Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...) a European research consortium demonstrate a gap between the aims of the regulation and its effects in practice. Namely, strictly formalised data protection requirements may cause routinisation among researchers instead of substantive ethical reflection, and may crowd out trust between actors in the health data research ecosystem; while harmonisation across Europe and data sharing between countries is hampered by different interpretations of the law, which partly stem from different views about ethical values. Then, building on these observations, we use theory to argue that the concept of trust provides an escape from the privacy-solidarity debate. Lastly, the paper details three aspects of trust that can help to create a responsible research environment and to mitigate the encountered challenges: trust as multi-agent concept; trust as a rational and democratic value; and trust as method for priority setting. Mutual cooperation in research—among researchers and with data subjects—is grounded in trust, which should be more explicitly recognised in the governance of health data research. (shrink)

Logic; Islamic philosophy; Islam--doctrines.

Objectives The objective of this research was to develop ethics accreditation standards for hospitals. Research design Our research methods included a literature review, an expert focus group, the Delphi technique and a hospital survey. The entire process was separated into two stages: (1) the development of a draft of hospital ethics accreditation standards; and (2) conducting a nationwide hospital survey of the proposed standards. Results This study produced a tentative draft of hospital ethics accreditation standards comprised of six chapters and (...) 62 standards based on the expert focus group and Delphi technique. The six chapters are: Medical ethics policies, regulations and leadership; The establishment and operation of a medical ethics committee; The establishment and operation of research-related ethics committees; Medical ethics education; Organisational ethical climate; and Respect for patients' rights and establishment of good hospital-patient relationships. The hospital survey indicated that the concept of an organisational ethical climate was new to most hospital managers, most hospitals disliked the idea of having a separate hospital ethics accreditation system, and small hospitals were concerned about their ability to comply with all of the standards. Conclusions Regardless of whether hospital ethics accreditation can be a stand-alone accreditation or just part of existing hospital accreditation programmes, we hope this draft can serve as a good reference for future endeavours by hospital accreditation authorities. (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)

A traditional approach to teaching medical ethics aims to provide knowledge about ethics. This is in line with an epistemological view on ethics in which moral expertise is assumed to be located in theoretical knowledge and not in the moral experience of healthcare professionals. The aim of this paper is to present an alternative, contextual approach to teaching ethics, which is grounded in a pragmatic-hermeneutical and dialogical ethics. This approach is called moral case deliberation. Within moral case deliberation, healthcare professionals (...) bring in their actual moral questions during a structured dialogue. The ethicist facilitates the learning process by using various conversation methods in order to find answers to the case and to develop moral competencies. The case deliberations are not unique events, but are a structural part of the professional training on the work floor within healthcare institutions. This article presents the underlying theory on ethics and illustrates this approach with an example of a moral case deliberation project in a Dutch psychiatric hospital. The project was evaluated using the method of responsive evaluation. This method provided us with rich information about the implementation process and effects the research process itself also lent support to the process of implementation. (shrink)

Gametes, tissue, and organs can be taken from the dying or dead for reproduction, transplantation, and research. Whole bodies as well as parts can be used for teaching anatomy. While these uses are diverse, they have an ethical consideration in common: the claims of the people whose bodies are used. Is some use permissible only when people have consented to the use, actually wanted the use, would have wanted the use, not opposed the use, or what? The aim of this (...) article is to make progress in answering these questions. Initially I assume knowledge of people’s desires in order to test whether consent is directly required by their rights without worrying about mistaken uses against their wishes. I claim consent is not directly required by people’s rights. If we know people wanted or would want a use, their rights permit the use, but if we know they wanted or would want not to be used, their rights do not permit the use. The knowledge assumption is then dropped and the question becomes how to decide what to do when the wishes of rightholders are not known. I suggest working out what to do when wishes are known and then adjusting, on the basis of whatever evidence there is, for probability and strength of desire. There are other considerations too, for instance about default rules. The key general comment here is that, in setting rules, the costs to rightholders in not getting what they want needs to be taken into account. The final section tries to show that, in setting these rules, mistaken uses are not to be taken as worse than mistaken failure to use. (shrink)

Describes the author’s value of choice account of responsibility and examines a response by Stemplowska to an objection to this account, raised by Alex Voorhoeve. Argues that the problem raised by Voorhoeve’s example concerns the way in which risk is taken into account in contractualism rather than the value of choice account of responsibility. Departs from the author’s earlier work in arguing that the risk of harm should sometimes be taken into account on an ex ante rather than an ex (...) post basis. (shrink)

