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)

BackgroundSevere brain injury is a leading cause of death and disability. Diagnosis and prognostication are difficult, and errors occur often. Novel neuroimaging methods can improve diagnostic and prognostic accuracy, especially in patients with prolonged disorders of consciousness (PDoC). Yet it is currently unknown how family caregivers understand this information, raising ethical concerns that disclosure of neuroimaging results could result in therapeutic misconception or false hope.MethodsTo examine these ethical concerns, we conducted semi-structured interviews with caregivers of patients with PDoC who were (...) enrolled in a concurrent neuroimaging research program designed to detect covert consciousness following severe brain injury. Caregivers held surrogate decision-making status for a patient. Interviews were conducted at two time points for each caregiver. The first interview occurred before the disclosure of neuroimaging results. The second occurred after disclosure. Descriptive analysis was applied to the data of four interview topics: (1) expectations for neuroimaging; (2) reactions to evidence of preserved cognition; (3) reactions to null results; and (4) understanding of the results and study.ResultsTwelve caregivers participated in the study; two caregivers shared surrogate decision-making status for one patient with PDoC. Twenty-one interviews were completed; one caregiver declined to participate in the post-disclosure interview. Three patients with PDoC associated with the study displayed evidence of covert consciousness. Overall, caregivers understood the neuroimaging research and results. Caregivers who received results of covert consciousness were generally pleased. However, there was some variation in expectations and reactions to these data and null results.ConclusionThis study, for the first time, reveals caregiver expectations for and reactions to neuroimaging evidence of covert consciousness in patients with PDoC. Caregivers understood the neuroimaging research and results, casting doubt on speculative ethical concerns regarding therapeutic misconception and false hope. However, disclosure of neuroimaging result could be improved. Pre-disclosure consultations might assist professionals in shaping caregiver expectations. Standardization of disclosure might also improve comprehension of the results. (shrink)

This editorial to the special issue addresses the often overlooked question of the ethical nature of social enterprises. The emerging social entrepreneurship literature has previously been dominated by enthusiasts who fail to critique the social enterprise, focusing instead on its distinction from economic entrepreneurship and potential in solving social problems. In this respect, we have found through the work presented herein that the relation between social entrepreneurship and ethics needs to be problematized. Further, we find that a range of conceptual (...) lenses and methodological approaches is valuable as the social entrepreneurship field matures. (shrink)

The concept of vulnerability is widely used in bioethics, particularly in research ethics and public health ethics. The traditional approach construes vulnerability as inherent in individuals or the groups to which they belong and views vulnerability as requiring special protections. Florencia Luna and other bioethicists continue to challenge traditional ways of conceptualizing and applying the term. Luna began proposing a layered approach to this concept and recently extended this proposal to offer two new concepts to analyze the concept of vulnerability, (...) namely understanding external conditions that trigger vulnerability and layers of vulnerability with cascading effects. Luna's conception of vulnerability is useful, which we demonstrate by applying her layered view and the new analyses in multiple contexts. We begin by outlining Luna's view and we use vignettes from healthcare involving transgender patients, the care of patients in psychiatric contexts, and research involving prisoners to illustrate how each part of Luna's concept elucidates important moral issues. (shrink)

This book is composed of research presented at the fourth international Queering Paradigms Conference (QP4), held in Rio de Janeiro, Brazil. It intends to contribute to building a queer postcolonial critique of the current politics of queer activism and of queer knowledge production and circulation.

