BackgroundSocial support plays an important role for health outcomes. Support for those living with chronic conditions may be particularly important for their health, and even for their survival. The role of support for the survival of cancer patients after receiving an allogeneic hematopoietic cell transplant is understudied. To better understand the link between survival and support, as well as different sources and functions of support, we conducted two studies in alloHCT patients. First, we examined whether social support is related to (...) survival. Second, we examined who provides which support and which specific support-related functions and tasks are fulfilled by lay caregivers and healthcare professionals.MethodsIn Study 1, we conducted a retrospective chart review of alloHCT patients and registered availability of a dedicated lay caregiver and survival. In Study 2, we prospectively followed patients after alloHCT from the same hospital, partly overlapping from Study 1, who shared their experiences of support from lay caregivers and healthcare providers in semi-structured in-depth interviews 3 to 6 months after their first hospital discharge.ResultsPatients with a dedicated caregiver had a higher probability of surviving to 100 days than patients without a caregiver, OR = 2.84, p = 0.042. Study 2 demonstrated the importance of post-transplant support due to patients’ emotional needs and complex self-care regimen. The role of lay caregivers extended to many areas of patients’ daily lives, including support for attending doctor’s appointments, managing medications and financial tasks, physical distancing, and maintaining strict dietary requirements. Healthcare providers mainly fulfilled medical needs and provided informational support, while lay caregivers were the main source of emotional and practical support.ConclusionThe findings highlight the importance of studying support from lay caregivers as well as healthcare providers, to better understand how they work together to support patients’ adherence to recommended self-care and survival. (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)

In Evangelium vitae, Pope St. John Paul II recognized that scientific progress would bring about new attacks on the dignity of the human person. Since that time, remarkable expansion in our knowledge and understanding of the human genome has brought forth questions of ownership rights via patents on human genes and related technology. This article argues that patenting human genes is incompatible with human dignity as it commodifies that which is priceless. In contrast, granting patents to manipulations of human genes (...) does not violate human dignity so long as it is utilized toward the common good. National Catholic Bioethics Quarterly 15.2 : 265–285. (shrink)

Eutychus Or the Future of the Pulpit Winifred Holtby Originally published in 1928 "Few wittier or wiser books have appeared in this stimulating series." Spectator "…delicious fun." Guardian A dialogue between Archbishop Fénelon, who stands for the great ecclesiastical tradition of preaching, Anthony, who stands for the more superficial intellectual movements in England and Eutychus, the ordinary man, investigates the nature of the pulpit. 134pp Apella or the Future of the Jews A Quarterly Reviewer Originally published in 1925 "Cogent, (...) because of brevity and magnificent prose style…It should not be missed." Spectator "…his arguments are a provocation to fruitful thinking." Morning Post This volume attempts to foresee the future of the Jews across the world, in the light of their previous history, the situation in Russia and the modern developments of Zionism. Inter-marriage, Jewish nationalism, Jewish religion and reform movements are among the subjects discussed. 90pp Vicisti, Galilaee? Or Religion in England: A Survey and a Forecast Edward B Powley Originally published in 1929 "…a book to be read, thought over, and discussed by all Christians who are not afraid to take the shutters down." Guardian Who was Jesus? How did Christianity begin, become orthodox, receive recognition as the state religion of the Roman Empire? What has been the history of Christianity in England? This volume discusses these questions and surveys of state of English churches in the early 20 th century. 114pp Perseus, of Dragons H F Scott Stokes Originally published in 1924 "A diverting little book…both quaint and various." Morning Post This volume gives an account of the dragon in history: in ancient Greece, in early Christendom and in modern Europe and explains how the dragon-story originated from the myths and customs of pre-historic Egypt. The author then maintains that in twentieth century England the dragon is not dead, that the characteristics of respectability, bigotry and cant represent the modern day dragon. 70pp. (shrink)

