In lieu of an abstract, here is a brief excerpt of the content:A Medical MishapAngela MooreIn western society we live in an environment where image is valued and sought after. Acquiring Spastic Cerebral Palsy through no fault of one’s own directly challenges and contradicts this. We tend to base our judgments of other people on the way they “look” before we even speak to them or get to know them. For many centuries western society has valued and aspired to having (...) the “perfect” image and body shape. The children’s nursery rhyme “Humpty Dumpty” illustrates that as far back as the 1600’s when something was broken people felt there was a “need” to correct the damage and fix the problem. Maybe “Humpty Dumpty” was an obese person who fell off the wall, maybe he was an intoxicated soldier, maybe it was a name of a large cannon that was sitting on the wall of Colchester (Wright, 2008) which was set up to protect the city. No matter what the situation, the reader is left with a feeling that whenever there was something wrong with Humpty Dumpty, there was a need to correct the error and fix what was broken. Because he was “different” or “not normal” in one way or another he was not valued for his role by members of his local community. The reader is left to form his or her own opinion. Society continues to hold those views to this very day.I am a secondary emergency teacher, have completed a Masters in Special Needs along with having a permanent acquired physical disability, Spastic Cerebral Palsy, affecting my four limbs. This was caused after an initial medical examination was “botched” by an unsupervised intern—the specialist left the theatre during the procedure when I was 14 weeks of age, over forty years ago. Further medical testing was arranged because there was a belief that I may have had hydrocephalus—swelling and excess fluid buildup around my brain causing it to be unnecessarily enlarge for my age. In my family’s case this seems to be an hereditary trait that has passed from my father who has a large head. It’s interesting to note that an obstetrician made a comment to my sister on the size of her toddler’s head. [End Page 213]Since 1970 I have had a range of both positive and negative medical experiences. As a child who wasn’t able to comprehend what and why things were happening I was very frightened and often very upset. As an adult I am able to understand what and why something is going on and I ask questions when needed.“Normal” has always been completing the same things but in a different way to other people while intending to reach the same outcome of “success.” There are many ways to skin a cat and “normal” is a term that has a very broad definition which is dependent upon the individual and the situation at hand. What is “normal” for me will be “different” for someone else. What is “normal” for another person will be “different” for me. It’s the differences between individuals that we come to value later on in life. That I cope in a different manner from others has clearly been aided by being able to make use of information technology—laptop, mobile phones, printers, etc.—along with a feeling that the acquired physical disability that I have is a small part of the overall person that I am. Before I became a person with an acquired disability I was a normal, happy, healthy baby and even now although I will always have a disability I have excellent health and choose not to be defined by having acquired a disability. Unlike some other people I consider myself to be a person who “acquired” a disability instead of being a “disabled” person. Having an acquired physical disability is a small part of the person I am. The manner in which I acquired a severe physical disability is what I have come to value along with the fact that I have done well in many areas of life while having such a severe condition.Unlike people who had disabilities in the 19... (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)

Science is the study of our world, as it is in its messy reality. Nonetheless, science requires idealization to function—if we are to attempt to understand the world, we have to find ways to reduce its complexity. Idealization and the Aims of Science shows just how crucial idealization is to science and why it matters. Beginning with the acknowledgment of our status as limited human agents trying to make sense of an exceedingly complex world, Angela Potochnik moves on to (...) explain how science aims to depict and make use of causal patterns—a project that makes essential use of idealization. She offers case studies from a number of branches of science to demonstrate the ubiquity of idealization, shows how causal patterns are used to develop scientific explanations, and describes how the necessarily imperfect connection between science and truth leads to researchers’ values influencing their findings. The resulting book is a tour de force, a synthesis of the study of idealization that also offers countless new insights and avenues for future exploration. (shrink)

When Ron Giere introduced perspectivism into philosophy of science, he provided a perspectivist analysis of both scientific instruments and scientific theorizing. Today, there is a burgeoning literature that extends Giere’s analysis of theorizing, with many philosophers examining the perspectivist approach to aspects of theorizing such as models, laws, explanations, and so on. However, relatively little attention has been paid to Giere’s analysis of instruments. In this article, I hope to fill this gap. I argue that the perspectivist analysis of instruments (...) should be rejected. First, I give a general account of the kind of instrumentation relevant to instrumental perspectivism, drawing on Cartwright’s notion of nomological machines, which forms the basis of my criticism of Giere’s argument for instrumental perspectivism. Next, I present the case against instrumental perspectivism. I argue that instrumental perspectivism is dependent on theoretical perspectivism in a way that robs it of philosophical significance, and that it introduces new puzzles while adding little to our understanding of instruments. (shrink)