Queering Paradigms IVa: Insurgências queer ao Sul do equador, junto com o volume Queering Paradigms IV: South-North Dialogues on Queer Epistemologies, Embodiments and Activisms (Lewis et al. 2014), divulga de forma multilíngue pesquisas apresentadas no 4° Congresso Internacional Queering Paradigms (QP4), sediado no Rio de Janeiro, Brasil. Ambos os volumes compartilham o objetivo de analisar o status quo e os desafios para o futuro dos Estudos Queer a partir de uma perspectiva inter/multidisciplinar, concentrando-se sobre as relações entre os eixos Sul-Norte. (...) O presente livro oferece capítulos escritos em português e espanhol, línguas subalternas na academia global, visando a privilegiar vozes e conhecimentos do Sul. Os trabalhos reunidos neste volume insurgem contra a colonização epistemológica dos corpos que habitam o Sul global e apontam para os problemas que surgem quando a(s) Teoria(s) Queer do Norte são aplicadas sem adaptação a outros contextos. Além de violências epistemológicas, a falta de atenção ao que acontece ao sul do equador pode levar a uma paralização do debate queer. O convite que esses capítulos fazem é um desafio a olhar para onde não se costuma olhar e ouvir as vozes que não se costuma ouvir, de forma a devolver ao queer seu potencial de contestação. Queering Paradigms IVa: Insurgências queer ao Sul do equador, junto con el tomo Queering Paradigms IV: South-North Dialogues on Queer Epistemologies, Embodiments and Activisms (Lewis et al. 2014), difunde de forma multilingüe algunas de las investigaciones presentadas en el 4o Congreso Internacional Queering Paradigms (QP4), en Río de Janeiro, Brasil. Ambos tomos comparten el objetivo de analizar el estado actual y los desafíos para el futuro de los Estudios Queer desde una perspectiva inter/multidisciplinaria, concentrándose sobre las relaciones entre el eje Sur-Norte. El presente libro ofrece capítulos escritos en portugués y español, lenguas subalternas en la academia global, con la pretensión de privilegiar voces y conocimientos del Sur. Los trabajos reunidos en este tomo se insurgen contra la colonización epistemológica de los cuerpos que habitan el Sur global y apuntan a los problemas que surgen cuando la(s) Teoría(s) Queer del Norte son aplicadas sin adaptación a otros contextos. Además de las violencias epistemológicas, la falta de atención a lo que acontece al sur del Ecuador puede llevar a una paralización del debate queer. La propuesta de estos capítulos es un desafío a mirar para dónde no se suele mirar y a escuchar las voces que no se suelen escuchar, para devolverle al queer su potencial de contestación. (shrink)

Background: Caregivers and administrators in long-term facilities have fragile moral work in caring for residents with dementia. Residents are susceptible to barriers and vulnerabilities associated with the most intimate aspects of their lives, including how they express themselves sexually. The conditions for sexual agency are directly affected by caregivers’ perceptions and attitudes, as well as facility policies. Objective: This article aims to clarify how to approach capacity determinations as it relates to sexual activity, propose how to theorize about patient autonomy (...) in this context, and suggest some considerations for finding an ethically responsible and practically feasible way to respect the sexual rights of this population. Research Design: The focus is on residents with early to moderate dementia in states of daily dependency on professional caregivers. The article critically examines existing empirical research on sexuality among persons with dementia, caregivers’ attitudes, and institutional roadblocks to enabling residents’ sexuality. A relational lens and insights from disability studies are used in the philosophical analysis. Participants and Research Context: No research participants were part of this analysis. Ethical Considerations: This article offers a conceptual analysis and normative framework only. Findings: The analysis highlights the delicate balance that capacity assessments for sexual activity have to strike; while caregivers should protect those who cannot give adequate consent, the denial of sexuality among residents can cause deep, long-ranging harms. Sexual agency features into an ongoing sense of self for many individuals with dementia, and the imposition of inappropriate standards and expectations for sexual autonomy can lead to unwarranted obstacles to sexual activity. Discussion: Recommendations include developing clear and inclusive institutional policies and practices of care, providing education for caregivers on how to discuss and document residents’ sexual preferences over time, and taking advantage of ethics consultation services. Conclusion: This analysis establishes the need for more research and discussion on this sensitive topic. Future research should investigate the specific responsibilities of caregivers in furthering the sexual interests of residents, how exactly to modify existing capacity instruments, and how best to support historically marginalized patients in their sexual identities. (shrink)

