Thinking of AIDS as an 'emerging disease' inevitably raises questions of comparison. In the United States, we see three main phases in understanding AIDS, with each having very different implications for health and social policy. In the first, AIDS was conceived of as an epidemic disease, a 'gay plague', by analogy to the sudden, devastating epidemics of the past. In the second, it was normalized as a chronic disease, similar in many ways to diseases such as cancer. In (...) the third, we outline a new understanding of AIDS as a slow-moving, long-lasting pandemic, a chronic infectious ailment manifested through myriad specific HIV-related diseases. This new paradigm emphasizes, like the plague model, the etiology, transmission, and prevention of disease; like the chronic disease model, it is concerned with the clinical management of protracted illness. We do criticize, however, both the infectious and chronic disease models for their individualistic conceptions of disease and their narrow strategies for disease prevention. We further suggest that the traditional distinction between, and approaches to, infectious and chronic diseases are problematic and need to be rethought for AIDS and other diseases. (shrink)

In long Midwestern winters, two things are certain: snow and basketball. But two things that you cannot count on are snow day school closures and a home-team collegiate basketball championship. In Kansas last winter, we had both. Winter precipitation was much above average, resulting in a rare invocation of the University's inclement weather policy to cancel classes in early February. And the Kansas Jayhawks basketball team brought home the National Collegiate Athletic Association championship trophy for the first time in (...) two decades. The Chancellor commemorated the achievement with a campuswide celebration, including all-day class cancellation. This is all well and good. I am all for respecting Mother Nature's forces and celebrating remarkable athletic accomplishments.But the combination of events does leave law professors nearing the end of the semester in a bit of a quandary. How to make up the cancelled classes to ensure compliance with American Bar Association accreditation instructional hours requirements? How to cover the missed course content? How to find mutually agreeable make-up class times and locations with a group of busy, upper-level law students? (shrink)

In long Midwestern winters, two things are certain: snow and basketball. But two things that you cannot count on are snow day school closures and a home-team collegiate basketball championship. In Kansas last winter, we had both. Winter precipitation was much above average, resulting in a rare invocation of the University's inclement weather policy to cancel classes in early February. And the Kansas Jayhawks basketball team brought home the National Collegiate Athletic Association championship trophy for the first time in (...) two decades. The Chancellor commemorated the achievement with a campuswide celebration, including all-day class cancellation. This is all well and good. I am all for respecting Mother Nature's forces and celebrating remarkable athletic accomplishments.But the combination of events does leave law professors nearing the end of the semester in a bit of a quandary. How to make up the cancelled classes to ensure compliance with American Bar Association accreditation instructional hours requirements? How to cover the missed course content? How to find mutually agreeable make-up class times and locations with a group of busy, upper-level law students? (shrink)

This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law and medicine, (...) truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (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)

The transformation of health-care delivery from fee-for-service medicine to managed care represents a fundamental philosophical shift away from the prevailing medical ethos that the needs of the individual patient take precedence over competing social values, such as reducing health-care costs. In managed care, financial incentives to reduce health-care utilization may result in denying an individual’s claim for medical services.Litigation challenging managed care’s resource allocation decisions often presents the need to resolve conflicting social policy goals, such as (...) the tension between an individual patient’s access to health care and a managed care organization’s need to restrain costs. Conflicts may arise when a patient’s desire for unconstrained health care clashes with a provider’s and an insurer’s cost containment strategies. In turn, cost containment strategies may raise questions about restrictions on physician autonomy and conflicts among stakeholders for control over resource allocation decisions. (shrink)

The transformation of health-care delivery from fee-for-service medicine to managed care represents a fundamental philosophical shift away from the prevailing medical ethos that the needs of the individual patient take precedence over competing social values, such as reducing health-care costs. In managed care, financial incentives to reduce health-care utilization may result in denying an individual’s claim for medical services.Litigation challenging managed care’s resource allocation decisions often presents the need to resolve conflicting social policy goals, such as (...) the tension between an individual patient’s access to health care and a managed care organization’s need to restrain costs. Conflicts may arise when a patient’s desire for unconstrained health care clashes with a provider’s and an insurer’s cost containment strategies. In turn, cost containment strategies may raise questions about restrictions on physician autonomy and conflicts among stakeholders for control over resource allocation decisions. (shrink)

Since its formation in 1947, the World Medical Association (WMA) has been a leading voice in international medical ethics. The WMA’s principal ethics activity over the years has been policy development on a wide variety of issues in medical research, medical practice and health care delivery. With the establishment of a dedicated Ethics Unit in 2003, the WMA’s ethics activities have intensified in the areas of liaison, outreach and product development. Initial priorities for the Ethics Unit have been (...) the review of paragraph 30 of the Declaration of Helsinki, the expansion of the Ethics Unit section of the WMA website and the development of an ethics manual for medical students everywhere. (shrink)