We introduce a simple model for so-called spin-echo experiments. We show that the model is a mincing system. On the basis of this model we study fine-grained entropy and coarse-grained entropy descriptions of these experiments. The coarse-grained description is shown to be unable to provide an explanation of the echo signals, as a result of the way in which it ignores dynamically generated correlations. This conclusion is extended to the general debate on the foundations of statistical mechanics. We emphasize the (...) need for an appropriate mechanism to explain the gradual suppression over time of the correlations in a thermodynamic system. We argue that such a mechanism can only be provided by the interventionist approach, in which the interaction of the system with its environment is taken into account. Irreversible behavior is then seen to arise not as a result of limited measurement accuracy , but as a result of the fact that thermodynamic systems are limited systems which interact with their environment. A detailed discussion is given of recent objections to the interventionist approach in the literature. (shrink)

People often have strong views about being the subjects of research after their deaths. Should these views be given any weight and, if so, how much? How could we find out what the views are and what should we do if we cannot? This paper defends the idea of posthumous interests and discusses the significance of those interests for research ethics. It argues that we can be guided by a symmetry between the interests of living and dead people and uses (...) posthumous privacy as an example. It also claims that the weight of those interests might not decline even over long periods of time. The arguments have important implications for the ethics of (amongst others) biomedical, archaeological, anthropological, historical, and sociological research. (shrink)

It is generally wrong to manipulate. One leading reason is because manipulation interferes with autonomy, in particular the component of autonomy called ‘independence’, that is, freedom from intentional control by others. Manipulative health promotion would therefore seem wrong. However, manipulative techniques could be used to counter-manipulation, for example, playing on male fears of impotence to counter ‘smoking is sexy’ advertisements. What difference does it make to the ethics of manipulation when it is counter-manipulation? This article distinguishes two powerful defences of (...) counter-manipulative health promotion: that the counter-manipulation would prevent manipulation occurring, leaving people unmanipulated; and that the counter-manipulation would make people healthier without being any more manipulated than they would otherwise be. The article explains how counter-manipulation might work and the limits to its scope. The upshot is that counter-manipulative health promotion could respect the independence people are owed in virtue of their autonomy. However, autonomy is not the only consideration, and the article discusses further potential problems. Counter-manipulative health promotion might be misapplied, it might undermine trust, it might infringe on some norms for role behaviour and it might encourage a regrettable social practice. These objections are likely to be decisive against the counter-manipulation in some but not all cases. (shrink)

Within the moral/social order maintained and reproduced by biomedical ethics (i.e., the “peaceable community”), suffering is a senseless accident with no value. Insofar as suffering compromises the fundamental pillar of this order, namely, autonomy, it threatens the existence of the “peaceable community”. Consequently, biomedical ethics is only able to offer those who suffer one moral or practical response: that of elimination, embodied most vividly in the increasingly approved practice of assisted-suicide. Another moral/ social order, however, the “peaceable Kingdom” or the (...) “Body of Christ”, provides an alternative understanding of the meaning, purpose, and significance of suffering, through the Roman Catholic sacrament of anointing of the sick. Recognizing the power of sickness and suffering to “dis-inscribe” bodies of their normative self-understandings, the Church responds with a set of liturgical practices which intend to respond to the dynamics of suffering, re-inscribe these bodies, and assist persons in fulfilling the vocation of “participating in Christ's suffering for the salvation of the world”. (shrink)

Purpose. The purpose of this paper is to study the behaviour of women in extreme conditions, to establish various social roles of women, ways of their adaptation to extreme conditions on the example of Ukrainian anti-Nazi underground during Second World War. Theoretical basis. The authors derive from the fact that historical anhropology is a leading and promising area of historical research. Originality. For the first time, the authors have shown that in conditions of constant stress state and direct threat to (...) life and health, the behaviour of underground women was determined by adequate survival strategies, i.e. by the life circumstances and personal qualities of the underground members. Conclusions. Permanent existence on the verge of life and death often led women to emotional actions, deviant forms of behaviour. Their actions could be controversial, and the motives – confusing. At the same time, the majority of women left in the Soviet underground chose as a strategy of survival the path of confrontation with occupiers, held true to their choices, often showed courage, ingenuity and self-sacrifice. (shrink)

I am pleased by the degree of agreement about reasons between the three of us, which is much greater than I might have guessed. I have no objection whatever to the project of giving the kind of psychological description of deliberation about reasons that Gibbard proposes. I agree that “weighing X in favor of A isn’t mysterious,” but I do confess to some doubt about how a psychological description of this process of weighing “explains, indirectly, X’s counting in favor of (...) A in such circumstances.” If there is any disagreement between Gibbard and me on this point, I think it is over the degree to which such an explanation is to be expected. (shrink)