This book offers new essays exploring concepts and applications of nonideal theory in bioethics. Nonideal theory refers to an analytic approach to moral and political philosophy (especially in relation to justice), according to which we should not assume that there will be perfect compliance with principles, that there will be favorable circumstances for just institutions and right action, or that reasoners are capable of being impartial. Nonideal theory takes the world as it actually is, in all of its imperfections. Bioethicists (...) have called for greater attention to how nonideal theory can serve as a guide in the messy realities they face daily. Although many bioethicists implicitly assume nonideal theory in their work, there is the need for more explicit engagement with this theoretical outlook. A nonideal approach to bioethics would start by examining the sociopolitical realities of healthcare and the embeddedness of moral actors in those realities. How are bioethicists to navigate systemic injustices when completing research, giving guidance for patient care, and contributing to medical and public health policies? When there are no good options and when moral agents are enmeshed in their sociopolitical viewpoints, how should moral theorizing proceed? What do bioethical issues and principles look like from the perspective of historically marginalized persons? These are just a few of the questions that motivate nonideal theory within bioethics. This book begins in Part I with an overview of the foundational tenets of nonideal theory, what nonideal theory can offer bioethics, and why it may be preferable to ideal theory in addressing moral dilemmas in the clinic and beyond. In Part II, authors discuss applications of nonideal theory in many areas of bioethics, including reflections on environmental harms, racism and minority health, healthcare injustices during incarceration and detention, and other vulnerabilities experienced by patients from clinical and public health perspectives. The chapters within each section demonstrate the breadth in scope that nonideal theory encompasses, bringing together diverse theorists and approaches into one collection. (shrink)

Current work on hooking up—or casual sexual activity on college campuses—takes an individualistic, “battle of the sexes” approach and underestimates the importance of college as a classed location. The authors employ an interactional, intersectional approach using longitudinal ethnographic and interview data on a group of college women’s sexual and romantic careers. They find that heterosexual college women contend with public gender beliefs about women’s sexuality that reinforce male dominance across both hookups and committed relationships. The four-year university, however, also reflects (...) a privileged path to adulthood. The authors show that it is characterized by a classed self-development imperative that discourages relationships but makes hooking up appealing. Experiences of this structural conflict vary. More privileged women struggle to meet gender and class guidelines for sexual behavior, placing them in double binds. Less privileged women find the class beliefs of the university foreign and hostile to their sexual and romantic logics. (shrink)

At its core, nonideal theory is an attempt not only to address issues of justice, but it also provides us a lens through which we can articulate our limitations as knowers and reasoners, the ways in which we are relational in our autonomy needs, and the ways in which we are deeply dependent upon institutions and social supports for our agency and identities. Bringing this lens into bioethics means shifting our orientation in our scholarship and our practice. This shift will (...) have implications in how bioethical evaluations are taken up and played out in policies, institutional structures that inform the clinical encounter, and avenues for protection and redress for marginalized and vulnerable populations. It will also allow theorists and researchers to interrogate the status quo, revealing how many standard policies and practices are embedded in social and institutional arrangements that privilege the few or are built on exclusionary norms. The path forward, and the aim of this volume, is to extend the scholarship of nonideal approaches to bioethics. The volume is divided into two main parts. The first is focused on philosophically unpacking nonideal theory as an approach in bioethics. The second offers applications of nonideal theory in environmental ethics, healthcare ethics, public heath ethics, and genetic ethics. Our collective aim is to expand what has been considered nonideal bioethics. The history of nonideal theory has as its point of reference a turn away from Rawlsian justice, but the future of nonideal theory is ripe with possibilities. (shrink)

This study used two waves of the National Survey of Families and Households to examine the effect of the transition to parenthood on the division of labor among married couples, hypothesizing that parenthood would produce a more differentiated gender division of labor, but that attitudes and preparental division of labor would moderate parenthood. There were no effects of parenthood nor direct or moderating effects of gender attitudes on husbands' employment or housework hours, with the exception that fathering more than one (...) child results in slightly longer employment hours. Motherhood increases wives' housework hours and reduces employment hours. Wives' traditional gender attitudes reduce their employment, but not their housework. Women married to full-time breadwinners have the largest reductions in employment after motherhood. Last, wives' initial economic dependency increases wives' subsequent housework and husbands' employment. Parenthood crystallizes a gendered division of labor, largely by reshaping wives', not husbands', routine. (shrink)

We argue that we have obligations to future people that are similar in kind to obligations we have to current people. Modifying Michael Bratman’s account, we argue that as planning agents we must plan for the future to act practically in the present. Because our autonomy and selfhood are relational by nature, those plans will involve building affiliative bonds and caring for others. We conclude by grounding responsibility to future others by the way we plan through our social institutions. Our (...) account fills out the story of responsibility to future generations by referring only to ourselves, our practical identities, and practical reason. (shrink)