BackgroundIt is commonly reported by editors that it has become harder to recruit reviewers for peer review and that this is because individuals are being asked to review too often and are experiencing reviewer fatigue. However, evidence supporting these arguments is largely anecdotal.Main bodyWe examine responses of individuals to review invitations for six journals in ecology and evolution. The proportion of invitations that lead to a submitted review has been decreasing steadily over 13 years (2003–2015) for four of the (...) six journals examined, with a cumulative effect that has been quite substantial (average decline from 56% of review invitations generating a review in 2003 to just 37% in 2015). The likelihood that an invitee agrees to review declines significantly with the number of invitations they receive in a year. However, the average number of invitations being sent to prospective reviewers and the proportion of individuals being invited more than once per year has not changed much over these 13 years, despite substantial increases in the total number of review invitations being sent by these journals—the reviewer base has expanded concomitant with this growth in review requests.ConclusionsThe proportion of review invitations that lead to a review being submitted has been declining steadily for four of the six journals examined here, but reviewer fatigue is not likely the primary explanation for this decline. (shrink)

Pragmatic clinical trials offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question, yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as?pragmatic clinical trial collateral findings,? (...) or?PCT-CFs?. In this article, we explore the ethical considerations associated with the identification, assessment, and management of PCT-CFs, and how these considerations may vary based upon the attributes of a specific PCT. Our purpose is to map the terrain of PCT-CFs to serve as a foundation for future scholarship as well as policy-making and to facilitate careful deliberation about actual cases as they occur in practice. (shrink)

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

Human one‐to‐one tutoring has been shown to be a very effective form of instruction. Three contrasting hypotheses, a tutor‐centered one, a student‐centered one, and an interactive one could all potentially explain the effectiveness of tutoring. To test these hypotheses, analyses focused not only on the effectiveness of the tutors' moves, but also on the effectiveness of the students' construction on learning, as well as their interaction. The interaction hypothesis is further tested in the second study by manipulating the kind of (...) tutoring tactics tutors were permitted to use. In order to promote a more interactive style of dialogue, rather than a didactic style, tutors were suppressed from giving explanations and feedback. Instead, tutors were encouraged to prompt the students. Surprisingly, students learned just as effectively even when tutors were suppressed from giving explanations and feedback. Their learning in the interactive style of tutoring is attributed to construction from deeper and a greater amount of scaffolding episodes, as well as their greater effort to take control of their own learning by reading more. What they learned from reading was limited, however, by their reading abilities. (shrink)

Five experiments investigated how people use categories to make inductions about objects whose categorisation is uncertain. Normatively, they should consider all the categories the object might be in and use a weighted combination of information from all the categories: bet-hedging. The experiments presented people with simple, artificial categories and asked them to make an induction about a new object that was most likely in one category but possibly in another. The results showed that the majority of people focused on the (...) most likely category in making inductions, although there was a group of consistently normative responders who used information from both categories (about 25% of our college population). Across experiments the overall pattern of results suggests that performance in the task is improved not by understanding the underlying principles of bet-hedging but by increasing the likelihood that multiple categories are in working memory at the time of the induction. We discuss implications for improving everyday inductions. (shrink)

ObjectivesDuring their lifetimes, a majority of musicians experience playing-related musculoskeletal disorders. PRMD prevalence is tied to instrument choice, yet most studies examine heterogeneous groups of musicians, leaving some high-risk groups such as oboists understudied. This paper aims to ascertain the prevalence and nature of PRMDs in oboists, determine relevant risk factors, and evaluate the efficacy of treatment methods in preventing and remedying injuries in oboe players.MethodsA 10-question online questionnaire on PRMDs and their treatments was completed by 223 oboists. PRMDs were (...) compared across gender, weekly playing hours, career level, age, and years of playing experience.ResultsOf all respondents, 74.9% reported having had at least one PRMD in their lifetime. A majority of these injuries were of moderate to extreme severity. Females reported significantly more severe injuries than males. No significant effects of career level, age, or years of playing experience were observed. We found significant non-linear relationships between weekly playing hours and PRMD prevalence and severity. Injuries were most commonly on the right side of the body, with the right thumb, wrist, hand, and forearm being most affected in frequency and severity. Of those injuries for which recovery information was provided, only 26.1% of injuries were “completely recovered.” The perceived effectiveness of a few treatments tended to be ranked more highly than others.ConclusionThe oboists in this study experienced high rates of PRMD, particularly in the right upper extremities. Females and those playing 7-9 and 16-18 h per week reported a significantly higher severity of injuries than other groups. (shrink)

