This paper describes a network of three interconnected, multidisciplinary research projects designed to investigate environmental health issues faced by First Nations in Canada. These projects, developed in collaboration with academia, used a participatory approach meant to build capacity, raise awareness, and initiate change. The first project, which began in British Columbia in 2008, gathered information on the traditional diet; for example, its composition, nutritional quality, and potential for chemical exposure. This 10-year, Canada-wide project served as (...) a model for two follow-up projects: one on biomonitoring and another on indoor air quality. All three projects provided community ownership over the data and communicated results in a culturally sensitive manner to encourage interest in research and initiate risk reduction activities. The Assembly of First Nations, a national advocacy organization representing over 630 First Nations communities across Canada, participated in all aspects of the research while coordinating communications and arranging timely dissemination of results. These projects showed how properly executed, community-based research can be a valuable tool for stimulating interest in scientific studies while promoting self-reliance, components often missing from academic research. (shrink)

Environmental health research produces scientific knowledge about environmental hazards crucial for public health and environmental justice movements that seek to prevent or reduce exposure to these hazards. The environment in environmental health research is conceptualized as the range of possible social, biological, chemical, and/or physical hazards or risks to human health, some of which merit study due to factors such as their probability and severity, the feasibility of their remediation, and injustice in their distribution. This paper (...) explores the ethics of identifying the relevant environment for environmental health research, as judgments involved in defining an environmental hazard or risk, judgments of that hazard or risk's probability, severity, and/ or injustice, as well as the feasibility of its remediation, all ought to appeal to non-epistemic as well as epistemic values. I illustrate by discussing the case of environmental lead, a housing-related hazard that remains unjustly distributed by race and class and is particularly dangerous to children. Examining a controversy in environmental health research ethics where researchers tested multiple levels of lead abatement in lead-contaminated households, I argue that the broader perspective on the ethics of environmental health research provided in the first part of this paper may have helped prevent this controversy. (shrink)

Quantitative health risk assessment is a procedure for estimating the likelihood that exposure to environmental contaminants will produce certain adverse health effects, most commonly cancer. One instance of its use has been a California air toxics public “right-to-know” law. This article examines the ways in which credible health risk measurements were produced and challenged during the implementation of the California public policy. Fieldwork and documentary analysis finds that stakeholders negotiated within the formal constraints of the risk (...) assessment procedures but still expressed their competing visions for the implementation of the risk communication policy. The abstract results of the method were contextualized according to different time frames and allocations of uncertainty. Furthermore, the article demonstrates that the political process privileged consistency of measurement over accuracy, revealing political negotiations at a fundamentally technical level. The struggle and variation in interpretations can be explained best by the demand to organize the program around the discordant values of democratic accountability and technical efficiency. (shrink)

Three decades of concern over consumption of potentially contaminated Great Lakes fish has led government agencies and public health proponents to implement risk assessment and management programs as a means of protecting the health of fishers and their families. While well-meaning in their intent, these programs––and much of the research conducted to support and evaluate them––were not designed to accommodate the understandings and concerns of the fish consumer. Results from a qualitative component of a multi-disciplinary, multi-year research project on (...) frequent (average 108 meals per year) consumers of Great Lakes fish tell the fishers’ side of the story. We present data from 87 tape recorded interviews conducted with Vietnamese, Chinese, and English-speaking participants that underscore the quality of freshly caught Great Lakes fish and the important social and cultural benefits of fish and fishing to the consumer. We also outline the participants’ understandings of risk from eating Great Lakes fish and the way in which fishers and their families manage this risk. The paper concludes with a discussion of these benefits, risks, and risk management strategies as ways that Great Lakes fish consumers “construct” rather than “perceive” risk. We advocate for risk assessment and management protocols that involve those who will be affected the most, such as frequent consumers of Great Lakes fish, from the initial “risk characterization” stage through to any necessary risk communication. (shrink)

This book shows how participatory research can provide tools to overcome the current epistemic and ethical challenges faced by traditional scientific approaches. Ever since Funtowicz and Ravetz proposed the notion of post-normal science, there has been a growing awareness of the limits of a form of knowledge production based only on the traditional scientific peer communities that excludes other social groups affected by its results and applications. The growing uncertainty and complexity posed by socio-ecological issues in the interactions between (...) science, society and decision making has revealed the importance of a social quality control over crucial decisions that rely on scientific research and the necessary democratization of knowledge to tackle sustainability and health concerns. Departing from a reinterpretation of Paulo Freire’s Pedagogy of the Oppressed, this volume shows how participatory research can contribute to reconnect science and society by extending peer communities through the incorporation of different forms of knowledge and different social actors into research projects. To do so, the author presents a critical review of different participatory research approaches, identifying the elements that distinguish a true participatory research from a traditional one, and proposing a taxonomy of the various participatory methodologies. The volume also analyzes a diversity of social practices and understandings that deal with an ecology of knowledge and its systemic characteristics. Moreover, it demonstrates that uncertainties can be integrated in dialogical processes that open possibilities for a myriad of outcomes. Participatory Research in the Post-Normal Age - Unsustainability and Uncertainties to Rethink Paulo Freire's Pedagogy of the Oppressed will be of interest to researchers working with participatory approaches in different fields like health, environmental sciences, and education, as well as to practitioners of action research concerned with scientific dilemmas and counter-hegemonic strategies. (shrink)