Although there has been significant attention in clinical ethics to when physicians should follow a parent’s wishes, there has been much less discussion of the obligation to solicit viewpoints and decisions from all caregivers who have equal moral and legal standing in relation to a pediatric patient. How should healthcare professionals respond when one caregiver dominates decision making? We present a case that highlights how these problems played out in an ethical bargain. Ethical bargaining occurs when the parties involved choose (...) not to pursue a morally preferable option for the sake of coming to a resolution. This case is not one of parental disagreement; rather, the medical team agreed to exclude the patient’s mother from decision making if the patient’s father promised to bring their son back to the hospital for necessary medical tests. We argue that there is an obligation to notice and acknowledge power asymmetries in the family unit, which, in this case, was manifested as the marginalization of the female decision maker by the male decision maker. In these scenarios, clinicians should be careful to avoid treating parents as one homogenous unit, and they should take action to enable caregivers’ autonomy and voice. While there are moral and practical limits to how and when physicians should intervene in family dynamics, we discuss the steps that the medical team should have taken in this case to avoid undermining the parental authority of the mother. We conclude by offering recommendations to address and enable caregivers’ autonomy at an institutional level, and we discuss the importance of tracking and responding to damaging family dynamics to prevent ethically impermissible bargaining. (shrink)

Ruminative thinking is considered a vulnerability factor for eating disorder symptomatology. Research suggests that attentional bias to body shape stimuli may serve to underpin this maladaptive for...

The exhibition Space/Sight/Self was designed to study the role of portraiture in contemporary art as a nexus of three issues identity, vision, and place. The goal was to produce a portrait, as it were, of contemporary portraiture. This catalog documents the exhibition and helps to facilitate viewers' reflections and responses about the spaces, sights, and selves that enable us to construct and question our identity.".

In this article, we propose to describe linguistic phenomena which contribute to creating uncertainty in a literary text. In particular, we will analyze different narrative strategies that introduce the sinister (Freud, 1919) into a text which, while being an author’s account, utilizes forms of expression typical of the traditional oral legend “El Monte de las Ánimas” by Gustavo Adolfo Bécquer. The unsettling effect that this legend produces on the reader stems from several phenomena analyzed by literary theory (such as in (...) the study of the Fantasy genre). However, we would like to propose an approach based on some notions from the fields of linguistics and discourse analysis as determining factors in this effect. We will discuss three aspects: the reproduced speech (Maldonado, 2001) or the representation of the speech of others (Authier-Revuz, 2003), the epistemic modality that describes the enunciator’s knowledge regarding the mentioned facts (Nuyts, 2001; García Negroni & Tordesillas Colado, 2001) and the evidential verbs that account for the way the speaker obtains information (Aikhenvald, 2004), especially the cases of transmitted indirect evidence, folklore or popular knowledge (Willett, 1988). In our opinion, the articulation of these three elements constitutes a possible path to describing the aforementioned effect. (shrink)

Despite their diversity and ecological importance, many areas of the SAR—Stramenopila, Alveolata, and Rhizaria—clade are poorly understood as the majority (90%) of SAR species lack molecular data and only 5% of species are from well‐sampled families. Here, we review and summarize the state of knowledge about the three major clades of SAR, describing the diversity within each clade and identifying synapomorphies when possible. We also assess the “dark area” of SAR: the morphologically described species that are missing molecular data. The (...) majority of molecular data for SAR lineages are characterized from marine samples and vertebrate hosts, highlighting the need for additional research effort in areas such as freshwater and terrestrial habitats and “non‐vertebrate” hosts. We also describe the paucity of data on the biogeography of SAR species, and point to opportunities to illuminate diversity in this major eukaryotic clade. (shrink)

Despite their diversity and ecological importance, many areas of the SAR—Stramenopila, Alveolata, and Rhizaria—clade are poorly understood as the majority of SAR species lack molecular data and only 5% of species are from well-sampled families. Here, we review and summarize the state of knowledge about the three major clades of SAR, describing the diversity within each clade and identifying synapomorphies when possible. We also assess the “dark area” of SAR: the morphologically described species that are missing molecular data. The majority (...) of molecular data for SAR lineages are characterized from marine samples and vertebrate hosts, highlighting the need for additional research effort in areas such as freshwater and terrestrial habitats and “non-vertebrate” hosts. We also describe the paucity of data on the biogeography of SAR species, and point to opportunities to illuminate diversity in this major eukaryotic clade. See also the video abstract here: https://youtu.be/_VUXqaX19Rw. Despite their diversity, abundance, and importance, fewer than 10% of the species within the SAR—Stramenopila, Alveolata, and Rhizaria—clade have been assessed using molecular tools. Only a small percentage of the molecular records contain information on ecology or have associate location data, indicating a tremendous dark area. (shrink)

