nations, particularly North America and Europe, can further ongoing concerns about power asymmetries in AI adoption and consequently isomorphism outside these regions. Our results may serve as a resource for news organizations, policymakers, and stakeholders looking to navigate the complex AI development toward creating a more inclusive and equitable digital future for the media industry worldwide. (shrink)

Background Education is a tool for the promotion of ethical skills that ensure the principles of conduct and the quality of care provided. The literature is still incipient in this theme; however, some studies point to education and ethical consultations as strategies to promote an ethical environment. Objective To map the interventions that aim to prospect the ethical environment in health services. Method Scoping review to answer the question “What interventions are being used by health professionals to prospect an (...) ethical environment in health services?” It occurred in the Medline (PubMed), CINAHL with Full Text (EBSCO), Scopus, Embase (Elsevier), and Web of Science databases in January 2023 by two reviewers, via the Rayyan platform. Articles with health professionals addressing interventions to prospect the ethical environment in any health service were included, without time frame. A form was used for data extraction and analysis occurred via Bardin content analysis. The review protocol was registered in the Open Science Framework. Results 2429 records were found; however, only 12 articles were included for analysis, these being randomized, cross-sectional, descriptive, and qualitative studies. Among the interventions, it was noticed that 58.3% ( n = 7) is about ethical education, 16.7% ( n = 2) about ethical guidelines and codes, 16.7% ( n = 2) about ethical reflection and leadership, and 8.3% ( n = 1) of ethical consultations. A theoretical map was elaborated, and four types of interventions were identified, based on ethical consultation, ethical education, guidelines and codes of ethics, reflection, and ethical leadership. Conclusions The interventions were considered effective to prospect the ethical environment in health services, and their effectiveness was evaluated by validated instruments, as well as through interviews and focus groups. (shrink)