This handbook presents up-to-date theoretical analyses of problems associated with the moral standing of future people in current decision-making. Future people pose an especially hard problem for our current decision-making, since their number and their identities are not fixed but depend on the choices the present generation makes. Do we make the world better by creating more people with good lives? What do we owe future generations in terms of justice? Such questions are not only philosophically difficult and important, but (...) also directly relevant to many practical decisions and policy issues, including on climate, health, population control and taxation. If we are to adequately assess such issues, we must be able to determine the value of differently sized populations. The aim of this handbook is to shed light on the value of population change and the nature of our obligations to future generations, and to offer practical guidance to policy-makers as to how our duties to future generations should be discharged. It contains an extensive and accessible introduction for those unfamiliar with the topic of population ethics as well as original work from key figures in academic debates on population ethics covering three main themes: ways out of the paradoxes of population ethics, questioning some philosophical and methodological assumptions underlying these paradoxes, and several applications of population ethics to real world issues. (shrink)

"Kevin Hart and Geoffrey H. Hartman bring together essays by prominent scholars from a range of disciplines to focus on Blanchot's diverse concerns: literature, art, community, politics, ethics, spirituality, and the Holocaust."--Jacket.

Did Chinese mysticism vanish after its first appearance in ancient Taoist philosophy, to surface only after a thousand years had passed, when the Chinese had adapted Buddhism to their own culture? This first integrated survey of the mystical dimension of Taoism disputes the commonly accepted idea of such a hiatus. Covering the period from the Daode jing to the end of the Tang, Livia Kohn reveals an often misunderstood Chinese mystical tradition that continued through the ages. Influenced by but ultimately (...) independent of Buddhism, it took forms more various than the quietistic withdrawal of Laozi or the sudden enlightenment of the Chan Buddhists. On the basis of a new theoretical evaluation of mysticism, this study analyzes the relationship between philosophical and religious Taoism and between Buddhism and the native Chinese tradition. Kohn shows how the quietistic and socially oriented Daode jing was combined with the ecstatic and individualistic mysticism of the Zhuangzi, with immortality beliefs and practices, and with Buddhist insight meditation, mind analysis, and doctrines of karma and retribution. She goes on to demonstrate that Chinese mysticism, a complex synthesis by the late Six Dynasties, reached its zenith in the Tang, laying the foundations for later developments in the Song traditions of Inner Alchemy, Chan Buddhism, and Neo-Confucianism. (shrink)

The Dynamics of Social Practice -- Introducing Theories of Practice -- Materials and Resources -- Sequence and Structure -- Making and Breaking Links -- Material, Competence and Meaning -- Car-Driving: Elements and Linkages Making Links -- Breaking Links -- Elements Between Practices -- Standardization and Diversity -- Individual and Collective Careers -- The Life of Elements -- Modes of Circulation -- Transportation and Access: Material -- Abstraction, Reversal and Migration: Competence -- Association and Classification: Meaning -- Packing and Unpacking -- (...) Emergence, Disappearance and Persistence -- Recruitment, Defection and Reproduction -- First Encounters: Networks and Communities -- Capture and Commitment: Careers and Carriers -- Collapse and Transformation: The Dynamics of Defection -- Daily Paths, Life Paths and Dominant Projects -- Connections Between Practices -- Bundles and Complexes -- Collaboration and Competition -- Selection and Integration -- Coordinating Daily Life -- Circuits of Reproduction -- Monitoring Practices-as-Performances -- Monitoring Practices-as-Entities -- Cross-Referencing Practices-as-Performances -- Cross-Referencing Practices-as-Entities -- Aggregation -- Elements of Coordination -- Intersecting Circuits -- Representing the Dynamics of Social Practice -- Representing Elements and Practices -- Characterizing Circulation -- Competition, Transformation and Convergence -- Reproducing Elements, Practices and Relations between Them -- Time and Practice -- Space and Practice -- Dominant Projects and Power -- Promoting Transitions in Practice -- Climate Change and Behaviour Change -- Basis of Action -- Processes of Change -- Positioning Policy -- Transferable Lessons -- Practice Theory and Climate Change Policy -- Configuring Elements of Practice -- Configuring Relations between Practices -- Configuring Careers: Carriers and Practices -- Configuring Connections -- Practice Oriented Policy Making. (shrink)

Due to constraints on institutional capacity and financial resources, the road to universal health coverage (UHC) involves difficult policy choices. To assist with these choices, scholars and policy makers have done extensive work on criteria to assess the substantive fairness of health financing policies: their impact on the distribution of rights, duties, benefits and burdens on the path towards UHC. However, less attention has been paid to the procedural fairness of health financing decisions. The Accountability (...) for Reasonableness Framework (A4R), which is widely applied to assess procedural fairness, has primarily been used in priority-setting for purchasing decisions, with revenue mobilization and pooling receiving limited attention. Furthermore, the sufficiency of the A4R framework’s four criteria (publicity, relevance, revisions and appeals, and enforcement) has been questioned. Moreover, research in political theory and public administration (including deliberative democracy), public finance, environmental management, psychology, and health financing has examined the key features of procedural fairness, but these insights have not been synthesized into a comprehensive set of criteria for fair decision-making processes in health financing. A systematic study of how these criteria have been applied in decision-making situations related to health financing and in other areas is also lacking. This paper addresses these gaps through a scoping review. It argues that the literature across many disciplines can be synthesized into 10 core criteria with common philosophical foundations. These go beyond A4R and encompass equality, impartiality, consistency over time, reason-giving, transparency, accuracy of information, participation, inclusiveness, revisability and enforcement. These criteria can be used to evaluate and guide decision-making processes for financing UHC across different country income levels and health financing arrangements. The review also presents examples of how these criteria have been applied to decisions in health financing and other sectors. (shrink)