In an effort to address healthcare disparities in lesbian, gay, bisexual, transgender, and queer populations, many hospitals and clinics institute diversity training meant to increase providers’ awareness of and sensitivity to this patient population. Despite these efforts, many healthcare spaces remain inhospitable to LGBTQ patients and their loved ones. Even in the absence of overt forms of discrimination, LGBTQ patients report feeling anxious, unwelcome, ashamed, and distrustful in healthcare encounters. We argue that these negative experiences are produced by a variety (...) of subtle, ostensibly insignificant features of healthcare spaces and interpersonal interactions called microaggressions. Healthcare spaces and providers often convey heteronormative microaggressions, which communicate to LGBTQ—and, we suggest, intersex and asexual —people that their identities, experiences, and relationships are abnormal, pathological, unexpected, unwelcome, or shameful. We identify heteronormative microaggressions common to healthcare settings and specify how they negatively impact LGBTQIA patients. We argue that standard diversity training cannot sufficiently address heteronormative microaggressions. Despite these challenges, healthcare institutions and providers must take responsibility for heteronormative microaggressions and take steps to reduce their frequency and mitigate their effects on LGBTQIA care. We conclude by offering strategies for problem-solving at the level of medical education, institutional culture and policy, and individual awareness. (shrink)

8 March, now known as International Women’s Day, is a day for feminist claims where demonstrations are organized in over 150 countries, with the participation of millions of women all around the world. These demonstrations can be viewed as collective rituals and thus focus attention on the processes that facilitate different psychosocial effects. This work aims to explore the mechanisms involved in participation in the demonstrations of 8 March 2020, collective and ritualized feminist actions, and their correlates associated with personal (...) well-being and collective well-being, collective efficacy and collective growth, and behavioral intention to support the fight for women’s rights. To this end, a cross-cultural study was conducted with the participation of 2,854 people from countries in Latin America and Europe, with a retrospective correlational cross-sectional design and a convenience sample. Participants were divided between demonstration participants and non-demonstrators or followers who monitored participants through the media and social networks. Compared with non-demonstrators and with males, female and non-binary gender respondents had greater scores in mechanisms and criterion variables. Further random-effects model meta-analyses revealed that the perceived emotional synchrony was consistently associated with more proximal mechanisms, as well as with criterion variables. Finally, sequential moderation analyses showed that proposed mechanisms successfully mediated the effects of participation on every criterion variable. These results indicate that participation in 8M marches and demonstrations can be analyzed through the literature on collective rituals. As such, collective participation implies positive outcomes both individually and collectively, which are further reinforced through key psychological mechanisms, in line with a Durkheimian approach to collective rituals. (shrink)

ABSTRACTEmotion regulation substantially develops during the childhood years. This growth includes an increasing awareness that certain ER strategies are more appropriate in some contexts than...

The covert administration of medication occurs with incapacitated patients without their knowledge, involving some form of deliberate deception in disguising or hiding the medication. Covert medication in food is a relatively common practice globally, including in institutional and homecare contexts. Until recently, it has received little attention in the bioethics literature, and there are few laws or rules governing the practice. In this paper, we discuss significant, but often overlooked, ethical issues related to covert medication in food. We emphasise the (...) variety of ways in which eating has ethical importance, highlighting what is at risk if covert administration of medication in food is discovered. For example, losing trust in feeders and food due to covert medication may risk important opportunities for identity maintenance in contexts where identity is already unstable. Since therapeutic relationships may be jeopardised by a patient’s discovery that caregivers had secretly put medications in their food, this practice can result in an ongoing deception loop. While there may be circumstances in which covert medication is ethically justified, given a lack of suitable alternatives, we argue that in any particular case this practice should be continually re-evaluated in light of the building moral costs to the relational agent over time. (shrink)