Positive Psychology Interventions as an Opportunity in Arab Countries to Promoting Well-being AbstractIn this perspective paper, we emphasize the importance of further research on culturally-sensitive positive psychology interventions in the Arab region. We argue that these interventions are needed in the region because they not only reduce mental health problems but also promote well-being and flourishing. To achieve this, we shed light on the cultural elements of the Arab region and how the concept of well-being differs from that of Western (...) culture. We review the research conducted in Arabia, briefly evaluate the quality of this research and list some adapted measurements. We furthermore propose guidelines and recommendations for future evidence-based positive psychology interventions research to align with the national culture in various sectors and community samples that contribute to the development of well-being in the Arab world.Introduction Extensive research on Positive Psychology Interventions (PPIs) - defined as activities focus on promoting positive feelings, thoughts, or behaviour (Sin & Lyubomirsky, 2009) - has shown their effectiveness in well-being and mental illness (e.g., Chakhssi et al., 2018; Hendriks et al., 2020). A recent review of 347 studies showed that PPIs have a significant effect on promoting quality of life and well-being and reducing anxiety and depression (Carr et al., 2020). However, the issue is that most of these studies (82%) remain narrow in focus only on Western Educated Industrialised Rich Democratic (WEIRD) countries (Hendriks et al., 2019). Therefore, they may not be effective for other countries such as the Arab countries where there are various cultural differences. This highlights the key role that culture can play in enhancing PPIs engagement, acceptability, and eventually, effectiveness (Hendriks & Graafsma, 2019). Recently, the field of PP in the Arab region has begun to grow (Basurrah et al., 2021; Rao et al., 2015). However, studies conducted in these countries are scant and of poor methodological quality. We have found humble quantity and quality of empirical studies. Yet, Arab countries, home to 5% of the world’s population, have a burden of mental health problems above global levels (GBD 2015 Eastern Mediterranean Region Mental Health Collaborators, 2018). Prevalent stigma, war and conflict were some of the contributors (Maalouf et al., 2019). Thus, to properly address this cultural stigma against mental health problems, PPIs could provide an additional role alongside traditional psychology approaches (e.g., Cognitive Behavioural therapy - CBT). Further, in light of the political conditions that some Arab countries are going through and the negative effects that they cause, it has become necessary to use the method of prevention that is the focus of PP and not only of treatment as a strategy for applications and practice. It has been noted that the mental health care system in the Arab region focuses highly on illnesses treatment and neglects the significant role that PP plays in enhancing human potential and well-being. We - here in Arabia –are becoming more influenced by many global issues particularly the COVID-19 pandemic and their impact on mental health and well-being (e. g. prevalence of stress, anxiety, depression among the general population during the pandemic (Salari et al., 2020). In response, Waters et al. (2021) have recently presented how positive psychological factors can play a significant role in buffering mental illness, enhancing mental health throughout the pandemic, and building positive processes and capacities that can help to promote future mental health.Here in this perspective paper, we highlight the cultural aspects of Arab countries. Specifically, we present previous PPIs research conducted in Arabia and briefly evaluate the quality of this research. Importantly, we discuss the need of developing an indigenous and culturally sensitive PP among the Arab region (Lambert et al., 2015).Arab Culture “Arab World,” which comprises 5% of the world’s population, refers to the Arab countries in the Middle East and North Africa. Despite the increasing pace and progress of different businesses in many Arab countries, individual communities are still limited in certain prominent economic places. Arab people rather gather in collective communities. They generally share the same Arabic Islamic culture, speak the same language, and descend from the same Arab families when going back in history no matter what nationality they have nowadays. Yet, very many changes came to communities before borders were drawn between countries and after. For instance, geography, topography, demography, and socio-economic status affect peoples’ nature of jobs and lifestyles. For example, Arabs in the east, west, or the middle have similar tongues; however, almost every Arab country has its accent. Therefore, people need to go back to the formal Arabic language ‘Fus-ha’ or learn more about different Arabic dialects when communicating cross-countries. According to Hofstede’s model (2011) based on the individualism-collectivism dimension, the Arab countries (Eastern society) have been classified as a collectivist culture, where their identity and decisions are influenced by social systems. In contrast, the United States (Western society) has been classified as an individualist culture focusing on individual decisions. Although there are degrees of individualism among Arabs in certain countries, they still share collective common characteristics. Here, we explore the meaning of collectivistic conceptions of the self, emotions, values, and religion in Arab countries and how they differ from those in individual Western cultures. The Self Since the field of PP focuses on the development of self, it is vital to recognize that self-concept varies across cultures. Individualism generally emphasises the self-directed and autonomous individual (Realo et al., 2002). People in individualist countries focus primarily on their personal characteristics (e.g., motives, abilities) to build their self-concept. On the other hand, collectivism refers to several social structures that highly value the groups to which people belong, such as family and tribe (Realo, 2003). People in collectivist countries such as the Arab countries focus primarily on their relationships with others to build their self-concept (Markus & Kitayama, 1991). Hence, research from Arab countries should focus on the core elements of collectivism when implementing PPIs to make a significant, meaningful impact. For example, people from a collective culture may experience a greater enhancement in well-being when practising interventions that are more prosocial and group-oriented such as compassion, performing acts of kindness, writing a gratitude letter, and using character strengths in everyday context including social context, compared with self-oriented interventions such as identifying character strengths. Emotions, value, and Religion Research shows that Western culture emphasises the goal of maximizing positive emotions, while Eastern culture emphasises embracing and balancing positive and negative emotions (Leu et al., 2011). To illustrate, culture plays an important role in influencing perceptions of happiness. People in individualist countries value happiness highly. In contrast, people from the collective countries value low arousal positive emotions (Leu et al., 2011) and exhibit a fear of happiness (Joshanloo & Weijers, 2014; Joshanloo, 2013). Hence, the influence of positive emotions plays a limited role in the mental health of Eastern society. Speaking of Value, for an Arab, the family is the centre of honour and the most important social unit. This loyalty has an impact on every part of an Arab’s life. Arabs honour their families and highly value their friendships. Therefore, future research could shed more light on group-oriented interventions (e.g., kindness) that focus more on the relationship with family, friends, and community. When it comes to religion, Arab society has a rich culture in values and believes that place a high emphasis on spirituality. Religion is the most important and distinctive aspect of Arab culture. Arab countries vary in terms of religion, with Islam being the predominant religion in most of them. Well-being (Hedonic and Eudaimonic) It is necessary here to clarify what is meant by hedonic and eudaimonic definitions of well-being. While the term ‘Hedonic’ is based on the pursuit of maximum levels of pleasure (feeling good), the term ‘Eudaimonic’, on the other hand, is based on meaning and the development of virtues (functioning well; Keyes & Annas, 2009). Research indicates that cultures are not equally supportive of hedonic and eudaimonic aspects (Joshanloo & Jarden, 2016). In comparison to collectivism, hedonism appears to be more congruent with individualism (Joshanloo, 2014). Pleasure and positive emotions are considered a way to pursue happiness in Western culture, while this method is not highly favoured in Eastern cultures (Lee et al., 2013); Because they consider suffering and negative emotions as contributing factors to spiritual development. Therefore, the eastern perspective is more in line with a eudaimonistic view which emphasises virtues, meaning, and feeling of belongingness. However, although we believe that both approaches can be found to a certain level in both cultures, the differences suggest that there are different routes to happiness. Positive Psychology in the Arab region Positive psychology - "the scientific study of what makes life most worth living" (Seligman & Csikszentmihalyi, 2000) - is one of the newest branches of psychology. It focuses on three main pillars: (1) positive subjective experiences (such as happiness and love); (2) positive individual characters (such as gratitude and compassion); and (3) positive institutions (for the application of positive principles within institutions and organizations; Seligman & Csikszentmiha lyi, 2000). Some of the main topics of interest in positive psychology include character strengths, gratitude, hope, happiness, mindfulness, optimism, positive thinking, and resilience. Within the applications of this science, various domains of well-being (such as happiness, engagement, positive emotions, and meaning) can be enhanced by practising positive psychology interventions (Sin & Lyubomirsky, 2009). Interestingly, these interventions have also produced benefits beyond well-being, such as reduced mental health issues (Chakhssi et al., 2018; Hendriks et al., 2020).Nowadays, PP is increasingly noticed in the Arab world (Lambert & Pasha-Zaidi, 2019; Rao et al., 2015). In recent years, there has been a great effort to explore the PP field across Arab countries. Several initiatives have emerged aimed at promoting well-being and flourishing. For example, the Middle East Journal of Positive Psychology published its first volume in 2015. On the International Day of Happiness in 2017, United Arab Emirates University launched its Emirates Center for Happiness Research. Meanwhile, Effat University in Saudi Arabia started the first Positive Psychology and Well-being Research Lab, the first symposium, and the first PP course. In 2019, Louise Lambert and Nausheen Pasha-Zaidi published the first regional text entitled “Positive Psychology in the Middle East/North Africa.” There are other efforts spent in the region as well; such as the work conducted in Egypt. Ibrahim Younus established the Arab Association for Positive Psychology https://www.psycholearn.com/en/associative.php which provides several courses on PP and also published a book entitled “The Power of Positive Psychology” (Younus, 2017). Despite this development, nothing can compare to the quantity and even quality of research in other countries. In light of our observations, the few PP studies may be attributed to the lack of awareness of the constructive approach and prevention compared to problem-solving. An Arab dentist once said: “people do not come to me until they are badly in pain.” In any case, many studies have taken place in Arab countries in the last decade, more of which are descriptive and less of which experimental. For example, Abdel-Khalek (2010) found positive correlations between quality of life, subjective well-being, and religiosity among students in Kuwait. Abdel-Khalek (2016) developed “the Arabic Scale of Religiosity,” which significantly correlated with PP variables among students in Algeria, Kuwait, and Egypt. Recently, empirical studies on PPIs have arisen in Arab-Islamic countries. More attention has been focused on promoting well-being and alleviating the high burden of mental health problems in the region (GBD 2015 Eastern Mediterranean Region Mental Health Collaborators, 2018). For instance, several studies examined the effectiveness of mindfulness among university students (e.g., Al-Ghalib & Slim, 2018; Awad, 2019; Thomas et al., 2016), parents of children with autism (Rayan & Ahmed, 2016) and addicted adults (Al-Rashidi, 2018). Such an intervention has positive effects. Participants who practised mindfulness reported reduction in stress and depression as well as improvement in well-being and resilience. Moreover, the results of a recent pilot study found positive impacts on enhancing emotional regulations and reducing stress among Arab teachers (Berkovich-Ohana et al., 2020). Some studies have also begun to examine various interventions targeting character strengths (Basurrah et al., 2020; Chérif et al., 2020), self-compassion (Elaiwah, 2017), positive thinking (Mohammed et al., 2014; Hadad, 2014), and hope (Zaki, 2016). Interestingly, a new finding considering the fear of happiness among people from collective countries has been examined. Lambert et al. (2019) provided evidence that a 14-week PPIs programme has an impact on reducing the fear and fragility of happiness beliefs among university students in the United Arab Emirates.Since Arab countries place great emphasis on spirituality, several authors have considered the aspect of religion when implementing PPIs. For instance, an empirical study by Al-Seheel and Noor (2016) found that expressing gratitude towards God “Allah” increases the happiness of the Muslim more than the usual gratitude intervention. Additionally, Al-Ghalib and Salim (2018) examined a religiously sensitive mindfulness-training programme with university students and found a positive effect on life satisfaction and a slight reduction in stress, depression, and anxiety. Hence, the role of religion is vital to make the interventions more relevant to Arab culture where people can connect Islamic philosophy with PP theories and practices. These studies reviewed here provide further support for the need for culturally sensitive interventions among the Arab population. More recently, the first systematic review of PPIs in Arab countries was conducted by Basurrah et al. (2021; the protocol has been published in BMJ Open and the final manuscript has been submitted for publication). Reviewing a total of 39 studies, the most commonly studied interventions were mindfulness, positive thinking, and resilience. Only a handful of studies examined gratitude, character strengths, forgiveness, self-compassion, savouring, or finding flow. Further analysis revealed that most studies from Arab countries have several methodological limitations. This included a lack of protocol guidelines, few well-designed randomized controlled trials (RCTs), blinding issues, small sample sizes, lack of active control groups, and lack of research into certain populations (e.g., teachers, employees, and people in distress in refugee camps). Discussion PP was founded on an individualistic framework (Christopher & Hickinbottom, 2008). To ensure that PPIs are culturally meaningful, this paper includes some cultural elements of the Arab region that should be considered to serve the needs of the Arab population. In the Arab world, some people may believe that PP is solely about happiness and being positive. If so, it is important to educate the public about the findings of rigorous studies evaluating PPIs such as gratitude, hope or flow on health, well-being and performance. To explain the value and effectiveness of these evidence-based approaches, examples might include studies linking gratitude with benefits for people with heart disease (Cousin et al., 2021), or how PPIs can promote quality of life in cancer patients (Casellas-Grau et al., 2014). There is some evidence about PPIs being effective in improving well-being in the Arab region, but research in this region is still in its infancy and little information is available regarding PPIs and the experience of Arabs participating in such interventions. Hence, there is still much more to investigate in this regard. Future research should empirically examine the effectiveness of various unstudied interventions such as savouring, gratitude, self-compassion, character strengths or finding flow. A combination of quantitative and qualitative approaches is required to provide an in-depth understanding of Arabs’ experience and impressions of PPIs and how and why they work. This may provide useful information to inform the appropriate design of PPIs to suit Arab culture and needs. Furthermore, while some research on PPIs has been carried out in the region, most of these studies have been of poor quality that suffered from small sample sizes, confounding factors, and a high degree of bias. To overcome these issues, future research should improve research quality, including protocol guidelines and well-designed RCTs. In particular, research should include randomization, allocation, blinding, power analysis to determine adequate sample size, active control groups to reduce bias, and follow-up periods of at least 12 months.Among the most popular resources that future PP practitioners may refer to are the International Positive Psychology Association (IPPA) and the International Positive Education Network (IPEN). Also, we recommend the Middle East Journal of Positive Psychology and the first regional book (Lambert & Pasha-Zaidi, 2019). To develop and/or adapt a multi-component PPIs, we would recommend referring to Character Strengths (Peterson & Seligman, 2004), the theory of well-being (PERMA Model: Positive Emotion, Engagement, Relationships, Meaning, and Accomplishment; Seligman, 2011), and the Five Ways to Well-being: Connect, Be Active, Take Notice, Keep Learning, and Give (Aked et al., 2008). Finally, single-component PPIs are based on theories like Broaden-And-Build (Fredrickson, 2004), Hope (Snyder et al., 2002), and Self-Determination (Deci & Ryan, 2012) can be also considered. Two other concepts that would be usefully applied are ‘Savouring’ (Bryant & Veroff, 2007) and Phillip Zimbardo’s Time Perspective (Stolarski et al., 2015). For instance, savouring has a positive temporal orientation to reminiscing the good memories from the past, enjoying the hedonic present moments, and willing proactively to make a better future. Now, what is even maybe more interesting for Muslims is “Transcendent Future” where all intentions, words and actions are devoted to that life after death. In addition, there is a model already prepared for the clinical purpose called Positive Psychotherapy (PPT). Tayyab Rashid and Martin Seligman published a PPT manual for clinicians in 2018. And for cross-cultural applications, including Muslim Arab culture, Rashid and Al-Haj Baddar (2019) have written a paper presenting PPT and its efficacy. PPT overview in detail shows sessions, themes, skills, practice, and cultural considerations where a mixture of PPIs based on PERMA, Strengths, and other PP concepts can be found. Regarding PP measurements, it is highly recommended to generate indigenous tools based on cultural backgrounds reviewed here in the article. An example of this is a tool for measuring Muslim well-being by including domains beyond what is found in Western literature. So far, in the Arab region, several attempts have been made to adapt PP tools. For example, Marei Salama-Younes (2018) validated the Arabic versions of different measures of well-being (e.g., satisfaction with life scale, the subjective vitality scale). Other validated scales as well include the self-compassion scale (Alabdulaziz et al., 2020), and the passion scale (Salama-Younes & Hashim, 2018). Conclusion This paper has discussed the cultural aspects of Arab countries and the need of developing culturally sensitive PPIs. The past decade has seen an increase in mental health problems in the Arab region. Stigma and lack of awareness have been always there. Among the issues are also wars, conflicts, and displacement in many Arab countries such as Iraq, Lebanon, and Palestine (Hassan et al., 2016). These indicate an urgent need to prevent mental illness and promote well-being. Indeed, we highlighted the importance of integrating culture with PPIs, following the guidelines for the cultural adaptation of PPIs (Hendriks & Graafsma, 2019) and the ethical guidelines for PP practice (Jarden et al., 2020). Another significant contribution of this paper is to highlight the importance of improving the quality of research conducted in Arab countries. In brief, this paper has several practical implications. It is an open invitation for researchers, policymakers, and practitioners alike to be more exposed to PP; as well as to better conceptualising and adapting interventions and measurement tools to the local culture in different sectors to maximize their effectiveness. And as we consider it as an invitation for us too, here we are starting a PPIs practice guide in Arabic language and for Arab practitioners. The insights gained from this paper may be useful for placing well-being on top of priorities for achieving individual, organizational, and optimal national functioning in different sectors. There is also a need to change the stigma or negative beliefs about seeking health for psychological support, which is an issue for countries in the Middle East (Baess, 2018). (shrink)