Critics of international trade agreements often cast them as threats to human health, and they can point to some sobering warnings from world history. Infectious diseases have swept across political boundaries, carried by traders, colonists, and other agents of globalization. Transnational epidemics have laid economies low, undermining political stability. The spread of viruses and bacteria to peoples previously unexposed and therefore lacking immunity has decimated populations and changed the political course of continents. Trade, exploration, and warfare have repeatedly produced (...) encounters between peoples at different levels of agricultural and technological development. Often, the results have been devastating for the disadvantaged group — economic marginalization, loss of sovereignty and culture, and collapse of public health. Yet the rise of civilization — plant and animal domestication, division of labor, technology, and resulting prosperity — was powered in large part by movement of products and knowledge along routes of trade and migration. (shrink)

Critics of international trade agreements often cast them as threats to human health, and they can point to some sobering warnings from world history. Infectious diseases have swept across political boundaries, carried by traders, colonists, and other agents of globalization. Transnational epidemics have laid economies low, undermining political stability. The spread of viruses and bacteria to peoples previously unexposed and therefore lacking immunity has decimated populations and changed the political course of continents. Trade, exploration, and warfare have repeatedly produced (...) encounters between peoples at different levels of agricultural and technological development. Often, the results have been devastating for the disadvantaged group — economic marginalization, loss of sovereignty and culture, and collapse of public health. Yet the rise of civilization — plant and animal domestication, division of labor, technology, and resulting prosperity — was powered in large part by movement of products and knowledge along routes of trade and migration. (shrink)

Earp et al. provide a robust justification for the decriminalization of drugs based on the systemic racism that fuels the “war on drugs” and the ongoing harms of drug policies to individuals...

In ‘Ethics of sharing medical knowledge with the community: is the physician responsible for medical outreach during a pandemic?’ Strous and Karni note that the revised physician’s pledge in the World Medical Association Declaration of Geneva obligates individual physicians to share medical knowledge, which they interpret to mean a requirement to share knowledge publicly and through outreach. In the context of the COVID-19 pandemic, Strous and Karni defend a form of medical paternalism insofar as the individual physician must reach out (...) to communities who may not want, or know to seek out, medical advice, for reasons of public health and health equity. Strous and Karni offer a novel defence of why physicians ought to intervene even in insular communities, and they offer suggestions for how this could be done in culturally sensitive ways. Yet their view rests on an unfounded interpretation of the Geneva Declaration language. More problematically, their paper confuses shared and collective responsibility, misattributing the scope of individual physician obligations in potentially harmful ways. In response, this reply delineates between shared and collective responsibility, and suggests that to defend the obligation of medical outreach Strous and Karni propose, it is better conceptualised as a collective responsibility of the medical profession, rather than a shared responsibility of individual physicians. This interpretation rejects paternalism on the part of individual providers in favour of a more sensitive and collaborative practice of knowledge sharing between physicians and communities, and in the service of collective responsibility. (shrink)

In this commentary, I consider how Giulia Cavaliere’s arguments about the limited reach of the current justifications offered for full ectogenesis in the bioethical literature apply in the context of partial ectogenesis. I suggest that considering the extent to which partial ectogenesis is freedom or equality promoting is more urgent because of the more realistic prospect of artificial womb technology being utilised to facilitate partial gestation extra uterum as opposed to facilitating complete gestation from conception to term. I highlight concerns (...) about potentially harmful social narratives surrounding pregnancy and about the current legal framework surrounding gestation limiting access to technology in the advent of partial ectogenesis. I do not advocate that these concerns mean that we ought not develop artificial wombs, but like Cavaliere I suggest that we must be mindful of these concerns, and I posit that legal reform must accompany technological developments. Ectogenesis as a political perspective, through which we consider the value in social reproduction and the experiences of pregnant people, is useful to prevent political capture of this technology for regressive policies. Using this perspective to examine the law is also a useful tool to expose just how restrictive the law is in relation to gestation and female reproductive health. (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)

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)

The Patient Protection and Affordable Care Act represents the most significant reform of the United States health care system in decades. ACA also substantially amplifies the federal role in health care regulation. Among other provisions, ACA expands government health care programs, imposes detailed federal standards for commercial health insurance policies, creates national requirements on employers and individuals, and enlists state administrative capacity to implement various federal reforms. In response, a persistent voice in the protracted, contentious debate (...) surrounding ACA was, and continues to be, resistance from states. The rhetoric of federalism — states’ rights, reserved powers, state sovereignty, limited government, and local diversity — resonates deeply even around provisions of ACA that do not specifically implicate state interests. For example, the loudest and most persistent state objections target the new mandate that individuals maintain health insurance, a requirement imposed by ACA and enforced through federal tax penalties. (shrink)