How can we register the participation of a range of elements, extending beyond the human subject, in the production of HIV events? In the context of proposals around biomedical prevention, there is a growing awareness of the need to find ways of responding to complexity, as everywhere new combinations of treatment, behavior, drugs, norms, meanings and devices are coming into encounter with one another, or are set to come into encounter with one another, with a range of unpredictable effects. In (...) this paper I consider the operation of various framing devices that attribute responsibility and causation with regard to HIV events. I propose that we need to sharpen our analytic focus on what these devices do, their performativity—that is, their full range of worldly implications and effects. My primary examples are the criminal law and the randomized control trial. I argue that these institutions operate as framing devices: They attribute responsibility for HIV events and externalize other elements and effects in the process. Drawing on recent work in science and technology studies as well as queer theory, I set out an analytic frame that marks out a new role for HIV social research. Attentiveness to the performative effects of these devices is crucial, I suggest, if we want better to address the global HIV epidemic. (shrink)

According to constructive empiricists, accepting a scientific theory involves belief only that it is true of the observable world, where observability is defined in terms of what is detectable by the unaided senses. On this view, scientific instruments are machines that generate new observable data, but this data need not be interpreted as providing access to a realm of phenomena beyond what is revealed by the senses. A recent challenge to the constructive empiricist account of instruments appeals to the extended (...) mind thesis, according to which cognitive processes are sometimes constituted not just by brain activity, but can extend into the rest of the body and the surrounding environment. If this is right, scientific instruments may, in the right circumstances, literally become part of our perceptual processes. In this article, I examine this extended perception argument, and I find that it fails for the vast majority of scientific instruments. Even if the extended mind thesis is accepted, the constructive empiricist can draw a line between observables and unobservables that makes very few concessions to the realist. (shrink)

This book critically reviews all principal contributions to the American animal rights debate by activists, campaigners, academics, and lawyers, while placing animal rights in context with other related and competing movements.

A number of philosophers have recently argued that we should interpret the debate over moral responsibility as a debate over the conditions under which it would be “fair” to blame a person for her attitudes or conduct. What is distinctive about these accounts is that they begin with the stance of the moral judge, rather than that of the agent who is judged, and make attributions of responsibility dependent upon whether it would be fair or appropriate for a moral judge (...) to react to the agent in various (negative) ways. This is problematic, I argue, because our intuitions about whether and when it would be fair to react negatively to another are sensitive to a host of considerations that appear to have little or nothing to do with an agent’s responsibility or culpability for her attitudes or behavior. If this is correct, then theories which make attributions of responsibility dependent upon the appropriateness of our reactions as moral judges will turn out to be fundamentally misguided. (shrink)

Using data collected at two phases, this study examines why and how ethical leadership behavior influences employees’ evaluations of organization-focused justice, i.e., procedural justice and distributive justice. By proposing ethical leaders as moral agents of the organization, we build up the linkage between ethical leadership behavior and the above two types of organization-focused justice. We further suggest trust in organization as a key mediating mechanism in the linkage. Our findings indicate that ethical leadership behavior engenders employees’ trust in their employing (...) organization, which in turn promotes their justice perceptions toward the organization. The theoretical and practical implications of these findings are discussed, and some directions for future research are suggested. (shrink)

ABSTRACTIt has recently become fashionable among those who write on questions of moral responsibility to distinguish two different concepts, or senses, of moral responsibility via the labels ‘responsibility as attributability’ and ‘responsibility as accountability’. Gary Watson was perhaps the first to introduce this distinction in his influential 1996 article ‘Two Faces of Responsibility’ , but it has since been taken up by many other philosophers. My aim in this study is to raise some questions and doubts about this distinction and (...) to argue that it has led to confusion rather than clarification in debates over moral responsibility. In place of the attributability/accountability distinction, I propose that there is a single concept of moral responsibility underlying our actual moral practices. This core notion of moral responsibility, which I call ‘responsibility as answerability’, is well positioned to explain thos.. (shrink)

The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional (...) Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency. (shrink)