Open peer review (OPR) is moving into the mainstream, but it is often poorly understood and surveys of researcher attitudes show important barriers to implementation. As more journals move to implement and experiment with the myriad of innovations covered by this term, there is a clear need for best practice guidelines to guide implementation. This brief article aims to address this knowledge gap, reporting work based on an interactive stakeholder workshop to create best-practice guidelines for editors and journals (...) who wish to transition to OPR. Although the advice is aimed mainly at editors and publishers of scientific journals, since this is the area in which OPR is at its most mature, many of the principles may also be applicable for the implementation of OPR in other areas (e.g., books, conference submissions). (shrink)

Potential applications of genome editing in assisted reproductive technology (ART) raise a vast array of strong opinions, emotional reactions and divergent perceptions. Acknowledging the need for caution and respecting such reactions, we observe that at least some are based on either a misunderstanding of the science or misconceptions about the content and flexibility of the existing legal frameworks. Combining medical, legal and ethical expertise, we present and discuss regulatory responses at the national, European and international levels. The discussion has an (...) EU starting point and is meant as a contribution to the general international regulatory debate. Overall, this paper concludes that gene editing technologies should not be regulated autonomously. Rather, potential uses should be regulated under general, existing frameworks and where applicable by reference to sufficiently equivalent technologies and techniques already subject to specific regulation. To be clear, we do not argue for the hasty introduction of gene editing as a reproductive treatment option in the immediate future. We call for caution with regard to overreaching moratoria and prohibitions that will also affect basic research. We recommend flexible regulations that allow for further responsible research into the potential development of the technology. We call for an open and inclusive debate and argue that scientific communication should claim a more prominent role to counter the danger of widespread misinformation. A high level of transparency and accuracy should guide scientific communication while simultaneously global‐scale responsibility and governance should be fostered by promoting cross‐disciplinary thinking and multi‐level stakeholder involvement in legal and regulatory processes. (shrink)

This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both of and in data use. Individuals and groups (...) can be chilled in their personal lives, stigmatized or threatened, and used for the benefit of others when health information is wrongfully collected or used. Transparency and openness about data use, public involvement in decisions, and just distribution of the benefits of surveillance are core elements in the justification of surveillance practices. Understanding health surveillance practices, the concerns it raises, and how to respond to them is critical not only to ethical and trustworthy but also to publicly acceptable and ultimately sustainable surveillance practices. The book is of interest to scholars and practitioners of the ethics and politics of public health, bioethics, privacy and data technology, and health policy. These issues are ever more pressing in pandemic times, where misinformation can travel quickly and suspicions about disease spread, treatment efficacy, and vaccine safety can have devastating public health effects. (shrink)

Food insecurity, and its extreme form, hunger, occur whenever the accessibility to an adequate supply of nutritional and safe foods becomes restricted or unpredictable. They are recurring problems in certain regions of the US, as well as in many parts of the world. According to nation-wide surveys conducted by the US Bureau of the Census, between 1996 and 1998 an estimated 9.7% of US households were classified as food insecure (6.2% being food insecure without evidence of hunger, and 3.5% being (...) food insecure with moderate to severe hunger). This means that approximately 10 million households each year did not always have access to enough food to meet basic needs. A potential tool in the fight against food insecurity and hunger is information technology (IT), since its use and range of application continue to grow at astonishing rates. The study presented here examined the question of how information technology, particularly the Internet, can be used to promote food security. The study used an action science research approach, and a case study strategy, with the food security system of Oktibbeha County, Mississippi selected as the case for study. The research design was a two-phase process. Phase one consisted of a needs assessment among food assistance organizations in Oktibbeha County, and included interviews of key food assistance personnel. Phase one also included a survey of IT subject matter experts to seek their opinions about the current state of Web-based information technology. Phase two involved an analysis of various IT implementation issues, as well as the development of a Web-based food security information system prototype tool. The needs assessment results indicated that (a) certain food security system and information needs existed among the food assistance organizations in Oktibbeha County, and (b) appropriate information technologies existed that could be applied to these needs. The food security needs related to better communication and coordination of information, such as program information, food site inventory information, client history information, food donation information, and nutrition education information. In regard to technology development, a variety of scenarios were examined. These included client-side approaches, server-side approaches, simple e-mail-based systems, Java-based systems, systems based on the Common Gateway Interface (CGI), and commercial database systems. In applying the needs assessment and survey results, the researcher developed a prototype Web site (including a series of online database tools) that could be used to promote food security in counties such as Oktibbeha County. The results of this research show that appropriate, Internet-based, IT holds promise for the reduction of certain social problems, such as food insecurity and hunger. (shrink)

Openness implies bottom-up empowerment and top-down transparency. The Paradox of Openness analyses the tensions encountered when openness is applied to the quest for democracy and markets, freedom and truth, compliance and transparency, and consensus and dissent in progressive Nordic societies.