The Patient Protection and Affordable Care Act represents the most significant reform of the United States health care system in decades. ACA also substantially amplifies the federal role in health care regulation. Among other provisions, ACA expands government health care programs, imposes detailed federal standards for commercial health insurance policies, creates national requirements on employers and individuals, and enlists state administrative capacity to implement various federal reforms. In response, a persistent voice in the protracted, contentious debate (...) surrounding ACA was, and continues to be, resistance from states. The rhetoric of federalism — states’ rights, reserved powers, state sovereignty, limited government, and local diversity — resonates deeply even around provisions of ACA that do not specifically implicate state interests. For example, the loudest and most persistent state objections target the new mandate that individuals maintain health insurance, a requirement imposed by ACA and enforced through federal tax penalties. (shrink)

How does so much gender inequality endure in an era when many laws and policies endorse principles of gender equality? This essay examines this dilemma by considering Susan Moller Okin's criticism of “false gender neutrality,” research on implicit bias, and the shifting relation of gender bias to American law. I argue that these are crucial elements of the modern cycle of gender inequality, enabling it to operate through a perverse “invisible-hand” mechanism. This framework helps convey how underlying gender bias influences (...) individual behaviors that generate, legitimate, and mask broad patterns of inequality. Contemporary legal conflicts reflect many of these dynamics, which appear in controversies over gender-based violence, gender discrimination in pay and promotion, and women's reproductive health care benefits. This analysis advances our understanding of how the contemporary cycle of gender inequality operates, the complex links between individual behavior and structural bias, and the difficulty of pursuing gender justice through prevailing frameworks of law and liberalism. It also underscores the continued importance of feminists' collective work to address “invisible” as well as visible biases. (shrink)

This interdisciplinary course, which included students from medicine, public health, law, and public policy, explored the concept of “prevention” and the role of law and public policy preventing disease and injury and improving population health. In addition to interdisciplinary course content, students worked in interdisciplinary teams on public health law and policy projects at community organizations and agencies.

This book explores the tradition of the 'science of man' in French medicine of the era 1750-1850, focusing on controversies about the nature of the 'physical-moral' relation and their effects on the role of medicine in French society. Its chief purpose is to recover the history of a holistic tradition in French medicine that has been neglected because it lay outside the mainstream themes of modern medicine, which include experimental, reductionist, and localistic conceptions of health and disease. Professor (...) Williams also challenges existing historiography, which argues that the 'anthropological' approach to medicine was a short-term by-product of the leftist politics of the French Revolution. This work argues instead that the medical science of man long outlived the Revolution, that it spanned traditional ideological divisions, and that it reflected the shared aim of French physicians, whatever their politics, to claim broad cultural authority in French society. (shrink)

The ethnic or “racial” classification of Maori and non-Maori is a pivotal feature of New Zealand’s health system and affects government policy and professional practice within the context of Treaty of Waitangi “partnership” politics. Although intended to empower Maori, ethnic categorization can have unintended and negative consequences by ignoring the causality of material forces in social phenomena. The authors begin by showing how the use of ethnic categories in health policy is justified by the Treaty of (...) Waitangi partnership policies. This provides the context for the argument made in the manuscript that an understanding of the social experience of ethnicity within the complex interaction of sociocultural factors such as socioeconomic location and lifestyle is more useful than using the political construct of ethnic categories in explaining the persistence of low health status for a section of the Maori population. (shrink)

High quality monitoring of mental health and well-being over an extended period is essential to understand how communities respond to the COVID-19 pandemic and how to best tailor interventions. Multiple community threats may also have cumulative impact on mental health, so examination across several contexts is important. The objective of this study is to report on changes in mental health and well-being in response to the Australian bushfires and COVID-19 pandemic. This study utilized an Experience-Sampling-Method, using the (...) smartphone-based mood monitoring application, MoodPrism. Participants were prompted once a day to complete a brief survey inquiring about symptoms of depression and anxiety, and several well-being indices, including arousal, emotional valence, self-esteem, motivation, social connectedness, meaning and purpose, and control. Participants were N = 755 Australians who downloaded and used MoodPrism, between 2018 and 2020. Results showed that anxiety symptoms significantly increased during the COVID-19 pandemic, but not during the bushfires. This may be explained by concurrent feelings of social connectedness maintained during the bushfires but not during the pandemic. In contrast, depressive symptoms increased significantly during the bushfires, which maintained during the pandemic. Most indices of well-being decreased significantly during the bushfires, and further again during the pandemic. Study findings highlight the unique responses to the bushfire and COVID-19 crises, revealing specific areas of resilience and vulnerability. Such information can help inform the development of public health interventions or individual clinical treatment, to improve treatment approaches and preparedness for potential future community disasters. (shrink)