A unifying theory of general anesthetic-induced unconsciousness must explain the common mechanism through which various anesthetic agents produce unconsciousness. Functional-brain-imaging data obtained from 11 volunteers during general anesthesia showed specific suppression of regional thalamic and midbrain reticular formation activity across two different commonly used volatile agents. These findings are discussed in relation to findings from sleep neurophysiology and the implications of this work for consciousness research. It is hypothesized that the essential common neurophysiologic mechanism underlying anesthetic-induced unconsciousness is, as with (...) sleep-induced unconsciousness, a hyperpolarization block of thalamocortical neurons. A model of anesthetic-induced unconsciousness is introduced to explain how the plethora of effects anesthetics have on cellular functioning ultimately all converge on a single neuroanatomic/neurophysiologic system, thus providing for a unitary physiologic theory of narcosis related to consciousness. (shrink)

What if human joy went on endlessly? Suppose, for example, that each human generation were followed by another, or that the Western religions are right when they teach that each human being lives eternally after death. If any such possibility is true in the actual world, then an agent might sometimes be so situated that more than one course of action would produce an infinite amount of utility. Deciding whether to have a child born this year rather than next is (...) a situation wherein an agent may face several alternatives whose effects could well ramify endlessly on such suppositions, for the child born this year would be a different person—one who preferred different things, performed different actions, and had different descendants—from a child born next year. It has recently been suggested that traditional utilitarianism stumbles on such cases of infinite utility. Specifically, utilitarianism seems to require, for its application, that all experience of pleasure and pain cease at some time in the future or asymptotically approach zero.2 If neither of these conditions holds, then the utility produced by each of two alternative actions may turn out to be infinite, and utilitarianism thus loses its ability to discriminate morally between them. (shrink)

BackgroundSystems medicine is the name for an assemblage of scientific strategies and practices that include bioinformatics approaches to human biology ; “big data” statistical analysis; and medical informatics tools. Whereas personalized and precision medicine involve similar analytical methods applied to genomic and medical record data, systems medicine draws on these as well as other sources of data. Given this distinction, the clinical translation of systems medicine poses a number of important ethical and epistemological challenges for researchers working to generate systems (...) medicine knowledge and clinicians working to apply it.DiscussionThis article focuses on three key challenges: First, we will discuss the conflicts in decision-making that can arise when healthcare providers committed to principles of experimental medicine or evidence-based medicine encounter individualized recommendations derived from computer algorithms. We will explore in particular whether controlled experiments, such as comparative effectiveness trials, should mediate the translation of systems medicine, or if instead individualized findings generated through “big data” approaches can be applied directly in clinical decision-making. Second, we will examine the case of the Riyadh Intensive Care Program Mortality Prediction Algorithm, pejoratively referred to as the “death computer,” to demonstrate the ethical challenges that can arise when big-data-driven scoring systems are applied in clinical contexts. We argue that the uncritical use of predictive clinical algorithms, including those envisioned for systems medicine, challenge basic understandings of the doctor-patient relationship. Third, we will build on the recent discourse on secondary findings in genomics and imaging to draw attention to the important implications of secondary findings derived from the joint analysis of data from diverse sources, including data recorded by patients in an attempt to realize their “quantified self.”SummaryThis paper examines possible ethical challenges that are likely to be raised as systems medicine to be translated into clinical medicine. These include the epistemological challenges for clinical decision-making, the use of scoring systems optimized by big data techniques and the risk that incidental and secondary findings will significantly increase. While some ethical implications remain still hypothetical we should use the opportunity to prospectively identify challenges to avoid making foreseeable mistakes when systems medicine inevitably arrives in routine care. (shrink)

Background In 2002, Belgium set a legal framework for euthanasia, whereby granting and performing euthanasia is entrusted entirely to physicians, and—as advised by Belgian Medical Deontology—in the context of a trusted patient–physician relationship. Euthanasia is, however, rarely practiced, so the average physician will not attain routine in this matter. Aim To explore how general practitioners in Flanders (Belgium) deal with euthanasia. This was performed via qualitative analysis of semistructured interviews with 52 general practitioners (GPs). Results Although GPs can understand a (...) patient's request for euthanasia, their own willingness to perform it is limited, based on their assumption that legal euthanasia equates to an injection that ends life abruptly. Their willingness to perform euthanasia is affected by the demanding nature of a patient's request, by their views on what circumstances render euthanasia legitimate and by their own ability to inject a lethal dose. Several GPs prefer increasing opioid dosages and palliative sedation to a lethal injection, which they consider to fall outside the scope of euthanasia legislation. Conclusions Four attitudes can be identified: (1) willing to perform euthanasia; (2) only willing to perform as a last resort; (3) feeling incapable of performing; (4) refusing on principle. The situation where GPs have to consider the request and—if they grant it—to perform the act may result in arbitrary access to euthanasia for the patient. The possibility of installing transparent referral and support strategies for the GPs should be further examined. Further discussion is needed in the medical profession about the exact content of the euthanasia law. (shrink)