Recently, a number of philosophers have begun to question the commonly held view that choice or voluntary control is a precondition of moral responsibility. According to these philosophers, what really matters in determining a person’s responsibility for some thing is whether that thing can be seen as indicative or expressive of her judgments, values, or normative commitments. Such accounts might therefore be understood as updated versions of what Susan Wolf has called “real self views,” insofar as they attempt to ground (...) an agent’s responsibility for her actions and attitudes in the fact (when it is a fact) that they express who she is as a moral agent. As such, they seem to be open to some of the same objections Wolf originally raised to such accounts, and in particular to the objection that they cannot license the sorts of robust moral assessments involved in our current practices of moral responsibility. My aim in this paper is to try to respond to this challenge, by clarifying the kind of robust moral assessments I take to be licensed by (at least some) non-volitional accounts of responsibility and by explaining why these assessments do not in general require the agent to have voluntary control over everything for which she is held responsible. I also argue that the limited applicability of the distinction between “bad agents” and “blameworthy agents” on these accounts is in fact a mark in their favor. (shrink)

International research, sponsored by for-profit companies, is regularly criticised as unethical on the grounds that it exploits research subjects in developing countries. Many commentators agree that exploitation occurs when the benefits of cooperative activity are unfairly distributed between the parties. To determine whether international research is exploitative we therefore need an account of fair distribution. Procedural accounts of fair bargaining have been popular solutions to this problem, but I argue that they are insufficient to protect against exploitation. I argue instead (...) that a maximin principle of fair distribution provides a more compelling normative account of fairness in relationships characterised by extreme vulnerability and inequality of bargaining potential between the parties. A global tax on international research would provide a mechanism for implementing the maximin account of fair benefits. This model has the capacity to ensure fair benefits and thereby prevent exploitation in international research. (shrink)

Philosophers traditionally recognize two main features of mental states: intentionality and phenomenal consciousness. To a first approximation, intentionality is the aboutness of mental states, and phenomenal consciousness is the felt, experiential, qualitative, or "what it's like" aspect of mental states. In the past few decades, these features have been widely assumed to be distinct and independent. But several philosophers have recently challenged this assumption, arguing that intentionality and consciousness are importantly related. This article overviews the key views on the relationship (...) between consciousness and intentionality and describes our favored view, which is a version of the phenomenal intentionality theory, roughly the view that the most fundamental kind of intentionality arises from phenomenal consciousness. (shrink)

This article examines how the formation of markets in bottled water has relied on assembling a particular subject: the subject of hydration. The discourse of hydration is a conspicuous feature of efforts to market bottled water, allowing companies to appeal to scientifically framed principles and ideas of health in order to position the product as an essential component in self-health and healthy lifestyles. Alongside related principles, such as the ‘8 × 8 rule’, hydration has done much to establish new practices (...) of water drinking and consumption in which the consumer appears to be always at risk of dehydration and must engage in practices of ‘frequent sipping’. This article traces the emergence of the concept of hydration from its origins in exercise science and explores its circulation, contemporary uses and purchase. I argue that the appeal to biomedical languages and concepts found in the discourse of hydration connects with much broader ways of conceiving and acting upon the self that have become prevalent in contemporary society – what Rose and Novas call ‘biological citizenship’ – indicating how the ensemble of hydration participates in wider-ranging transformations in forms of rule. The story of hydration reveals how biomedical techniques of the self can be made to double up as ‘market devices’ by offering specific procedures for assessing the self and calculating the body’s needs. In order to grasp these developments, I position the health sciences, and health and fitness in particular, as a potent site of popular culture in which bodies learn to be affected by the procedures of scientific experiment. A critical grasp of this context is best enabled, I argue, by situating the producers and consumers of scientific principles and commercial products as embodied and looking at their interconnection in processes of emergence. Through these means, we can begin to develop a fully materialized account of the question: how have we become so thirsty? (shrink)

This introduction outlines the importance that Hans-Georg Backhaus’s transcript of Adorno’s 1962 seminar on ‘Marx and the Basic Concepts of Sociological Theory’ has for shedding light on the relationship between Adorno’s critical theory and the critique of political economy. PartIsignals the importance of the seminar by assaying the Anglophone scholarship on Adorno. PartIIcontextualises the seminar in the development of his thought. PartsIIIandIVfocus on what the transcript tells us about Adorno’s interpretation of Marx and the importance this interpretation held for Adorno’s (...) critical social theory. PartVpoints to the influence this interpretation of the critique of political economy had on the formation of the New German Reading of Marx. (shrink)