Responsible data management is a multifaceted topic involving standards within the research community regarding research design and the sharing of data as well as the collection, selection, analysis and interpretation of data. Transparency in the manipulation of images is increasingly important in order to avoid misrepresentation of research findings, and research oversight is also critical in helping to assure the integrity of the research process. Intellectual property issues both unite and divide academe and industry in their approaches to data management. (...) Central to the realization and promulgation of responsible data management is clear and careful communication of standards and expectations within the research community to trainees as well as among colleagues. These topics are examined and explored in depth in a special issue of Science and Engineering Ethics on responsible data management. (shrink)

This study investigates the procedural learning, retention, and reactivation of temporal sensorimotor sequences in children with and without developmental coordination disorder. Twenty typically-developing children and 12 children with DCD took part in this study. The children were required to tap on a keyboard, synchronizing with auditory or visual stimuli presented as an isochronous temporal sequence, and practice non-isochronous temporal sequences to memorize them. Immediate and delayed retention of the audio-motor and visuo-motor non-isochronous sequences were tested by removing auditory or visual (...) stimuli immediately after practice and after a delay of 2 h. A reactivation test involved reintroducing the auditory and visual stimuli after the delayed recall. Data were computed via circular analyses to obtain asynchrony, the stability of synchronization and errors. Firstly, an overall deficit in synchronization with both auditory and visual isochronous stimuli was observed in DCD children compared to TD children. During practice, further improvements were found for the audio-motor non-isochronous sequence compared to the visuo-motor non-isochronous sequence in both TD children and children with DCD. However, a drastic increase in errors occurred in children with DCD during immediate retention as soon as the auditory stimuli were removed. Reintroducing auditory stimuli decreased errors in the audio-motor sequence for children with DCD. Such changes were not seen for the visuo-motor non-isochronous sequence, which was equally learned, retained and reactivated in DCD and TD children. All these results suggest that TD children benefit from both auditory and visual stimuli to memorize the sequence, whereas children with DCD seem to present a deficit in integrating an audio-motor sequence in their memory. The immediate effect of reactivation suggests a specific dependency on auditory information in DCD. Contrary to the audio-motor sequence, the visuo-motor sequence was both learned and retained in children with DCD. This suggests that visual stimuli could be the best information for memorizing a temporal sequence in DCD. All these results are discussed in terms of a specific audio-motor coupling deficit in DCD. (shrink)

An engaging book if for no other reason than that it deliberately attempts to be refreshingly different from the mine-run of present-day books on ethics. It is also in many ways a persuasive book, although one suspects that the persuasiveness may be a function of a number of apparently novel distinctions and concepts, which upon reflection turn out to be somewhat uncritical. Still a third feature of the book is that, by way of illustrating the decisive role in ethics of (...) what Cua terms "the paradigmatic individual," two chapters are devoted to an examination of Confucius and Confucian ethics. Needless to say, this third feature is one which most contemporary writers on ethics would not have the competence thus to feature in their books, and which unhappily, this present reviewer does not have the competence even to comment on in his review! (shrink)

ABSTRACTPrevious research has demonstrated that anxious individuals attend to negative emotional information at the expense of other information. This is commonly referred to as attentional bias. The field has historically conceived of this process as relatively static; however, research by [Zvielli, A., Bernstein, A., & Koster, E. H. W.. Dynamics of attentional bias to threat in anxious adults: Bias towards and/or away? PLoS ONE, 9, e104025; Zvielli, A., Bernstein, A., & Koster, E. H. W.. Temporal dynamics of attentional bias. Clinical (...) Psychological Science, 3, 772–788.], and others, challenges this assumption by demonstrating considerable temporal variability in attentional bias amongst anxious individuals. Still, the mechanisms driving these temporal dynamics are less well known. Using a modified dot-probe task, the present study examined the impact of two relevant contextual variables- affective valence and trial repetition. Affective context was instantiated by the presentation of... (shrink)

In 1954 F. R. Leavis wrote to the Times Literary Supplement taking issue with one of its reviewers. The reviewer had contrasted Leavis's approach to Shakespeare with that of Empson and Bradley. The latter, the reviewer had said, ‘like the plain man, or the audience in a theatre, cannot help considering the situation [in one of Shakespeare's plays] as “actual” and the characters as “real”’. Leavis, the reviewer had implied, treats the situation and characters somewhat differently.