Automated algorithms are silently making crucial decisions about our lives, but most of the time we have little understanding of how they work. To counter this hidden influence, there have been increasing calls for algorithmic transparency. Much ink has been spilled over the informational account of algorithmic transparency—about how much information should be revealed about the inner workings of an algorithm. But few studies question the power structure beneath the informational disclosure of the algorithm. As a result, the (...) information disclosure itself can be a means of manipulation used by a group of people to advance their own interests. Instead of concentrating on information disclosure, this paper examines algorithmic transparency from the perspective of power, explaining how algorithmic transparency under a disciplinary power structure can be a technique of normalizing people’s behavior. The informational disclosure of an algorithm can not only set up some de facto norms, but also build a scientific narrative of its algorithm to justify those norms. In doing so, people would be internally motivated to follow those norms with less critical analysis. This article suggests that we should not simply open the black box of an algorithm without challenging the existing power relations. (shrink)

This perspective highlights a growing and concerning trend within the scientific publishing community: the increasing incidence of manuscript rejections within twenty-four hours of submission without peer review, followed by offers of transfer to a sister journal with a high article processing fee. Recommendations to address such issues, including increased transparency in the manuscript review process, the establishment of more robust editorial guidelines, and the promotion of equitable publishing opportunities regardless of financial capability have also been proposed.

Managers of public organizations face strong, and increasing, demands to open up their internal processes to public scrutiny. A more active and critical role in society, advances in communications technology, the 24-hour media cycle and growing numbers of independent regulators all add to the pressure on governments to become more accountable and transparent. This book analyses these pressures by examining the key concepts of accountability and transparency and the main institutional mechanisms of open government. It also discusses the problems (...) of accountability and transparency that arise for public managers sharing responsibilities across jurisdictional boundaries and in public-private partnerships. Drawing on examples from around the world, this engaging and accessible text provides a balanced account of open government which emerges as both a challenge and an aid to more effective public management. (shrink)

Recent professional guidelines published by the General Medical Council instruct physicians in the UK to be honest and open in any financial agreements they have with their patients and third parties. These guidelines are in addition to a European policy addressing disclosure of physician financial interests in the industry. Similarly, In the US, a national open payments program as well as Federal regulations under the Affordable Care Act re-address the issue of disclosure of physician financial interests in America. (...) These new professional and legal changes make us rethink the fiduciary duties of providers working under new organizational and financial schemes, specifically their clinical fidelity and their moral and professional obligations to act in the best interests of patients. The article describes the legal changes providing the background for such proposals and offers a prima facie ethical analysis of these evolving issues. It is argued that although disclosure of conflicting interest may increase trust it may not necessarily be beneficial to patients nor accord with their expectations and needs. Due to the extra burden associated with disclosure as well as its implications on the medical profession and the therapeutic relationship, it should be held that transparency of physician financial interest should not result in mandatory disclosure of such interest by physicians. It could lead, as some initiatives in Europe and the US already demonstrate, to voluntary or mandatory disclosure schemes carried out by the industry itself. Such schemes should be in addition to medical education and the address of the more general phenomenon of physician conflict of interest in ethical codes and ethical training of the parties involved. (shrink)

Self-knowledge presents a challenge for naturalistic theories of mind. Peter Carruthers’s (2011) approach to this challenge is Rylean: He argues that we know our own propositional attitudes because we (unconsciously) interpret ourselves, just as we have to interpret others in order to know theirs’. An alternative approach, opposed by Carruthers, is to argue that we do have a special access to our own beliefs, but that this is a natural consequence of our reasoning capacity. This is the approach of (...) class='Hi'>transparency theories of self-knowledge, neatly encapsulated in Byrne’s epistemic rule (BEL): If p, believe that you believe that p (Byrne 2005). In this paper, I examine an objection to Carruthers’s theory in order to see whether it opens up space for a transparency theory of self-knowledge: Is it not the case that in order to interpret someone I have to have some direct access to what I believe (cf. Friedman and Petrashek 2009)? (shrink)

Recently, there has been increasing interest in methodological aspects of advanced imaging, including the role of guidelines, recommendations, and experts’ consensus, the practice of self-referral, and the risk of diagnostic procedure overuse. In a recent Delphi study of the European Association for Nuclear Medicine (EANM), panelists were asked to give their opinion on 47 scientific questions about imaging in prostate cancer. Nine additional questions exploring the experts’ attitudes and opinions relating to the procedure of consensus building itself were also (...) included. The purpose was to provide insights into the mechanism of recommendation choice and consensus building as seen from the experts’ point of view. Results: Regarding the factors likely to influence the willingness to refer a patient for imaging, the most voted were incorporation into guidelines and data from scientific literature, while personal experience and personal relationship were chosen by a small minority. Regarding the recommendations more relevant to prescribe an imaging procedure, it resulted the incorporation into guidelines promoted by scientific societies (59% of votes); these guidelines also resulted the more trusted. With respect to patients’ preferences considered when prescribing an imaging procedure, the most voted was accuracy, resulted more important than easy access and time to access to the procedure. The majority of the experts expressed the opinion that there is a scarce use of imaging procedures in prostate cancer. With respect to the most relevant factor to build consensus, it resulted the transparency of the process (52% of votes), followed by multidisciplinarity of contributors. The main obstacle to incorporation of modern imaging procedures into guidelines resulted the lack of primary literature on clinical impact. Conclusions: Firstly, the panelists portray themselves as having Evidence-Based Medicine oriented and scientifically inclined attitudes and preferences. Secondly, guidelines and recommendations from scientific societies, especially clinical ones, are positively taken into account as factors influencing decisions, but panelists tend to consider their own appraisal of the scientific literature as more relevant. Thirdly, in respect of overuse, panelists do not think that advanced diagnostic procedures are overutilized in the specific case of Prostate Cancer, but rather they are underutilized. (shrink)

Ontologies are being used increasingly to promote the reusability of scientific information by allowing heterogeneous data to be integrated under a common, normalized representation. Definitions play a central role in the use of ontologies both by humans and by computers. Textual definitions allow ontologists and data curators to understand the intended meaning of ontology terms and to use these terms in a consistent fashion across contexts. Logical definitions allow machines to check the integrity of ontologies and reason over data annotated (...) with ontology terms to make inferences that promote knowledge discovery. Therefore, it is important not only to include in ontologies multiple types of definitions in both formal and in natural languages, but also to ensure that these definitions meet good quality standards so they are useful. While tools such as Protégé can assist in creating well-formed logical definitions, producing good definitions in a natural language is still to a large extent a matter of human ingenuity supported at best by just a small number of general principles. For lack of more precise guidelines, definition authors are often left to their own personal devices. This paper aims to fill this gap by providing the ontology community with a set of principles and conventions to assist in definition writing, editing, and validation, by drawing on existing definition writing principles and guidelines in lexicography, terminology, and logic. (shrink)

Modes of presentation (MOPs) are often said to have to be transparent, usually in the sense that thinkers can know solely via introspection whether or not they are deploying the same one. While there has been much discussion of threats to transparency stemming from externalism, another threat to transparency has gar- nered less attention. This novel threat arises if MOPs are robust, as I argue they should be according to internalist views of MOPs which identify them with represen- (...) tational vehicles, such as mental files. I explain how identifying MOPs with vehicles/files threatens trans- parency, provide empirical illustrations, and critically examine some attempts to dispel the threat. Rather than abandoning transparency, I outline a way of reconciling it with a robust view of mental files which takes seriously the idea that they are targets for investigation in cogni- tive science. Transparency does not require introspective access, and rather than as an incontrovertible principle for individuating MOPs, we can view it more modestly, as an open empirical hypothesis. (shrink)

Hawe et al. raise concerns about Human Research Ethics Committees (HRECs) taking a risk-averse and litigation-sensitive approach to ethical review of research proposals. HRECs are tasked with reviewing proposals for compliance with the National Statement on Ethical Conduct in Human Research for the purpose of promoting the welfare of participants. While these guidelines intentionally include a significant degree of discretion in HREC decision making, there is also evidence that HRECs sometimes request changes that go beyond the guidance provided by (...) the National Statement. When HRECs request changes outside their remit, inconsistencies between individual HRECs become more common, contributing to delays in ethical review and reducing the quality of HREC decision making. Improvements to the HREC regulatory system are needed to promote transparency and accountability. (shrink)