There are many different interpretations of what the family should be – its desired member composition, its primary purpose, and its cultural significance – and many different examples of what families actually look like across the globe. I examine the most paradigmatic conceptions of the family that are based upon the supposed primary purpose that the family serves for its members and for the state. I then suggest that we ought to reconceptualize how we understand and define the family in (...) an effort to move away from these paradigmatic conceptions. This approach requires that we examine the way(s) in which the family has been defined descriptively – that is, how families have been defined historically – in an effort to determine what a normative theory of the family might look like. The goal of this inquiry is to define a family in terms of what it ought to be – a goal that moves our understanding of the family to a new conceptual landscape. I then present my own account of familial relations that aims to capture a normative understanding of the unique primary purpose that the family serves for its members. (shrink)

The concept of ‘ownership’ is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about current data use and the disenfranchisement of citizens and collectives in the existing data ecosystem. But exactly which core interests and concerns ownership claims allude to remains opaque. Too often, we jump straight from ‘ownership’ to ‘private property’ and conclude ‘the data (...) belongs to the patient’. I will argue here that private property is only one type of relevant relationship between people, communities and data. There are several reasons to doubt that conceptualising data as private property presents a compelling response to concerns about clinical data ownership. In particular I argue that clinical data are co-constructed, so a property account would fail to confer exclusive rights to the patient. A non-property account of ownership acknowledges that the data are ‘about the patient’, and therefore the patient has relevant interests, without jumping to the conclusion that the data ‘belongs to the patient’. On this broader account of ownership, the relevant harm is the severing of the connection between the patient and their data, and the solution is to re-engage and re-connect patients to the data research enterprise. (shrink)

Modernity has challenged the ancient ideal of a universal quest for wisdom, and today's world of conflicting cultures and values has raised further doubts regarding the possibility of objective ethical standards. Robert Kane refocuses the debate on the philosophical quest for wisdom, and argues that ethical principles about right action and the good life can be seen to emerge from that very quest itself. His book contends that the search for wisdom involves a persistent striving to overcome narrowness of (...) vision that comes from the inevitable limitations of finite points of view. When applied to questions of value and the good life, this striving has ethical implications about the way we should treat ourselves and others. This study argues for the merits of this central thesis against alternative theories in contemporary normative ethics, and discusses its practical applications for social ethics, political philosophy, law and moral education. (shrink)

There is increasing attention to the centrality of idealization in science. One common view is that models and other idealized representations are important to science, but that they fall short in one or more ways. On this view, there must be an intermediary step between idealized representation and the traditional aims of science, including truth, explanation, and prediction. Here I develop an alternative interpretation of the relationship between idealized representation and the aims of science. In my view, continuing, widespread idealization (...) calls into question the idea that science aims for truth. I argue that understanding must replace truth as the ultimate epistemic aim of science. Additionally, science has a wide variety aims, epistemic and non-epistemic, and these aims motivate different kinds of scientific products. Finally, I show how these diverse aims---all rather distant from truth---result in the expanded influence of social values on science. (shrink)

The concept of hierarchical organization is commonplace in science. Subatomic particles compose atoms, which compose molecules; cells compose tissues, which compose organs, which compose organisms; etc. Hierarchical organization is particularly prominent in ecology, a field of research explicitly arranged around levels of ecological organization. The concept of levels of organization is also central to a variety of debates in philosophy of science. Yet many difficulties plague the concept of discrete hierarchical levels. In this paper, we show how these difficulties undermine (...) various implications ascribed to hierarchical organization, and we suggest the concept of scale as a promising alternative to levels. Investigating causal processes at different scales offers a way to retain a notion of quasi-levels that avoids the difficulties inherent in the classic concept of hierarchical levels of organization. Throughout, our focus is on ecology, but the results generalize to other invocations of hierarchy in science and philosophy of science. (shrink)

In this paper I discuss two questions. What does Kant understand by mechanical explanation in the Critique of judgment? And why does he think that mechanical explanation is the only type of the explanation of nature available to us? According to the interpretation proposed, mechanical explanations in the Critique of judgment refer to a particular species of empirical causal laws. Mechanical laws aim to explain nature by reference to the causal interaction between the forces of the parts of matter and (...) the way in which they form into complex material wholes. Just like any other empirical causal law, however, mechanical laws can never be known with full certainty. The conception according to which we can explain all of nature by means of mechanical laws, it turns out, is based on what Kant calls ‘regulative’ or ‘reflective’ considerations about nature. Nothing in Kant’s Critique of judgment suggests that these considerations can ever be justified by reference to how the natural world really is. I suggest that what, upon first consideration, appears to be a thoroughly mechanistic conception of nature in Kant is much more limited than one might have expected. (shrink)