As automobile manufacturers have begun to design, engineer, and test autonomous driving systems of the future, brain imaging with functional near-infrared spectroscopy can provide unique insights about cognitive processes associated with evolving levels of autonomy implemented in the automobile. Modern fNIRS devices provide a portable, relatively affordable, and robust form of functional neuroimaging that allows researchers to investigate brain function in real-world environments. The trend toward “naturalistic neuroscience” is evident in the growing number of studies that leverage the methodological flexibility (...) of fNIRS, and in doing so, significantly expand the scope of cognitive function that is accessible to observation via functional brain imaging. While more than a decade’s worth of study in this field of fNIRS driving research has led to many interesting findings, the number of studies applying fNIRS during autonomous modes of operation is limited. To support future research that directly addresses this lack in autonomous driving research with fNIRS, we argue that a cogent distillation of the methods used to date will help facilitate and streamline this research of tomorrow. To that end, here we provide a methodological review of the existing fNIRS driving research, with the overarching goal of highlighting the current diversity in methodological approaches. We argue that standardization of these approaches will facilitate greater overlap of methods by researchers from all disciplines, which will, in-turn, allow for meta-analysis of future results. We conclude by providing recommendations for advancing the use of such fNIRS technology in furthering understanding the adoption of safe autonomous vehicle technology. (shrink)

The Criminal Cases Review Commission (CCRC) was the first publicly funded body created to investigate claims of wrongful conviction, with the power to refer cases to the Court of Appeal. In other countries, such as Australia, Canada and the United States, many regard the CCRC as the optimal solution to wrongful conviction and, for years, Innocence Projects in these countries have called for the establishment of a CCRC-style body in their own jurisdictions. However, it is now Innocence Projects which are (...) being introduced in England and Wales to try to assist applicants who are innocent but convicted. This article reviews why the CCRC was created, discusses the role of factual innocence within this body and within the criminal justice system generally and explores why Innocence Projects are being created in England and Wales, despite the presence of the CCRC. It explains how these different organizations may work together to assist factually innocent people who have been wrongly convicted, and the role Innocence Projects may play generally in criminal justice reform and legal education. (shrink)

In a study of the kin investment of aunts and uncles we show that the laterality effect expected as a result of paternity uncertainty is statistically reliable but somewhat smaller than the sex effect. Matrilateral aunts invest significantly more than patrilateral aunts, and the same is true for uncles. Regardless of laterality, however, aunts invest significantly more than uncles. Multivariate controls show that the matrilateral bias is fully independent of any age or distance confounds that might result from sex differences (...) in age at marriage or dispersal. We discuss our results in relation to recent findings on the kin investment of grandparents (Euler and Weitzel 1996). In addition, we propose a simple method for estimating the level of paternity uncertainty from kin investment data; application of this method to our data on aunts and uncles suggests that between 13% and 20% of children are not the offspring of their putative father. Our parallel analyses of Euler and Weitzel’s (1996) data on grandparental investment suggest a similar estimate, that paternity uncertainty lies between 9% and 17%. (shrink)

David Buller's recent book, Adapting Minds, is a philosophical critique of the field of evolutionary psychology. Buller argues that evolutionary psychology is utterly bankrupt from both a theoretical and an empirical point of view. Although Adapting Minds has been well received in both the academic press and the popular media, we argue that Buller's critique of evolutionary psychology fails.

Classic statements of research ethics advise against permitting physician-investigators to obtain consent for research participation from patients with whom they have preexisting treatment relationships. Reluctance about “dual-role” consent reflects the view that distinct normative commitments govern physician–patient and investigator–participant relationships, and that blurring the research–care boundary could lead to ethical transgressions. However, several features of contemporary research demand reconsideration of the ethics of dual-role consent. Here, we examine three arguments advanced against dual-role consent: that it creates role conflict for the (...) physician-investigator; that it can compromise the voluntariness of the patient-participant’s consent; and that it promotes therapeutic misconceptions. Although these concerns have merit in some circumstances, they are not dispositive in all cases. Rather, their force—and the ethical acceptability of dual-role consent—varies with features of the particular study. As research participation more closely approximates usual care, it becomes increasingly acceptable, or even preferable, for physicians to seek consent for research from their own patients. It is time for a more nuanced approach to dual-role consent. (shrink)

We face significant challenges in the translation of basic biomedical research into meaningful improvements in patients' health, moving research from “bench to bedside.” The federal government's ne...