Several commentators have noted that “justice has not fared well in the revival of virtue ethics”; it “has become damagingly marginalized” and “no longer has a starring role.” Given its traditional place among the four cardinal virtues this is a remarkable state of affairs and yet exactly this has occurred has not been adequately explored or explained. In this paper, I argue that the particular moral virtue of justice has been largely disregarded by the contemporary virtue theorists primarily because their (...) conception of justice is so different from Aristotle’s. Accordingly, they do not need the virtue of justice to do the kind of explanatory work in their systems that it does in Aristotle’s. (shrink)

There are many ways of enhancing human performance. For military aviation in general, and for spaceflight in particular, the most important tools are selection, training, equipment, pharmacology, and surgery. In the future, genetic manipulation may be feasible. For each of these tools, the specific modalities available range from the ethically acceptable to the ethically unacceptable. Even when someone consents to a particular procedure to enhance performance, the action may be ethically unacceptable to society as a whole and the burden of (...) risk for the individual may be too great. In addition, there are several characteristics that define the quality and the acceptability of the consent. Each method of enhancing performance will be examined in the context of the principles of medical ethics in a western society: autonomy, non-maleficence, beneficence, and justice. The aim is to draw the attention of aeromedical practitioners to the complexities of ethical dilemmas such as this particular one in order to help them to develop a morally justifiable code of practice that balances society’s needs against individual ambitions and corporate goals. (shrink)

Paternalist policies in public health often aim to improve people’s well-being by reducing their options, regulating smoking offering a prime example. The well-being challenge is to show that people really are better off for having their options reduced. The distribution challenge is to show how the policies are justified since they produce losers as well as winners. If we start from these challenges, we can understand the importance of the empirical evidence that a very high proportion of smokers regret smoking. (...) In short, it is important that they regret it and important that the proportion is so high. This paper explains how, philosophically, regret can relate to well-being and it considers some of the strengths and weakness in the empirical research that the explanation brings out. The regret case for regulating smoking is indeed strong, although not as strong as the empirical researchers think. It is much weaker for paternalistic intervention in other public health problems, such as obesity and binge drinking. (shrink)

It is claimed by the future like ours anti-abortion argument that since killing adult humans is wrong because it deprives them of a future of value and the fetus has a future of value, killing fetuses is wrong in the same way that killing adult human beings is wrong. In The morality of abortion and the deprivation of futures (this journal, April 2000) I argued that the persuasive power of this argument rests upon an equivocation on the term “future of (...) value”. If the expression means “a potential future of value” then the moral claim is implausible because people do not in general have rights to what they need to fulfill their potential; if the expression means “self-represented future of value” then the argument fails because the fetus does not represent its future. Under no interpretation is the argument sound. In Deprivations, futures and the wrongness of killing (this journal, December 2001) Donald Marquis, author of the future like ours argument, responds at length to this objection. In the present essay the focus of the debate shifts to the proper interpretation of the right not to be killed. Donald Marquis argues that this liberty right entails the welfare right to the means necessary to sustain life; I argue that the right not to be killed does not entail unlimited welfare rights. On Marquis's view, the right not to be killed confers upon the fetus the right to whatever it takes to sustain life; on the view I defend, the right not to be killed does not confer upon the fetus or anyone else the right to another person's body. On Marquis's view, abortion is almost never permissible; on my view abortion is almost always permissible. (shrink)

If in the context of early and classical Greek thought, the term “theology” is taken to mean “of God/gods/the gods and his/their putative relationship, causal and directive, to the world and its operations, and to ourselves within that world,” or something of that order, the first ascription of such a notion to a Presocratic philosopher is to be found in Aristotle's comment that “Thales thought that all things are full of gods”. The Presocratic period ends with no neat causal sequence. (...) If one train of thinking was moving in the direction of a divinely guided, teleologically explicable universe, another was moving in exactly the opposite direction. For the atomists Democritus and Leucippus, the ever-changing universe is an infinity of space in which, across eternity, chance agglomerations of ever-moving atoms produce and will forever go on producing those contents of the universe that we call realities, from gazelles to galaxies. (shrink)