The purpose of this article is to show that animal rights are not necessarily at odds with the use of animals for research. If animals hold basic moral rights similar to those of humans, then we should consequently extend the ethical requirements guiding research with humans to research with animals. The article spells out how this can be done in practice by applying the seven requirements for ethical research with humans proposed by Ezekiel Emanuel, David Wendler and Christine Grady to (...) animal research. These requirements are i) social value, ii) scientific validity, iii) independent review, iv) fair subject selection, v) favorable risk-benefit ratio, vi) informed consent, and vii) respect for research subjects. In practice, this means that we must reform the practice of animal research to make it more similar to research with humans, rather than completely abolish the former. Indeed, if we banned animal research altogether, then we would also deprive animals of its potential benefits – which would be ethically problematic. (shrink)

The purpose of this study is to examine how faith-led practices in family firms affect organizational stewardship. Current studies highlight the relevance of religious adherence for family businesses, yet provide limited understanding of how this shapes the key traits of these organizations. Drawing on six autobiographies of family business leaders who openly express their adherence to their faith, and adopting an open-systems analysis of these autobiographies, we demonstrate that faith-led values influence organizational and leadership practices. Overall, our study suggests that (...) the influence of religious beliefs in the organizational practices of family businesses have greater repercussions than previously thought. By introducing a faith-led approach to stewardship, we enrich the theoretical discussion around stewardship and the relevance of religion in family business. (shrink)

The purpose of this study is to examine how faith-led practices in family firms affect organizational stewardship. Current studies highlight the relevance of religious adherence for family businesses, yet provide limited understanding of how this shapes the key traits of these organizations. Drawing on six autobiographies of family business leaders who openly express their adherence to their faith, and adopting an open-systems analysis of these autobiographies, we demonstrate that faith-led values influence organizational and leadership practices. Overall, our study suggests that (...) the influence of religious beliefs in the organizational practices of family businesses have greater repercussions than previously thought. By introducing a faith-led approach to stewardship, we enrich the theoretical discussion around stewardship and the relevance of religion in family business. (shrink)

In this paper, I first outline the view developed in my recent book on the role of idealization in scientific understanding. I discuss how this view leads to the recognition of a number of kinds of variability among scientific representations, including variability introduced by the many different aims of scientific projects. I then argue that the role of idealization in securing understanding distances understanding from truth, but that this understanding nonetheless gives rise to scientific knowledge. This discussion will clarify how (...) my view relates to three other recent books on understanding by Henk de Regt, Catherine Elgin, and Kareem Khalifa. (shrink)

Most jurisdictions require that a mental capacity assessment be conducted using a functional model whose definition includes several abilities. In England and Wales and in increasing number of countries, the law requires a person be able to understand, to retain, to use or weigh relevant information and to communicate one’s decision. But interpreting and applying broad and vague criteria, such as the ability ‘to use or weigh’ to a diverse range of presentations is challenging. By examining actual court judgements of (...) capacity, we previously developed a descriptive typology of justifications used in the application of the Mental Capacity Act criteria. We here critically optimise this typology by showing how clear definitions—and thus boundaries—between the criteria can be achieved if the ‘understanding’ criterion is used narrowly and the multiple rationales that fall under the ability to ‘use or weigh’ are specifically enumerated in practice. Such a typology-aided practice, in theory, could make functional capacity assessments more transparent, accountable, reliable and valid. It may also help to create targeted supports for decision making by the vulnerable. We also discuss how the typology could evolve legally and scientifically, and how it lays the groundwork for clinical research on the abilities enumerated by the MCA. No data are available. This paper does not report any original data. (shrink)

Despite the recent proliferation of scientific, clinical, and narrative accounts of auditory verbal hallucinations, the phenomenology of voice hearing remains opaque and undertheorized. In this article, we outline an interdisciplinary approach to understanding hallucinatory experiences which seeks to demonstrate the value of the humanities and social sciences to advancing knowledge in clinical research and practice. We argue that an interdisciplinary approach to the phenomenology of AVH utilizes rigorous and context-appropriate methodologies to analyze a wider range of first-person accounts of AVH (...) at 3 contextual levels: cultural, social, and historical; experiential; and biographical. We go on to show that there are significant potential benefits for voice hearers, clinicians, and researchers. These include informing the development and refinement of subtypes of hallucinations within and across diagnostic categories; “front-loading” research in cognitive neuroscience; and suggesting new possibilities for therapeutic intervention. In conclusion, we argue that an interdisciplinary approach to the phenomenology of AVH can nourish the ethical core of scientific enquiry by challenging its interpretive paradigms, and offer voice hearers richer, potentially more empowering ways to make sense of their experiences. (shrink)

A short story exploring cloning and the Teletransporter Thought Experiment. Rather than abstract consideration, the focus is on the first-personal experience.