Book Review of 'Ethics and AIDS in Africa: The Challenge to Our Thinking' By Anton A. van Niekerk and Loretta M. Kopelman (Eds).

In lieu of an abstract, here is a brief excerpt of the content:American Journal of Philology 124.3 (2003) 473-476 [Access article in PDF] Metamorphoses and Metamorphosis:A Brief Response David H. Porter Like Joseph Farrell, I found much to admire in Mary Zimmerman's Metamorphoses, 1 but I nonetheless left the theater disappointed. Given all that the play—and this production—had to offer, what was it that I looked for but did not find? Excerpts from the foreword to Cesare Pavese's Dialogues with Leucò (...) suggest an answer: What is more acutely disturbing than to see familiar stories troubled into new life?... The surest, and the quickest, way for us to arouse the sense of wonder is to stare, unafraid, at a single object. Suddenly—miraculously—it will look like something we have never seen before. 2For me, what Pavese describes did not happen in Metamorphoses: I found the play an imaginative retelling of Ovid, but I'd been hoping for a true metamorphosis. In terms of the play's most famous feature, the pool of water that serves as a central stage, I felt most of the time that figures I knew from Ovid were playing out their expected roles around and in this pool. My hope had been that this brilliant theatrical innovation might mirror a play in which Ovid's tales themselves take on liquid freedom and fluidity, plunging, as it were, into this central metaphor to emerge changed, unexpected, reborn.The distinction I draw is one I've found useful both in assessing modern versions of ancient myth for myself and in teaching such works. 3 Readers will undoubtedly vary widely as to their favorites among the growing list of such versions, but I expect most would agree that a handful, including perhaps Joyce's Ulysses, Rilke's Sonnets to Orpheus, [End Page 473] Strauss's Elektra, Yeat's "Leda and the Swan," and Picasso's "Guernica," fall into a special category: different as they are in genre, style, and approach, all strike us as works of artists who have so inhabited a myth, so made it part of themselves—and themselves part of it—that what emerges is totally their own, totally transformed: a re-creation. With each we feel that never before have we experienced the myth this way, and that never again will the myth be quite the same for us—precisely what a New York Times reviewer wrote about a version of Medea that was playing at the Classical Theater of Harlem in April 2002: "I suspect that no matter how many versions I see in the future, my perception of them all will be affected by the revelations here." 4Again, this is the sort of reaction that Metamorphoses, for all its virtues, did not elicit in me, and I would extend this exclusion to most other modern reworkings of ancient myth—among them Pavese's own Dialogues with Leucò, which, despite the penetrating insights of his foreword, strike me the same way—as charming, distinctive retellings, not revelations. The issue, I think, has to do with the depth and degree of an artist's immersion in a myth, something that goes well beyond the superficial test of how far the artist diverges from "the original." Eliot's and O'Neill's myth-based plays, for instance, or a novel like Updike's The Centaur, make radical changes in the names and settings of the ancient myths, but in contrast to Joyce's Ulysses, the changes feel artificial, incompletely realized—transpositions rather than transformations. In contrast, Odilon Redon's painting of Polyphemus as a mountainous crag from which a huge voyeuristic eye peers out springs directly from an image in the Odyssey—and yet has a nightmare quality that is indeed "like something we have never seen before." 5A musical analogy may be useful. Listeners reported that when Franz Liszt played Beethoven, he gave the impression at each performance [End Page 474] that he was creating the music anew. 6 And Edward Steuermann, Arnold Schoenberg's long-time colleague, once wrote, "Is not music, the great music, so much alive because it was... (shrink)

The 2015 Varsity Medical Ethics debate convened upon the motion: “This house believes nootropic drugs should be available under prescription”. This annual debate between students from the Universities of Oxford and Cambridge, now in its seventh year, provided the starting point for arguments on the subject. The present article brings together and extends many of the arguments put forward during the debate. We explore the current usage of nootropic drugs, their safety and whether it would be beneficial to individuals and (...) society as a whole for them to be available under prescription. The Varsity Medical Debate was first held in 2008 with the aim of allowing students to engage in discussion about ethics and policy within healthcare. The event is held annually and it is hoped that this will allow future leaders to voice a perspective on the arguments behind topics that will feature heavily in future healthcare and science policy. This year the Oxford University Medical Society at the Oxford Union hosted the debate. (shrink)