© Mind Association 2017By any credible theory of justice, the creation and perpetuation of the ghetto—racially segregated metropolitan areas of concentrated disadvantage to which many poor blacks are consigned—is profoundly unjust. In Dark Ghettos, Tommie Shelby develops a nonideal moral perspective centred on the injustices of the ghetto, through which he critically examines state policies directed towards ameliorating these disadvantages. He also proposes an interpretation of the conduct of some of the more alienated ghetto residents as justified resistance rather than (...) moral vice. A powerful and distinctive feature of Dark Ghettos is its focus on ghetto residents as moral agents with ethical duties of justice as well as rights that need to be respected.Dark Ghettos advances a radical critique of current policies on the basis of surprisingly conventional conceptions of ideal theory and its relation to nonideal theory. Shelby accepts a Rawlsian theory of justice, focused on... (shrink)

BackgroundUse of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform (...) an ethical policy.MethodsEighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns.ResultsJurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing.ConclusionsInformed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data. (shrink)

This article describes overlapping links among incarceration, poor health, race, and stigma, and stigma's impact on the health of former prisoners and their families and communities. The authors include policy recommendations to reduce the impact of incarceration and stigma.

One might say that Clare is almost by virtue of that label alone a political poet. “Peasant poet” is a contradiction in terms from the perspective of English literary history, or of the longer history of the literary pastoral. The phrase must refer to two different social locations, and as such makes social place an explicit, problematic concern for the middle-class readers of that poet’s work. To Clare’s publisher and patrons in the 1820s, as to his editors in the 1980s, (...) the language, the forms, the sentiments, and even the punctuation of his poetry are further markers of class difference for an audience invited to read him as a peasant poet. In recent collections concerned to recover the politics of English poetry these signs of difference are highly valued.2 They seem to mark Clare’s work as what Fredric Jameson terms “strong” political art, that is, “authentic cultural creation … dependent for its existence on authentic collective life, on the vitality of the ‘organic’ social group.”3At the time his poems were published class difference in English rural life was a political issue sufficiently charged to make publisher and patrons wish to minimize its marks in Clare’s poetry. On the one hand, a clearly understood hierarchy was the form of social stability that rural scenes staged for their urban middle-class audiences. Evidence of class difference confirmed the survival of this hierarchy and the reader’s position in it. Clare’s poetry of place affirmed a system of social as well as geographical differences felt as a traditional—and essential—aspect of English national identity. On the other hand, however, the countryside was precisely where the erosion of the hierarchical relations of deference and responsibility was particularly noticeable, and disturbing, in the years after 1815. Sporadic outbreaks of protest against low wages and unemployment in 1816, 1822, and 1830 realized dramatically for the middle and upper classes what one might call a rural version of the process Marx was later to term alienation: the known and familiar inhabitants of the rural scene—laborers, village artisans—were suddenly made strange to their middle- and upper-class neighbors, so much so that many observers were convinced that they must be strangers, intruders from another pace .4 The elements of difference, or strangeness, in Clare’s poetry—the marks of his identity as rural laborer—thus also risked awaking specific anxieties among his early readers. Clare’s editor and publisher, John Taylor, punctuated, regularized meter, and replaced some of Clare’s unfamiliar local vocabulary. Nonetheless, his two most important early patrons, the evangelical aristocrat Lord Radstock and the middle-class Mrs. Emmerson, objected to some lines as “radical slang” and others as “vulgar.” The language of class risked rejection as politically subversive. Especially in an already politicized rural scene, the peasant poet could not be a neutral figure. 2. Both A Book of English Pastoral Verse, ed. John Barrell and John Bull and The Faber Book of Political Verse, ed. Tom Paulin restore Clare’s original orthography and lack of punctuation to support the label “peasant poet.”3. Fredric Jameson, “Reification and Utopia in Mass Culture,” Social Text 1 : 140. Elizabeth Helsinger is associate professor of English and general studies at the University of Chicago and a coeditor of Critical Inquiry. Her Ruskin and the Art of the Beholder was published in 1982. The present essay is part of a book in progress on representations of the rural scene in Victorian England. (shrink)