How can social institutions complicate and worsen vulnerabilities of particular individuals or groups? We begin by explicating how certain diagnoses within mental health and medicine operate as interactive kinds of labels and how such labels can create institutional barriers that hinder one's capacity to achieve wellbeing. Interactive-kind modeling is a conceptual tool that elucidates the ways in which labeling can signal to others how the labeled person ought to be treated, how such labeling comes about and is perceived, and how (...) it compounds vulnerabilities. We argue that this shift in standpoint helps us recognize and mitigate compounded vulnerabilities. (shrink)

In philosophy of religion, there are few more frequently visited topics than the problem of evil, which has attracted considerable interest since the time of Epicurus. It is well known that the problem of evil involves responding to the apparent tension between 1) belief in the existence of a good, all powerful, all knowing God and 2) the existence of evil—such as personal suffering embodied in the experience of cancer. While a great deal has been written concerning abstract philosophical theories (...) that academics use to explain the existence of evil, much less has been written about how religious lay people make sense of evil and suffering. What explanations, meanings, and perceptions do they hold concerning the religious significance of evil? What can theologians and philosophers learn from these lay experiences? Our interdisciplinary team designed an experiment to identify the religious significance that personal suffering held for a group of religious cancer sufferers. We interviewed twenty-nine self-identified evangelical Christians who had received a cancer diagnosis at some point in their lives for our experiment. Since all interviewees identified as Christians, it was expected that they would assent to belief in a theistic God. It was also expected that each interviewee would assent the existence of evil and see their cancer experience as a dramatic and personal instance of an evil event. The explicit existential threat of cancer guarantees that the individual has much at stake in the experience. Furthermore, the pain and suffering that typically accompanies either the cancer itself or cancer treatments make it a compelling example of evil experienced in a very personal way. Finally, even when successfully treated, the ongoing threat of potentially fatal recurrence looms over the sufferer for years to come. We asked 17 questions related to the religious significance of their cancer experience in each interview and coded these interviews looking for five distinct types of explanations for/meaning of evil: trusting God in mystery, free will, moral development, spiritual growth, and growth in human relationships/community. These categories were meant to correspond loosely to five philosophical responses to the existence of evil.Our interviews included several important results. First, 79% of interviewees had at least one answer that fit into the ‘trust God in mystery’ category of responses with 48% using this category of responses as their most frequently cited theme. This result could be interpreted as a kind of generic theodical response: God has a good, but unknown reason for allowing evil/suffering. Alternatively, another possible interpretation is that at least some of these interviewees intuited something similar to skeptical theism, since it claims that if one understands the type of God proposed by theism and possesses an accurate view of human cognitive capacities, it is apparent that there is no real tension to be resolved between theism and the existence of evil. Some of our interviewees seemed to believe not only that the answer to why evil exists is mysterious, but that they simply could not have the necessary perspective to judge what kinds of purposes God might have for allowing this painful episode in their lives.While it was unsurprising that religious sufferers would find it important to trust God in ambiguous difficult circumstances, more surprisingly, we found that 52% of our respondents did not judge that their cancer experience was at all in tension with their religious beliefs. Whereas a broad range of philosophers and theologians acknowledge that there is at least an apparent conflict between the existence of a good, all-powerful God and the existence of evil, most of our interviewees did not even perceive an apparent tension between theistic beliefs and their painful cancer experiences that would be in need of additional reconciliation.There are at least two ways this result might be interpreted. First, our interviewees might hold additional beliefs that make the existence of evil easier for them to accept. After all, these interviewees were not ‘bare theists’ who held only to the existence of God, but presumably held a broad range of religious beliefs which may already serve to reconcile the existence of evil: that growing closer to God is more important than earthly life itself, that in evil in this life allows us a greater appreciation of a blessed eternity, or simply that ‘God works for our good in mysterious ways.’ Thus, a fully developed Christian worldview may already accommodate the existence of evil in a way not fully appreciated by philosophers.Another possible interpretation is that at least some of our interviewees were not adequately reflective to perceive the tension between their religious beliefs and their experience of suffering. There is at least some reason to doubt this explanation as an overarching interpretation of this result since our interviewees were generally well educated with the median participant holding at least a Bachelor’s degree, and most were ongoing participants in a cancer support group ensuring long-term ongoing engagement with their cancer experience.A final significant finding is that a high portion of our interviewees, 83% reported specific examples of beneficial personal growth—moral, spiritual, or relational— that resulted from their cancer experience. When asked about their cancer experience’s broad effect upon their lives in these areas they volunteered at least one example of a benefit they received in these areas. Depending on one’s accompanying value theory and whether such benefits might have been otherwise achieved, they might provide a morally sufficient reason for the existence of suffering. Our interviewees frequently described experiencing the kind of benefits at the heart of John Hick’s soul making theodicy and Eleonore Stump’s ‘spiritual growth’ theodicy, providing at least some corroborating evidence for such views. Experiences common to our interviewees were similar to what such theodicies would predict. (shrink)