Causal accounts of scientific explanation are currently broadly accepted (though not universally so). My first task in this paper is to show that, even for a causal approach to explanation, significant features of explanatory practice are not determined by settling how causal facts bear on the phenomenon to be explained. I then develop a broadly causal approach to explanation that accounts for the additional features that I argue an explanation should have. This approach to explanation makes sense of several aspects (...) of actual explanatory practice, including the widespread use of equilibrium explanations, the formulation of distinct explanations for a single event, and the tight relationship between explanations of events and explanations of causal regularities. (shrink)

I argue for the unity of imagination in two prima facie diverse contexts: experiences of beauty and achievements of understanding. I develop my argument in three steps. First, I begin by describing a type of aesthetic experience that is grounded in a set of imaginative activities on the part of the person having the experience. Second, I argue that the same set of imaginative activities that grounds this type of aesthetic experience also contributes to achievements of understanding. Third, I show (...) that my unified account of imagination has important implications: it sheds light on two puzzling phenomena, the aesthetic value of science and the cognitive value of art. (shrink)

The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when research is judged to be of (...) particular value. However, several different terms are used to refer to this value, indicating a lack of conceptual clarity regarding the appropriate test for access to health data for research without consent. In this paper we do three things. First we describe the current confusion and instability in terminology relating to public interest in the context of consent waivers. Second we argue for harmonisation of terminology on the grounds of clarity, transparency and consistency. Third we argue that the term ‘public interest’ best reflects the normative work required to justify consent waivers because it is the broadest of the competing terms. ‘Public interest’ contains within its scope positive and negative implications of a study, as well as welfare, justice and rights considerations. In making this argument, we explain the normative basis for consent waivers, and provide a starting place for further discussion about the precise conditions in which a given study can be said to advance the public interest. Ipsos MORI study found that: … the public would be broadly happy with administrative data linking for research projects provided Those projects have social value, broadly defined. Data are de-identified. Data are kept secure. Businesses are not able to access the data for profit. (shrink)

A common argument against explanatory reductionism is that higher‐level explanations are sometimes or always preferable because they are more general than reductive explanations. Here I challenge two basic assumptions that are needed for that argument to succeed. It cannot be assumed that higher‐level explanations are more general than their lower‐level alternatives or that higher‐level explanations are general in the right way to be explanatory. I suggest a novel form of pluralism regarding levels of explanation, according to which explanations at different (...) levels are preferable in different circumstances because they offer different types of generality, which are appropriate in different circumstances of explanation. (shrink)

Debate about cognitive science explanations has been formulated in terms of identifying the proper level(s) of explanation. Views range from reductionist, favoring only neuroscience explanations, to mechanist, favoring the integration of multiple levels, to pluralist, favoring the preservation of even the most general, high-level explanations, such as those provided by embodied or dynamical approaches. In this paper, we challenge this framing. We suggest that these are not different levels of explanation at all but, rather, different styles of explanation that capture (...) different, cross-cutting patterns in cognitive phenomena. Which pattern is explanatory depends on both the cognitive phenomenon under investigation and the research interests occasioning the explanation. This reframing changes how we should answer the basic questions of which cognitive science approaches explain and how these explanations relate to one another. On this view, we should expect different approaches to offer independent explanations in terms of their different focal patterns and the value of those explanations to partly derive from the broad patterns they feature. (shrink)

Public-private partnerships are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain—producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy to the commercialisation of public sector (...) health data, and questions of ownership, both of the data and any resulting intellectual property or products. As a specific example we consider the case of the UK National Health Service providing patient data to Google’s DeepMind AI program to develop a diagnostic app for kidney disease. This article is an application of the framework presented in this issue of ABR. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. We use four specific values to help analysis these issues: public benefit, stewardship, transparency and engagement. We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical big data. (shrink)