The healthcare system—the assemblage of hospitals, insurers, professional associations, policymakers, patients, caregivers, and other entities oriented toward health in the United States—does more than cure illness. It is, and in some cases ought to be but falls short, attentive to endpoints other than cure, such as comfort, participation in desired activities, and the creation of families—things that may broadly be understood as promoting well-being. In the United States, health care utilization is prohibitively expensive. As a result, most people (...) can only access care through insurance. While the care available within the broad U.S. healthcare system may be oriented toward a wide variety of endpoints, insurance... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Editors' Introduction to the Special Issue on the Translational Work of BioethicsElizabeth Lanphier and Larry R. ChurchillRecent essays in Perspectives and Biology and Medicine, including "Can Clinical Ethics Survive Climate Change" by Andrew Jameton and Jessica Pierce and "Ethical Maxims for a Marginally Inhabitable Planet" by David Schenck and Larry R. Churchill, both appearing in the Autumn 2021 issue, inspired conversations between us, among our colleagues, and with various (...) contributors to this symposium. We asked of ourselves and each other: where can, should, or must bioethics as a field go to make what bioethicists know and publish about in the academic literature relevant to public policy decisions, health and technological innovation, and a general public? In other words, where do we, practically speaking, go with our bioethical insights and discoveries to make a tangible impact on issues like climate change—though that is only one of the various topics that the authors in this symposium tackle.This translational work of connecting scholarly innovation back to overt practical innovation is often peripheral to academic bioethics. It is not the work the academy typically recognizes in its credit system. Yet this translational work is becoming a critical, central duty of bioethics for the 21st century, while the kinds of work the academy most valorizes may be the least important at this time. In particular, the need for translational initiatives is increasingly evident as pandemics linger into a new normal, the long history and ongoing impacts of racism become even more evident at institutional levels, and the devastating health implications of global warming emerge. [End Page 515]Bioethicists function in privileged proximity to the deleterious effects of failed health and social policy, as well the interplay between seemingly personal health choices, such as those related to diet or lifestyle, and inequitable conditions that impact the options available to individuals and groups. We are increasingly distressed by what we see from this privileged window into health. The COVID-19 pandemic has made preexisting social and policy inequities impacting health impossible to ignore. At the same time, the patterns of carbon pollution portend health crises of unprecedent severity and magnitude in the near future—and will likely deepen inequities and disparities already occurring between those most contributing to, and those most harmed by, climate change.As a field, bioethics has, since its start, been at the intersection of theory and practice. But it is not sufficient for the field to reside passively at this crossroads. The field must be constantly innovating new byways and highways, new offshoots from existing pathways and connector roads between them, that build out both the theory and practice of bioethics in a mutually innovative relationship to each other. Bioethics does not make sense without attention to the real-world practices and the lived realities of health and care. The practical engagement is what deepens and enriches theory, in ways that are more responsive to the real world in which bioethicists toil. But it also is not enough to merely contribute to the body of bioethics scholarship. The translational bioethics we envision is also about using novel theories and concepts to actively shape practices and realities; it is a bioethics in which theory and practices mutually influence each other, each reaching out to generate and change the other.This collection of essays, drawn from a diverse number of scholars, offers several promising paths forward. The essays were written in the spring of 2022, two years into the COVID-19 pandemic, two years after the murder of George Floyd and international attention to the movement for Black lives, and for the most part in the weeks just prior to a set of US Supreme Court decisions with enormous impacts on health, including the June 24 Dobbs v. Jackson Women's Health Organization and the June 30 West Virginia v. EPA decisions.The authors are diverse in age, spheres of work, discipline, sex, race, and ethnicity. They expand our vision for what bioethics can and should be. While we have grouped the essays by subject matter, most of the pieces speak to the field as a whole and invite cross-fertilization. We hope readers will find new ideas, old ideas... (shrink)

Background Although the importance of clinical ethics in contemporary clinical environments is established, development of formal clinical ethics services in the Australia health system has, to date, been ad hoc. This study was designed to systematically follow and reflect upon the first 18 months of activity by a newly established service, to examine key barriers and facilitators to establishing a new service in an Australian hospital setting. Methods: how the study was performed and statistical tests used A qualitative case (...) study approach was utilised. The study gathered and analysed data using observations of service committee meetings, document analysis of agendas and minutes, and semi-structured interviews with committee members to generate semantic themes. By interpreting the thematic findings in reference to national capacity building resources, this study also aimed to provide practice-based reflections for other health agencies. Results: the main findings An overarching theme identified in the data was a strong commitment to supporting clinicians facing difficult patient care decisions and navigating difficult discussions with patients and families. Another key theme was the role of the new clinical ethics support service in providing clinicians with a pathway to raise system-wide issues with the organisation Executive. While there was strong clinical engagement, consumer and community participation remained a challenge, as did unresolved governance issues and a need for clearer policy relationship between the service and the organisation. Conclusions: brief summary and potential implications Considering these themes in relation to the national capacity building resources, the study identifies three areas likely to require ongoing development and negotiation. These are: the role of the clinical ethics support service as a link between the workforce and the Executive; the incorporation of consumers and patients; and ethical reasoning. To improve the effectiveness of the service, it is necessary to increase clarity on the service’s role at the governance and policy level, as well as develop strategies for engaging consumers, patients and families. Finally, the capacity of the service to reflect on complex cases may be enhanced through explicit discussions of various different ethical frameworks and ways of deliberating. (shrink)

During the past two decades, several reports have documented substantial support from clinicians, policy-makers, and the general public for the use of advance directives, yet studies continue to find that only a minority of individuals have completed these legal documents. Advance directives are written instructions, such as living wills or durable powers of attorney for health care, which describe an individual's medical treatment wishes in the event that individual becomes incapacitated in the future. The completion and use of (...) advance directives is one of several components of the broader activity of advance care planning, that is, the overall planning and communication of personal wishes concerning future medical care.In December 1991, the federal Patient Self-Determination Act became effective. Promoted as a federal initiative to enhance an individual's control over medical treatment decision making and, therefore, patient autonomy and self-determination, PSDA placed several new requirements on health care organizations receiving Medicare or Medicaid payments. (shrink)