A new Clinical Ethics Advisory Group was created to contribute to NHS Trust policies and guidelines in response to ethical issues arising from the COVID-19 pandemic. An ethical analysis framework used in medical education, the CoRE-Values Compass and Grid, was adapted to form a step-wise ‘ABC’ decision-making process. CEAG members found the framework simple to understand and use and the model facilitated time-efficient decisions that were explicitly justifiable on moral, ethical, professional and legal grounds. The adapted CoRE-Values framework might help (...) facilitate decision-making processes for similar new clinical ethics advisory or support committees. (shrink)

The OpenNotes (ON) mandate in the 21st Century Cures Act requires that patients or their legally authorized representatives be able to access their medical information in their electronic medical record (EMR) in real time. Ethics notes fall under the domain of this policy. We argue that ethics notes are unique from other clinical documentation in a number of ways: they lack best-practice guidelines, are written in the context of common misconceptions surrounding the purpose of ethics consultation, and often answer questions (...) of a different nature than other documentation. Thus, we believe the clinical ethics community would benefit from clarification on when the withholding of ethics notes is justified. We provide recommendations for excluding information from ethics documentation based on the likelihood and magnitude of harm that may occur with particular disclosures and suggest approaches to decrease the potential harms that may occur. We define and explain six types of reasons to exclude information from ethics notes based on significant harms that are not addressed in the ON policy: (1) harmful revelations from a protected chart note; (2) negative emotional effects on patients or families; (3) the purpose of the consultation is undermined by harmful consequences; (4) avoidable negative impact on interpersonal dynamics; (5) inappropriate labeling or disclosure of medical, social, or financial information; and (6) inclusion of biasing or otherwise unfair information. We also suggest approaches to mitigate harm when excluding, including, reframing, or delaying release of information that is perceived to be relevant to an ethics case. Overall, we hope our analysis and recommendations will initiate a much-needed discussion about the impact of the ON mandate on clinical ethics documentation. (shrink)

Scientists, clinicians, and bioethicists are worried about how so‐called personhood measures would limit access to certain types of contraception, research involving stem cells, and access to fertility treatments. While these measures have been struck down in Colorado, South Dakota, California, and Mississippi, the bill signed into law in Oklahoma in February deserves critical scrutiny, particularly into the ways these legal measures influence eligibility for clinical research. Oklahoma's bill states that the laws of the state “shall be interpreted and construed to (...) acknowledge on behalf of the unborn child at every stage of development all the rights, privileges, and immunities available to other persons, citizens, and residents of this state.”. (shrink)

Peer review is a widely accepted instrument for raising the quality of science. Peer review limits the enormous unstructured influx of information and the sheer amount of dubious data, which in its absence would plunge science into chaos. In particular, peer review offers the benefit of eliminating papers that suffer from poor craftsmanship or methodological shortcomings, especially in the experimental sciences. However, we believe that peer review is not always appropriate for the evaluation of controversial hypothetical science. We argue that (...) the process of peer review can be prone to bias towards ideas that affirm the prior convictions of reviewers and against innovation and radical new ideas. Innovative hypotheses are thus highly vulnerable to being “filtered out” or made to accord with conventional wisdom by the peer review process. Consequently, having introduced peer review, the Elsevier journal Medical Hypotheses may be unable to continue its tradition as a radical journal allowing discussion of improbable or unconventional ideas. Hence we conclude by asking the publisher to consider re-introducing the system of editorial review to Medical Hypotheses. (shrink)