In this article, we develop the concept of Transparency by Design that serves as practical guidance in helping promote the beneficial functions of transparency while mitigating its challenges in automated-decision making environments. With the rise of artificial intelligence and the ability of AI systems to make automated and self-learned decisions, a call for transparency of how such systems reach decisions has echoed within academic and policy circles. The term transparency, however, relates to multiple concepts, fulfills many (...) functions, and holds different promises that struggle to be realized in concrete applications. Indeed, the complexity of transparency for ADM shows tension between transparency as a normative ideal and its translation to practical application. To address this tension, we first conduct a review of transparency, analyzing its challenges and limitations concerning automated decision-making practices. We then look at the lessons learned from the development of Privacy by Design, as a basis for developing the Transparency by Design principles. Finally, we propose a set of nine principles to cover relevant contextual, technical, informational, and stakeholder-sensitive considerations. Transparency by Design is a model that helps organizations design transparent AI systems, by integrating these principles in a step-by-step manner and as an ex-ante value, not as an afterthought. (shrink)

Authorship is commonly used as the basis for the measurement of research productivity. It influences career progression and rewards, making it a valued commodity in a competitive scientific environment. To better understand authorship practices amongst collaborative teams, this study surveyed authors on collaborative journal articles published between 2011 and 2015. Of the 8364 respondents, 1408 responded to the final open-ended question, which solicited additional comments or remarks regarding the fair distribution of authorship in research teams. This paper presents the analysis (...) of these comments, categorized into four main themes: (1) disagreements, (2) questionable behavior, (3) external influences regarding authorship, and (4) values promoted by researchers. Results suggest that some respondents find ways to effectively manage disagreements in a collegial fashion. Conversely, others explain how distribution of authorship can become a “blood sport” or a “horror story” which can negatively affect researchers’ wellbeing, scientific productivity and integrity. Researchers fear authorship discussions and often try to avoid openly discussing the situation which can strain team interactions. Unethical conduct is more likely to result from deceit, favoritism, and questionable mentorship and may become more egregious when there is constant bullying and discrimination. Although values of collegiality, transparency and fairness were promoted by researchers, rank and need for success often overpowered ethical decision-making. This research provides new insight into contextual specificities related to fair authorship distribution that can be instrumental in developing applicable training tools to identify, prevent, and mitigate authorship disagreement. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Martha Nussbaum FICTIONS OF THE SOUL* Gertrude says, "O Hamlet speak no more. / Thou turnst mine eyes into my very soul." He made her see her soul, then, with a speech. And many types of speeches try to do what Hamlet did here. They present us with accounts or pictures of ourselves, attempting to communicate to us some truth about what we really are — or (to use (...) what is already a certain sort of picture) to show us die insides of our human souls. These truths about ourselves are delivered in many different styles and forms: some through structured argument, some through more devious or more violent strategies. One distinguished thinker compared his discourse about the nature of the soul to dry translucent shafts of sunlight diat disperse the dark shadows of false belief. Another represents the recipient of a true account of the inside of her soul as crying out in pain: "These words like daggers enter in my ears." Clearly there ought to be connections between the way a drinker or writer conceives of the soul and the way he or she constructs a discourse to convey important trudis to such a soul — including, and especially, the truth about the nature of the soul. Whether we are to be approached with sunbeams or with daggers, whether we need light or violent motion to show us what we are: this seems to depend upon what, in fact, we are. On the answer to questions such as: Are our souls transparent? opaque? open? thick-skinned? And: is getting in touch with a human soul like shining light through a diamond? Like embracing a friend? Like drawing blood? To speak more prosaically, on die answers to questions such as: How does a soul arrive at truth? What elements does it have that promote and impede understanding? What is die subject matter or content of the most important truths about it? And in what sort of activity does knowing it consist? A story or account of die soul is, then, told. The telling, if the story is a good one, is not accidentally connected with the content of the told. And this * Editor's note: This article, as well as the contributions by Joseph Margolis, Félix MartínezBonati, and Sanford Freedman which follow it, grew out of a symposium on "Styles of Fictionality," held at Harvard University in 1981. Other papers from that symposium appeared in the April, 1983 issue of Philosophy and Literature. 145 146PHILOSOPHY AND LITERATURE ought to be so whether die teller is a literary artist, whom we suppose always to be conscious of the nature of the stylistic choices, or a philosopher, whom we often think of as avoiding or eschewing style altogether. No stylistic choice can be presumed to be neutral — not even the choice to write in a flat or neutral style. My aim in this article is to begin working on the complicated connections between a view of what a human soul is and a view about how to address that sort of soul in writing, in die communication of die view.1 I have chosen two very different views, associated with two extremely different styles. One will be an intellectualistic view of die person, expressed in a style commonly associated widi philosophical writing; the other, expressed in a literary narrative, will be severely critical of intellectualism. The philosophical view is associated with a harsh criticism ofliterary art, the literary view widi an equally harsh criticism of philosophical investigation. In each case, I want to ask how the story that is told engages, in the telling, widi the reader's soul, and how the telling and the told are matched. I have chosen two extremes not because I wish to suggest diat these positions somehow express the essence of the philosophical or the literary, but because diey speak to and criticize one another in an illuminating way. By seeing their opposing elements starkly and schematically set out, we will be in a better position, should we wish to, to imagine an alternative between them. My philosophical protagonist will be Plato — or certain aspects of Plato; the literary opponent will be Proust. I shall, in... (shrink)

The use of Artificial Intelligence and Big Data in health care opens up new opportunities for the measurement of the human. Their application aims not only at gathering more and better data points but also at doing it less invasive. With this change in health care towards its extension to almost all areas of life and its increasing invisibility and opacity, new questions of transparency arise. While the complex human-machine interactions involved in deploying and using AI tend to become (...) non-transparent, the use of these technologies makes the patient seemingly transparent. Papers on the ethical implementation of AI plead for transparency but neglect the factor of the “transparent patient” as intertwined with AI. Transparency in this regard appears to be Janus-faced: The precondition for receiving help - e.g., treatment advice regarding the own health - is to become transparent for the digitized health care system. That is, for instance, to donate data and become visible to the AI and its operators. The paper reflects on this entanglement of transparent patients and (non-) transparent technology. It argues that transparency regarding both AI and humans is not an ethical principle per se but an infraethical concept. Further, it is no sufficient basis for avoiding harm and human dignity violations. Rather, transparency must be enriched by intelligibility following Judith Butler’s use of the term. Intelligibility is understood as an epistemological presupposition for recognition and the ensuing humane treatment. Finally, the paper highlights ways to testify intelligibility in dealing with AI in health care ex ante, ex post, and continuously. (shrink)

In the late 2010s, various international committees, expert groups, and national strategy boards have voiced the demand to ‘open’ the algorithmic black box, to audit, expound, and demystify artificial intelligence. The opening of the algorithmic black box, however, cannot be seen only as an engineering challenge. In this article, I argue that only the sort of transparency that arises from critique—a method of theoretical examination that, by revealing pre-existing power structures, aims to challenge them—can help us produce technological systems (...) that are less deceptive and more just. I relate the question of AI transparency to the broader challenge of responsible making, contending that future action must aim to systematically reconcile design—as a way of concealing—with critique—as a manner of revealing. (shrink)