During the past two decades, several reports have documented substantial support from clinicians, policy-makers, and the general public for the use of advance directives, yet studies continue to find that only a minority of individuals have completed these legal documents. Advance directives are written instructions, such as living wills or durable powers of attorney for health care, which describe an individual's medical treatment wishes in the event that individual becomes incapacitated in the future. The completion and use of (...) advance directives is one of several components of the broader activity of advance care planning, that is, the overall planning and communication of personal wishes concerning future medical care.In December 1991, the federal Patient Self-Determination Act became effective. Promoted as a federal initiative to enhance an individual's control over medical treatment decision making and, therefore, patient autonomy and self-determination, PSDA placed several new requirements on health care organizations receiving Medicare or Medicaid payments. (shrink)

Religious leaders face numerous mental health challenges, and prior research suggests that some experience symptoms of post-traumatic stress disorder due to work-related experiences. This study employed a diverse sample of 274 religious leaders to qualitatively describe the types of work-related experiences they identify as particularly stressful or overwhelming, assess the prevalence of PTSD symptoms associated with these experiences, and test hypothesized associations between PTSD symptoms and narcissism. The study found that the stressful experiences reported typically involved relational conflict, having (...) limited resources, or caring for people suffering. Over half of the sample endorsed symptoms that were above the cutoff for a clinical concern for PTSD, and PTSD symptoms were significantly associated with symptoms of both vulnerable narcissism and grandiose narcissism. Practical implications for the ongoing formation and support of religious leaders are discussed. (shrink)

“The NHS may not, on a tight definition, be a business, but it has an obligation to its financial stakeholders , and this implies an ethical obligation to be business‐like. This means it must be as well‐managed as it is well‐meaning.” The author is Chairman of St George's Healthcare NHS Trust. Until 1988 she was Head of the Department of Politics at Queen Mary and Westfield College, University of London, where she is now Visiting Professor. She is a non‐executive (...) director of Norwich Union and of the HMV Group and her most recent book is Business Ethics at Work, Cambridge University Press, 1995. (shrink)

“The NHS may not, on a tight definition, be a business, but it has an obligation to its financial stakeholders, and this implies an ethical obligation to be business‐like. This means it must be as well‐managed as it is well‐meaning.” The author is Chairman of St George's Healthcare NHS Trust. Until 1988 she was Head of the Department of Politics at Queen Mary and Westfield College, University of London, where she is now Visiting Professor. She is a non‐executive director (...) of Norwich Union and of the HMV Group and her most recent book is Business Ethics at Work, Cambridge University Press, 1995. (shrink)

The National Institutes of Health (NIH) invests over $37 billion per year in support of research to improve human health. All research funded by NIH that involves human subjects is subject to regulatory oversight, requiring institutions to staff and manage Institutional Review Boards (IRBs). IRB members, chairs, and the many associated human subjects protections oversight professionals who support the work of the IRB must navigate complex federal regulations issued by multiple agencies. This book is the industry standard reference (...) work for the research oversight community, providing comprehensive, understandable interpretations of the regulations, clear descriptions of the ethical principles on which the regulations are based, and practical best-practices guidelines for effectively implementing regulatory oversight. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Patient Self-Determination ActElizabeth Leibold McCloskey (bio)What are the ethics of extending the length of life? We know that we cannot artificially end life (Thou Shalt not Kill), but how about artificially extending life? Is that always good, sometimes good?... In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?... What does basic religious ethics say about this?(John C. Danforth, letter to (...) the author, 19 August 1989)The Patient Self-Determination Act, signed into law as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90) last November, marks the first time that Congress has passed legislation concerning the ethics of life-sustaining medical treatment. The bill was spearheaded by Senator John C. Danforth (RMO), who has a special interest in this area. An Episcopal priest, Danforth was formerly an assistant chaplain at New York's Memorial Sloan-Kettering Cancer Center and now sits as a senior member of the Senate Finance Committee, which oversees Medicare and Medicaid. Although Senator Danforth's legislative initiative was not a result of the Cruzan case, it was in his state of Missouri that the U.S. Supreme Court case involving removal of Nancy Cruzan's feeding tube arose (Cruzan v. Director of Missouri Department of Health, U.S. Supreme Court, 58 LW 4916, 26 June 1990). From his unique vantage point, he felt it was time to craft a legislative response to some of the difficult issues surrounding prolongation of life.The short answer to Senator Danforth's questions about when to artificially extend life is simple enough: people must be free to determine that for themselves. Common law and common sense dictate such a conclusion; living will and health care proxy statutes, enacted in almost every state, codify that right. The Catholic moral tradition teaches that one is not morally obligated to use extraordinary means to prolong life, a tradition shared both by the mainline Protestant and the reform and conservative Jewish community. Yet most people are unaware of their fundamental legal right to make such decisions, and as court cases from Quinlan (In re Quinlin, 137 N.J. Super. 227, 1975) to Cruzan demonstrate, few know [End Page 163] how to make arrangements for this right to be exercised if they become incapacitated.Meanwhile, health care practices are often driven by a denial of death. When Senator Danforth and Senator Daniel Patrick Moynihan (D-NY) introduced the bill on October 17, 1989, Senator Danforth said:More and more it is arguable that we play God by subjecting people to unwanted and sometimes unnecessary treatment, treatment that unnaturally prolongs the dying process. Our health care system has become obsessed with extending life, at times neglecting the caring component of medicine and trampling on the rights of patients.(Congressional Record 1989, 135:5.13566)The American Hospital Association estimates that 70 percent of deaths now occur after a determination to withhold or withdraw medical treatment. Many of those decisions are made without the benefit of an incapacitated patient's views, yet a Harvard study revealed that 95 percent of the population would like to prepare in advance for such decisions. Only 4 percent of hospitals have a systematic method of asking patients if they have an advance directive. Family members confront painful choices in the face of uncertainty about their loved one's wishes and it can be even more painful when a family knows the patient's desires but providers and the courts act otherwise because clear evidence is lacking.The Patient Self-Determination Act is rooted in the belief that people should be given information that enables them to specify the extent of medical treatment they wish to receive should they become incapacitated. The public should be educated about applicable state laws that protect the individual's right to make such choices through the use of an advance directive.The Act moves toward that goal by promoting knowledge of state laws. It requires every hospital, nursing home, home health agency, hospice, and health maintenance organization that participates in Medicaid or Medicare to routinely give all adult patients information about advance directives. Patients will also be given information on the... (shrink)