The Canadian province of Ontario introduced philosophy as a secondary school subject in 1995 (Pinto, McDonough, & Boyd, 2009). Since publicly-funded Catholic schools teach approximately 32% of all students in Ontario (Ontario Ministry of Education, 2022), the question arises regarding how teachers in those schools coordinate philosophy and Catholic teachings. This study employs a secondary analysis of interviews with six teachers from Ontario’s Catholic schools, and employs two of Avery Dulles’ (2002) conceptions of church (institution and mystical communion) to (...) determine how they consider the choices available within their own tradition that could answer this question. Rather than looking only at the shortcomings of treating magisterial teaching as philosophy, this paper argues that there are also conceptual problems that these courses must address in order to improve their ecclesiological adequacy, and illustrates how an apparent null curriculum privileges the institutional ecclesiology. (shrink)

Canada is an immigrant‐receiving nation and many graduate students in nursing and other disciplines pursue immigrant health research. As these students often start with inadequate understanding of the policy, theoretical, and research contexts in which their work should be situated, we became concerned that the theses and dissertations were less sophisticated than were both possible and desirable. This led to development of a PhD‐level course titled Migration and Health in the Canadian Context. In this study, we provide an analytic overview (...) including course description, objectives, assignments, and specific class topics. Areas of focus include historical and theoretical considerations; determinants of immigrant health; refugee health; cultural competence and cultural safety; research challenges, approaches, and skills; policy‐relevant research; and educational imperatives in the health and related disciplines. Salient research is introduced in each of these classes. While Canada is the main focus, comparative data are provided and there is relevance for nurse‐researchers in other immigrant‐receiving countries. (shrink)

BackgroundBiobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people’s (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.MethodsWe designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent at age of capacity. The survey was disseminated (...) via the Young Person’s Advisory Group North England (YPAGne) and participating CYP’s secondary schools. Data were analysed using a qualitative thematic approach by three independent reviewers (including CYP) to identify common themes. Data triangulation occurred independently by a fourth reviewer.ResultsOne hundred two CYP completed the survey. Most were between 16–18 years (63.7%, N = 65) and female (66.7%, N = 68). 72.3% had no prior knowledge of biobanking (N = 73).Acceptability of prospective consent for biobanking was high (91.2%, N = 93) with common themes: ‘altruism’, ‘potential benefits outweigh individual risk’, 'frugality', and ‘(in)convenience’.Deferred consent was also deemed acceptable in the large majority (84.3%, N = 86), with common themes: ‘altruism’, ‘body integrity’ and ‘sample frugality’. 76.5% preferred to reconsent when cognitively mature enough to give assent (N = 78), even if parental consent was previously in place. 79.2% wanted to be informed if their biobanked biospecimen is reused (N = 80).ConclusionProspective and deferred consent acceptability for biobanking is high among CYP in the UK. Altruism, frugality, body integrity, and privacy are the most important themes. Clear communication and justification are paramount to obtain consent. Any CYP with capacity should be part of the consenting procedure, if possible. (shrink)

Yarkoni's analysis clearly articulates a number of concerns limiting the generalizability and explanatory power of psychological findings, many of which are compounded in infancy research. ManyBabies addresses these concerns via a radically collaborative, large-scale and open approach to research that is grounded in theory-building, committed to diversification, and focused on understanding sources of variation.

The COVID‐19 pandemic has placed extraordinary stress on frontline healthcare providers as they encounter significant challenges and risks while caring for patients at the bedside. This study used qualitative research methods to explore nurses and respiratory therapists' experiences providing direct care to COVID‐19 patients during the first surge of the pandemic at a large academic medical center in the Northeastern United States. The purpose of this study was to explore their experiences as related to changes in staffing models and to (...) consider needs for additional support. Twenty semi‐structured interviews were conducted with sixteen nurses and four respiratory therapists via Zoom or by telephone. Interviews were transcribed verbatim, identifiers were removed, and data was coded and analyzed thematically. Five major themes characterize providers' experiences: a fear of the unknown, concerns about infection, perceived professional unpreparedness, isolation and alienation, and inescapable stress and distress. This manuscript analyzes the relationship between these themes and the concept of moral distress and finds that some, but not all, of the challenges that providers faced during this time align with previous definitions of the concept. This points to the possibility of broadening the conceptual parameters of moral distress to account for providers' experiences of treating patients with novel illnesses while encountering institutional and clinical challenges. (shrink)