BackgroundThe advent of learning healthcare systems (LHSs) raises an important implementation challenge concerning how to request and manage consent to support secondary use of data in learning cycles, particularly research activities. Current consent models in Quebec were not established with the context of LHSs in mind and do not support the agility and transparency required to obtain consent from all involved, especially the citizens. Therefore, a new approach to consent is needed. Previous work identified the meta-consent model as a (...) promising alternative to fulfill the requirements of LHSs, particularly large-scale deployments. We elicited the public’s attitude toward the meta-consent model to evaluate if the model could be understood by the citizens and would be deemed acceptable to prepare for its possible implementation in Quebec.MethodsEight focus groups, with a total of 63 members of the general public from various backgrounds were conducted in Quebec, Canada, in 2019. Explicit attention was given to literacy levels, language spoken at home and rural vs urban settings. We assessed attitudes, concerns and facilitators regarding key components of the meta-consent model: predefined categories to personalized consent requests, a dynamic web-based infrastructure to record meta-consent, and default settings. To analyse the discussions, a thematic content analysis was performed using a qualitative software.ResultsOur findings showed that participants were supportive of this new approach of consent as it promotes transparency and offers autonomy for the management of their health data. Key facilitators were identified to be considered in the implementation of a meta-consent model in the Quebec LHSs: information and transparency, awareness campaigns, development of educational tools, collaboration of front-line healthcare professionals, default settings deemed acceptable by the society as well as close partnerships with recognized and trusted institutions.ConclusionsThis qualitative study reveals the openness of a sample of the Quebec population regarding the meta-consent model for secondary use of health data for research. This first exploratory study conducted with the public is an important step in guiding decision-makers in the next phases of implementing the various strategies to support access and use of health data in Quebec. (shrink)

Unequal treatment of human research subjects is a significant ethical concern, because justice in research involving human subjects requires equal protection of rights and equal protection from harm and exploitation. Disputes sometimes arise concerning the issue of unequal treatment of research subjects. Allegedly unequal treatment occurs when subjects are treated differently and there is a genuine dispute concerning the appropriateness of equal treatment. Patently unequal treatment occurs when subjects are treated differently and there is not a genuine dispute about the (...) appropriateness of equal treatment. Allegedly unequal treatment will probably always occur in research with human subjects due to disagreements about fundamental questions of justice. The best way to deal with allegedly unequal treatment is to promote honest and open discussions of the issues at stake. Research regulations can help to minimize patently unequal treatment by providing rules for investigators, ethical review boards, institutions, and sponsors to follow. However, patently unequal treatment may still occur because the regulations are subject to interpretation. Federal agencies have provided interpretive guidance that can help promote consistent review and oversight of human subjects research. Additional direction may be needed on topics that are not adequately covered by current guidance or regulations. International guidelines can help promote equal treatment of human subjects around the globe. While minor variations in the treatment of research subjects should be tolerated and even welcomed, major ones (i.e. those that significantly impact human rights or welfare) should be avoided or minimized. (shrink)

Transparency is a salutary value in our constitutional architecture. It has also been described as a necessary element in promoting accountability in the regulatory aspects of essential medicines. Despite its several incarnations, the Medicines and Related Substances Act (Medicines Act) retains a provision headed 'Preservation of secrecy' (section 34). This contributionseeks to evaluate section 34 in the context of transparency and ascertain whether it is in conflict with other legislation pertaining to the promotion of access to information (...) and, in particular, whether it is consistent with the Constitution of the Republic of South Africa. (shrink)