I Several years ago, when the Carter administration announced that it would support congressional action to end the public fund ing of abortions, the President was asked at a press conference whether he thought that such a policy was unfair; he responded, "Life is unfair." His remarks provoked a storm of controversy. For other than those who, for principled reasons, opposed abor tion on any grounds, it seemed that the President's comments were cruel, violating what was thought to be (...) an American com mitment to providing equal access to health services to all citi zens, regardless of their capacity to pay. Those sentiments had, in fact, been reflected in public opinion polls that had, for at least three decades, indicated that Americans supported the propo sition that the government should guarantee health care to all. Ultimately, those beliefs had been translated into the oft-ex 1 pressed political demand for a one-class system of health care. This commitment to equality is rather remarkable. American society evidences a striking willingness to tolerate vast inequal ities with regard to income and wealth. While it guarantees ed ucation to all children, there is not even a pretense that the children of the wealthy and the children of the poor ought to get precisely the same kind of schooling. While some commitment 'Hazel Erskine. "The Polls: Health Insurance," Public Opinion Quarterly, XXXIX (Spring, 1975), 128-143. (shrink)

ABSTRACT:This essay explores how bioethics as a field, rather than as a collection of individual efforts by bioethicists working within it, can inform deliberation on matters of bioethical import that, for better or worse, are in the hands of civic processes. It is motivated by the repeal of a constitutional protection of abortion access in the Supreme Court Dobbs v. Jackson Women's Health Organization decision, which effectively returned abortion regulations to states rather than setting a baseline federal protection of (...) abortion access up to fetal viability. Given the outsized role of local legislators in shaping health-care policy through legislation, about abortion as well as other health topics, the author proposes foundational bioethical education for legislators and considers two potential models for such education: one that operates on a clinical ethics consultation model, and one that mirrors bioethical coursework taught in traditional academic settings but modified for a legislator audience. Although both models present notable challenges requiring further conceptualization and problem-solving, overcoming these hurdles would enable bioethics to provide a service to civic learning and placemaking that would complement advocacy or lobbying efforts by individual bioethicists. (shrink)

Shifts in funding and a worldwide trend towards marketising higher education have led to a new emphasis on the quality of the student experience. In the UK this trend finds its strongest expression in recent policy proposals to simultaneously increase student fees and student choice so that students themselves become the drivers of higher education. We trace the policy developments of this shift over recent years and rehearse some of the criticisms against it. Accepting that there is good (...) reason to support improving the student experience, we then consider ways in which this might be achieved that foreground the relation of university teachers with their subject matter and students’ engagement in this. A higher education, we argue, should expose its students to disciplines whose standards are rightly contested and to a form of learning that intensifies or unsettles desires rather than simply aspiring to satisfy them. (shrink)

Health worker shortages in many countries are reaching crisis levels, exacerbated by factors associated with the COVID-19 pandemic. In New Zealand, the medical specialists union has called for a health workforce emergency to be declared, yet at the same time, many foreign-trained healthcare workers are unable to stay in the country or unable to work. While their health systems differ, countries such as New Zealand, the USA and the UK at least partially rely on international medical graduates (...) (IMGs) to ensure access to health services, particularly in underserved communities. This paper focuses on the challenges faced by many IMGs, particularly those that constrain their capacity to live and work in the countries that rely on their skills. These challenges give rise to two ethical problems. First, they represent a failure of reciprocity towards IMGs; second, they represent a source of harm, both to IMGs themselves and to communities whose healthcare service depends on contributions made by IMGs. We argue that brain waste and disvaluing the contributions of IMGs and other foreign-trained health professionals have significant costs for maintaining a functional healthcare system, costs which must be adequately recognised and counted. (shrink)