"Ever Since This World Began" from Love Dog (Penny-Ante Editions, 2013) by Masha Tupitsyn continent. The audio-essay you've recorded yourself reading for continent. , “Ever Since the World Began,” is a compelling entrance into your new multi-media book, Love Dog (Success and Failure) , because it speaks to the very form of the book itself: vacillating and finding the long way around the question of love by using different genres and media. In your discussion of the face, one of the (...) themes of Love Dog , I think there is something to be said about the surfaces media create and how you constantly manipulate them in your work. This seems important for thinking also about your book LACONIA: 1,200 Tweets on Film ; a book on film written in tweets, interposing already three sets of expectations and pushing the boundaries of each medium's faciality, it's surface tension. In Love Dog , is there another kind of facial interaction? Perhaps the discursive faces of approaching love as topic and love as method? If so, how did/do these intersect for you, do/did they drive the creation of this book? MASHA TUPITSYN With LACONIA and Love Dog , I wanted to pay homage to the work modernism has done on subjective time and chronological time by carrying that experiment over into the digital economy. Because LACONIA is a time-based work of cultural criticism that employs the aphorism to look at 21 st century American culture, it is also an archival work of cultural mourning and memory. And in Love Dog , which is also a work about mourning as it relates to love, I wanted to think with all my senses, and to reflect that in the writing itself by using a multi-media form. LACONIA tackled the sound bite and the promotional image--the everyday language of consumer culture--which often wants to communicate ideological agendas through the repetition of a single image or reductive phrase. I had always been interested in the approaches of artists like Barbara Kruger and Jenny Holzer and essayistic, typographical filmmakers, like Chris Marker and Godard. In both cases, I felt it was important to try to compose a book in which deep—critical—thinking happens in so-called immediate, informal, and disposable contexts. That is, in places where you are either not supposed to be serious or are not required to take things seriously. To me the most intervention is needed in every day instances of culture and representation. In order to do that, I had to utilize and interrogate the very structures I was critiquing. In other words, the writing had to materialize in that live, digital, public space. It couldn’t simply happen at home on a piece of paper or in a word document on my computer that no one could see until it was finished. It had to unfold in real time, amidst everything else. And it had to literally be surrounded by the cultural landscape I wanted to assess. In both LACONIA and Love Dog , I wanted to know how and if we can get away from what we cannot get away from? From which there is no respite. Given this, I don’t think hypertexts can really be called hypertexts anymore. Hypertexts are simply the world today. This is not only the way we read the world now. It is the way the world reads. Likewise, interfaciality, as you put it, works on a number of levels for me, both on and off the page. There is my relation to epistemological and phenomenological surfaces—the screen, the body, the face, the voice, gender; the official story. Then there is the way this dovetails formally, and to which the digital adds yet another dimension. It’s also where sound comes into Love Dog (giving the book a sound; giving tonality to the book’s ideas and feelings). As Anne Carson pointed out in her essay “The Gender of Sound,” the two are connected, and of course so are love and gender. In “Ever Since This World Began,” I wanted to think about the phenomenology of the voice, which is why I visualize the sonic in the book and why in my writing about faces, I look at the tonal aspects (the things a face voices and a voice faces) of a face. This was standard to do when images and faces were “silent” in the silent era. Those images/faces were extraordinarily audible. The greatest screen face, to me, is still Falconetti’s in Dreyer’s The Passion of Joan of Arc . We can hear her face—even though there is no actual sound on screen of her speaking. The internet is a similarly “silent” space where actual voices are lacking. So intertextuality goes with interfaciality. I’ve also talked a lot about how categorization worked when it came to the reception of my first book, Beauty Talk & Monsters . How despite the fact that Beauty Talk is a text that crisscrosses form and content in a variety of ways, not pinpointing its exact genre—choosing one genre over another—only made things worse. Fiction was the category people were most adverse to me using, even though of course there is a lot of fiction in the book. Part of how fiction works in Beauty Talk is in the reader not knowing exactly where the fiction resides. In Godard’s 1967 film, Weekend , for example, everything matters. Everything is political, whether it’s real or imaginary, film or reality. In Weekend , life is not a game and neither is the game a game. The game is really life. Either everything is important or nothing is. But many people want clear answers and demarcations so that they can decide what is important and what is not important. My use of the “I,” subjective criticism, made everything “real” in Beauty Talk . But fiction is in the construction. It is in the blending. This is why I perforate the movie screen and connect the onscreen and the offscreen; the official story and the backstory. Although I don’t think there is a difference between onscreen and offscreen anymore. Nor is there a dialectic. It’s all screen all the time now. Non-fiction, on the other hand, was more tolerated as a moniker. Unlike Love Dog , Beauty Talk wasn’t explicitly or tangibly (what is tangible is a question in all these books) working with digital forms or within this digital economy, so some people resisted the book’s hypertextuality or intertextuality because they couldn’t see its other forms, if that makes sense. It was a problem of invisibility; of how to make something appear (this is where Nietzsche, big presence in Love Dog , comes in—the nature of appearances). Something people don’t necessarily want to see. Some readers couldn’t see the way forms were interfacing in that book. On the surface, Beauty Talk was simply a text about media culture—the domination of entertainment as a mode of being and knowing—and most readers could only see that one side of the book. But as Godard puts it in Wim Wenders’ documentary about the future of cinema, Room 666 , “Films are made, images are made, when there’s no one looking. That’s what the invisible is, that which we don’t see. That’s what the incredible is, that which we don’t see. And cinema shows you that which we don’t see, the incredible.” We are living in the aftermath of narrative and temporal collapse, which means we don’t read or feel in the same way. I began to use digital forms in my writing because I don’t see us as traditional book people anymore. I would add that power also resides in the invisible, in the things we make invisible by making them visible. Or it did for a long time. The new face of power is quickly becoming so-called transparency, which is even more corrupt because even though we now live in a behind-the-scenes culture, and see and know how the mechanisms of power and corruption operate, we still don't change. The world still doesn't change. Finally, another important thing that Godard says in Room 666 that relates to Love Dog is: “I’m here in front of the camera, and yet in my body and in my head, I’m behind it. My world is the imaginary and the imaginary is a journey between forwards and backwards.” This idea of visible/invisible, foresight and hindsight , backwards and forwards is an important dialectic in relation to time and the idea of the destinal. This is why I wanted Love Dog to travel, literally, figuratively, and discursively. You have to be open to not knowing. To epistemological, geographical, chronological, and emotional aporias. In Love Dog my story is both visible and invisible to me. Sometimes I could see where I was going. Other times I was completely in the dark existentially. Truth procedure, which love is, as bell hooks and Badiou tell us, requires expedition and openness to possibility. Unless you want a story you already know, but that is not truth procedure. So I tried to create this backwards and forwards journey in the book—this sense of travel and motion, hope and doubt—by jumping between forms, media, time; traveling to different places, texts, and emotional registers. The book’s “Time-Jump series,” which mostly takes the form of music—songs—but also a series of “green” videos that I shot, is the most obvious tribute to this idea of subjective and chronological time. continent. Your work aligns with writers that play with the form of their language, or have assumed the role of performance artist at some point: Kathy Acker, Chris Kraus, Avital Ronell, and Anne Carson to name a few representing varied approaches that show up in Love Dog . At the risk of ossifying the work, or missing the point—as these experimental modes of writing stack-up in piles of published works, do they approach a genre? MASHA As I noted in my book Life As We Show It , in Chelsea Girls the poet Eileen Myles points out, “You can’t get money without a category.” More importantly, you can’t get a category—or respect, rank—without a clear genre. This makes genre and gender an obvious pair. The two words are even linked etymologically and both genre and gender concern taxonomies of legitimacy—of sorting through what and who is valuable. So the words share common prejudices. The things one does not want to read is often synonymous with who one doesn't want to read about. Therefore a break-up of or with genre is maybe the genre or anti-genre that could be said to link these writers. Avital Ronell breaks up with philosophical tradition and modes of inquiry. Like Nietzsche, she revaluates methods of evaluation, testing out things you are not supposed to use philosophy to test (and, by the same token, testing philosophy in ways it’s not supposed to be tested), like drugs and stupidity—where philosophy fails and we fail philosophy. And Chris Kraus does something similar in her experimental fiction, using different forms to put female subjectivity “to the test,” so to speak. All these female writers and thinkers have tried to destabilize the systems that have been set up in (and against) writing. Thus missing the mark with genre, even intentionally, means that we have missed the point in some sense as writers and thinkers. And that to me is a good thing, however difficult. We’ve started at the wrong point and gone somewhere else instead. We’ve acknowledged that writing and thinking are also about failure, and that failure is always embedded in the act of writing and in our reasons for writing. So that missing the point is also the point. Derrida insisted: “We must invent a name for those ‘critical’ inventions which belong to literature while deforming its limits.” But how can you give something that resists and deforms, a name? Wouldn’t the name also be deformed? Isn't this why the aforementioned writers get hyphenated descriptors like ficto-criticism? Do we need a proper name to be able to read something carefully? I don’t think so. I don’t need it as a reader. I’ve always taken a work on its own terms. But for most people, if you don’t have an address, people don’t know how to find you. A lot of time, they won’t even know how to look. And in some cases, they’ll think you’re not even worth finding. You are not on the map because you have to literally make the map in order to exist. In her essay, “The Gender of Sound” Carson asks, “Why is female sound bad to hear?” I think for the same reason something uncategorizable (pedagogically, creatively, racially, and sexually)—Other—is hard to read. *For an audio recording of Florida , read by Masha Tupitsyn click here . continent. : We're also curious to hear know how you see the significance of 'performance' (and why the label sticks to the shoes of these authors like toilet paper) in describing this kind of writing work? MASHA I think I responded to the parenthetical portion of this question in my previous answer. As far as how performance relates to Love Dog , in Acker’s Don Quixote , which is another big presence in the book, she writes, “there is no other reality than anthropomorphism.” In Don Quixote , the dog is human and the human is dog. Which brings us to the title of Love Dog and the totemic function of the dog in the book: giving human things animal characteristics and animal things human characteristics. Rather than investing all our human love ideals into dogs, which we do constantly as a culture of dog lovers, I wanted to put the dog into love. It is the difference between the consumption of love as a patriarchal institution or status position and the essence of a type of radical and liberatory relation that would benefit humans in their bonds with other humans. So the dog in Love Dog is not simply the book’s cover or performative affect, so to speak. Love has always needed the dog, which is why the dog is the very embodiment of belief in love . Recall Argos The Great Dog and Odysseus. Argos is the only one who remembers and recognizes the ragged and old Odysseus even after his 20-year absence. So love is the high ideal and the dog, both common and dependable, is the bridge between the sacred and the profane. The dog is the house of love. And because Love Dog is a digital project, it seemed impossible to think about the post-human, technology, the virtual, or difference (which Badiou says is essential to love in In Praise of Love ) without thinking about animal-being and being-animal. Instead of simply “performing” these ideas and characteristics as literary affects, I’m interested in being-becoming. Which means the book’s tropes, leitmotifs, series, and even its titles are in service of that truth procedure. In other words, I actually want to live this way, not just write this way. And, more importantly, I want to live this way not just think this way. So Love Dog became both my totem animal and my autobiographical animal. This made the book organic, anthropomorphic—beyond literary. See the trailer to Masha Tupitsyn's new book available now from Penny Ante Editions. (shrink)

BackgroundWithholding and withdrawing treatment are deemed ethically equivalent by most Bioethicists, but intensivists often find withdrawing more difficult in practice. This can lead to futile treatment being prolonged. Time-limited trials have been proposed as a way of promoting timely treatment withdrawal whilst giving the patient the greatest chance of recovery. Despite being in UK guidelines, time-limited trials have been infrequently implemented on Intensive Care Units. We will explore the role of time in Intensive Care Unit decision-making and provide a (...) UK perspective on debates surrounding time-limited trials.MethodsThis qualitative study recruited 18 participants (nine doctors, nine nurses) from two Intensive Care Units in North West England for in-depth, one-to-one semi-structured interviews. A thematic analysis was performed of the data.ResultsOur findings show time is utilised by Intensive Care Unit staff in a variety of ways including managing uncertainty when making decisions about a patient’s prognosis or the reversibility of a disease, constructing relationships with patients’ relatives, communicating difficult messages to patients’ relatives, justifying resource allocation decisions to colleagues, and demonstrating compassion towards patients and their families.ConclusionsTime shifts the balance towards greater certainty in Intensive Care Unit decision-making, by demonstrating futility, and can ease the difficult transition for staff and families from active treatment to palliation. However, this requires clear and open communication, both within the Intensive Care Unit team and with the family, being prioritised when time is used in decision-making. (shrink)

To achieve lower medical spending with as little reduction as possible in good outcomes, practitioners and policy makers alike have been experimenting with the use of practice guidelines. These guidelines both recommend certain types of therapies and proscribe others in the treatment of patients with particular conditions. This paper explores the question of whether guidelines which do reduce total resource costs of medical care to a population will be feasible and produce “acceptable” results. The definition of acceptable (...) is part of the policy problem, so it will be left open for a while, but the question of which outcomes match with which levels of resource cost will form the positive basis for the normative judgment of “acceptability.”. (shrink)

Scientific data‐sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepresented groups. Together, these efforts aim to promote equitable advancements in genomic medicine. However, if not guided by community‐informed protections, these efforts may harm the very participants and communities they aim to benefit. This essay examines potential benefits and harms of (...) open science and explores how to advance a more just vision of open science in genomics. Drawing on relational ethics frameworks, we argue that researchers should consider their obligations to participants as well as the broader communities that are impacted by their research. We propose eight strategies to provide a foundation of practical steps for researchers to reduce the possibility of harms stemming from open science and to work toward genomic justice. (shrink)

"Open Democracy envisions what true government by mass leadership could look like."—Nathan Heller, New Yorker How a new model of democracy that opens up power to ordinary citizens could strengthen inclusiveness, responsiveness, and accountability in modern societies To the ancient Greeks, democracy meant gathering in public and debating laws set by a randomly selected assembly of several hundred citizens. To the Icelandic Vikings, democracy meant meeting every summer in a field to discuss issues until consensus was reached. Our contemporary representative (...) democracies are very different. Modern parliaments are gated and guarded, and it seems as if only certain people—with the right suit, accent, wealth, and connections—are welcome. Diagnosing what is wrong with representative government and aiming to recover some of the lost openness of ancient democracies, Open Democracy presents a new paradigm of democracy in which power is genuinely accessible to ordinary citizens. Hélène Landemore favors the ideal of “representing and being represented in turn” over direct-democracy approaches. Supporting a fresh nonelectoral understanding of democratic representation, Landemore recommends centering political institutions around the “open mini-public”—a large, jury-like body of randomly selected citizens gathered to define laws and policies for the polity, in connection with the larger public. She also defends five institutional principles as the foundations of an open democracy: participatory rights, deliberation, the majoritarian principle, democratic representation, and transparency. Open Democracy demonstrates that placing ordinary citizens, rather than elites, at the heart of democratic power is not only the true meaning of a government of, by, and for the people, but also feasible and, today more than ever, urgently needed. (shrink)

Ci troviamo in un’epoca di grandi mutamenti e di veloce evoluzione della comunicazione scientifica. Alla chiusura e inaccessibilità di testi, dati e processi di qualità si sostituisce la richiesta corale di trasparenza, equità e democraticità. All’idea di una scienza competitiva ed esclusiva si sostituisce quella di una scienza collaborativa in cui la condivisione dei risultati è il valore fondante e punto di forza per un più veloce sviluppo. Cambia e viene messo in discussione il ruolo degli editori commerciali che devono (...) reinventarsi in questo nuovo contesto, cambiano gli equilibri di potere fra editor, revisori ed autori. Gli strumenti per rispondere a questa richiesta corale di trasparenza sono tutti a nostra disposizione, ma ancora da parte delle comunità scientifiche si avverte qualche difficoltà a recepire le nuove modalità di pratica, validazione e disseminazione della ricerca. Ancora si assiste a una certa diffidenza e forse sgomento di fronte ai pubblici possibili e ad un ciclo di vita delle ricerche che è potenzialmente infinito. Sulle spalle dei giganti, citava Newton. E ciò è soprattutto vero se vengono eliminate le barriere economiche e legali che hanno fino ad ora rappresentato un ostacolo, o per lo meno un rallentamento per lo sviluppo della ricerca scientifica. "Doctor Virtualis" è una rivista umanistica, di settore, che ha abbracciato in tempi piuttosto lontani la filosofia dell’apertura promossa dall’ateneo che oggi si è rivelata vincente. La sua storia è la storia della piattaforma di riviste che la ospita alla quale la rivista ha aderito fin dal primo anno. We are in an era of rapid evolution of scholarly communication. The inaccessibility of quality texts, data, and processes is being replaced by a choral demand for transparency, equity, and democraticity. The idea of a competitive and exclusive science is replaced by that of a collaborative science in which the sharing of results is the founding value and strength for faster development. The role of commercial publishers who must reinvent themselves in this new context changes and is challenged; the balance of power between editors, reviewers and authors changes. The tools for responding to this choral demand for transparency are all at our disposal, but still from the scientific communities there is some difficulty in taking on board the new ways of practicing, validating and disseminating research. There is still some distrust and perhaps dismay in front of possible audiences and a research life cycle that is potentially never-ending. On the shoulders of giants, Newton quoted. And this is especially true if the economic and legal barriers that have hitherto been an obstacle, or at least a slowdown to the development of scientific research are removed. Doctor Virtualis is a humanistic journal that embraced in rather distant times the philosophy of openness promoted by the university that has proved successful today. Its story is the story of the journal platform that hosts it to which the journal has joined since its first year. (shrink)

A link between populism and social media is often suspected. This paper spells out a set of possible mechanisms underpinning this link: that social media changes the communication structure of the public sphere, making it harder for citizens to obtain evidence that refutes populist assumptions. By developing a model of the public sphere, four core functions of the public sphere are identified: exposing citizens to diverse information, promoting equality of deliberative opportunity, creating deliberative transparency, and producing common knowledge. A (...) wellworking public sphere allows citizens to learn that there are genuine disagreements among citizens that are held in good faith. Social media makes it harder to gain this insight, opening the door for populist ideology. (shrink)

In response to a series of allegations of scientific misconduct in the 1980’s, a number of scientific societies, national agencies, and academic institutions, including Harvard Medical School, devised guidelines to increase awareness of optimal scientific practices and to attempt to prevent as many episodes of misconduct as possible. The chief argument for adopting guidelines is to promote good science. There is no evidence that well-crafted guidelines have had any detrimental effect on creativity since they focus on design (...) of research studies, documentation of research findings, assignment of credit through authorship, data management and supervision of trainees, not on the origin and evolution of ideas. This paper addresses a spectrum of causes of scientific misconduct or unacceptable scientific behavior and couples these with estimates of the potential for prevention if guidelines for scientific investigation are adopted. The conclusion is that clear and understandable guidelines should help to reduce the chance that flawed research will escape from our institutions. However, they cannot be relied upon alone to prevent all instances of scientific misconduct and should be regarded rather as one means of bolstering the integrity of the entire scientific enterprise. (shrink)

Pharmaceutical promotion is a negative influencing force for prescribing. However, very few regulatory initiatives are taken to overcome this unwarranted influence. The present research was conducted in such context with an attempt to review the regulatory documents related to pharmaceutical promotion in Bangladesh including Code of Pharmaceutical Marketing Practices (CPMP), and to compare CPMP with different global guidelines. The studied guidelines demonstrate effort to regulate promotion, though that varies to a great extent, particularly in enforcement (...) aspects. Clearly defined ethical and legal prohibitions, provisions of punishment for violations and entrusted agency with defined authority are crucial. (shrink)

Large organisations are especially advised to consider the possibility of an Ethics Helpdesk in which all employees and managers can report with all suspected cases of unethical conduct, critical comments, dilemmas and advice for which there is insufficient room within the organisational hierarchy. A helpdesk is a central contact point where it is decided who the most appropriate person is to dealing with a given case. The helpdesk model is characterised by low barriers in its easy accessibility, positive approach and (...) the simple procedures employees need to follow. It offers employees consistent support while relying on the responsibilities of the individual employee as much as possible and it facilitates adequate monitoring and reporting. A helpdesk increases the chances of detecting unethical conduct which enables management to take adequate and timely measures against improper conduct. This article formulates principles, discusses critical factors and considers three models for adopting a sound and integrated ethics safety net. It also presents a case study and shows why organisational openness needs to be institutionalised. (shrink)

Open-mindedness is widely regarded as an epistemic virtue and, more recently, a moral one: its exercise is supposed to be conducive not only to the acquisition of epistemic goods such as truth, knowledge, and understanding, but also to the development of moral goods such as the promotion of social cohesion and the fostering of people’s respect and care for one another. This glossy view of open-mindedness, however, has come under challenge. Critics have argued that adopting a default stance of (...) openness can be detrimental to our epistemic and moral selves, especially in today’s world where fake news, attacks on the idea of truth, and blatant lies abound. The articles in this symposium by Howard Curzer and Jessica Gottlieb and by Matt Ferkany represent some of these challenges. Concerned with the question of when it is safe to exercise open-mindedness, both seek to identify the potential hazards that may arise as a result being open-minded and to propose ways to curtail those hazards. In this paper, I will assess each of their arguments in turn. (shrink)