Conventional, positivist science is not well suited for addressing the contemporary risk landscape. To address high-uncertainty, high-stakes risks, Funtowicz and Ravetz have called for a postnormal science. Two key characteristics of postnormal science are the involvement of an extended peer community and the deliberation of extended facts. The health research community has responded to the shortcomings of normal science with approaches to field research, known collectively as community-based participatory research. A review of case literature shows that although CBPR (...) is not inherently postnormal, it can be friendly to a postnormal approach. A postnormal CBPR practice would rely more heavily on a deliberative process, which engages a broad range of expertise, including experts in normal science, in decisions about data collection, analysis, and actions. (shrink)

Background: Black, Asian and minority ethnic groups have a high need for organ transplantation but deceased donation is low. This restricts the availability of well-matched organs and results in relatively long waiting times for transplantation, with increased mortality risks. Objective: To identify barriers to organ donor registration and family consent among the BAME population, and to develop and evaluate a training intervention to enhance communication with ethnic minority families and identify impacts on family consent. Methods: Three-phase programme comprising community-based research (...) involving two systematic reviews examining attitudes and barriers to organ donation and effective interventions followed by 22 focus groups with minority ethnic groups; hospital-based research examining staff practices and influences on family consent through ethics discussion groups with staff, a study on intensive care units and interviews with bereaved ethnic minority families; and development and evaluation of a training package to enhance cultural competence among ICU staff. Setting: Community focus group study in eight London boroughs with high prevalence of ethnic minority populations. Hospital studies at five NHS hospital trusts. Participants: Community studies: 228 focus group participants; hospital studies: 35 nurses, 28 clinicians, 19 hospital chaplains, 25 members of local Organ Donation Committees, 17 bereaved family members; and evaluation: 66 health professionals. Data sources: Focus groups with community residents, systematic reviews, qualitative interviews and observation in ICUs, EDGs with ICU staff, bereaved family interviews and questionnaires for trial evaluation. Review methods: Systematic review and narrative synthesis. Results: Community studies: Organ Donor Register – different ethnic/faith and age groups were at varying points on the ‘pathway’ to organ donor registration, with large numbers lacking knowledge and remaining at a pre-contemplation stage. Key attitudinal barriers were uncertainties regarding religious permissibility, bodily concerns, lack of trust in health professionals and little priority given to registration, with the varying significance of these factors varying by ethnicity/faith and age. National campaigns focusing on ethnic minorities have had limited impact, whereas characteristics of effective educational interventions are being conducted in a familiar environment; addressing the groups’ particular concerns; delivery by trained members of the lay community; and providing immediate access to registration. Interventions are also required to target those at specific stages of the donation pathway. Hospital studies: family consent to donation – many ICU staff, especially junior nurses, described a lack of confidence in communication and supporting ethnic minority families, often reflecting differences in emotional expression, faith and cultural beliefs, and language difficulties. The continuing high proportion of family donation discussions that take place without the collaboration of a specialist nurse for organ donation reflected consultants’ views of their own role in family consent to donation, a lack of trust in SNODs and uncertainties surrounding controlled donations after circulatory death. Hospital chaplains differed in their involvement in ICUs, reflecting their availability/employment status, personal interests and the practices of ICU staff. Evaluation: professional development package – a digital versatile disk-based training package was developed to promote confidence and skills in cross-cultural communication. Initial evaluation produced positive feedback and significant affirmative attitudinal change but no significant difference in consent rate over the short follow-up period with requirements for longer-term evaluation. Limitations: Participants in the focus group study were mainly first-generation migrants of manual socioeconomic groups. It was not permitted to identify non-consenting families for interview with data regarding the consent process were therefore limited to consenting families. Conclusions: The research presents guidance for the effective targeting of donation campaigns focusing on minority ethnic groups and provides the first training package in cultural competence in the NHS. Future work: Greater evaluation is required of community interventions in the UK to enhance knowledge of effective practice and analysis of the experiences of non-consenting ethnic minority families. Funding: The National Institute for Health Research Programme Grants for Applied Research programme. (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 lieu of an abstract, here is a brief excerpt of the content:Democratizing Psychiatric ResearchRecognizing the Potential and the Limits of Experiential ExpertiseThe author reports no conflict of interests.First, I want to express my gratitude for such thoughtful and generative responses to the manuscript "Why Democratize Psychiatric Research?," which has been in development for several years and is the product of much reflection that has taken place in academic, advocacy, and interpersonal contexts. I am delighted to see such insightful (...) engagement with the piece and to have a chance to respond to both Drs. David Crepaz-Keay and Sam Fellowes here. Given that the authors raise such different questions within their commentaries, I consider each in turn.In his illuminating commentary, Crepaz-Keay makes three important points in response to the epistemic and ethical reasons I lay out as justifications for democratizing efforts in mental health research. First of all, Crepaz-Keay warns that there is "more subjectivity across much of medicine" than in the picture I've painted, and that we might do better to focus on this shared territory, taking up the goal of democratization across all of medicine, rather than risk "othering" psychiatry as uniquely subjective. In this way, Crepaz-Keay emphasizes, mental health service user researchers might "become leaders in progressive medical thinking."I appreciate this call to emphasize the ways in which the importance of subjective experiences cuts across all of medicine and to learn broad lessons from the pioneering participatory work that has been accomplished in the domain of mental health. I agree that much of medicine suffers from a focus on the objective to the neglect of the subjective, and wonder if this focus can sometimes create a distinct kind of worry in territories in which objective measures are widely available. Consider the focus on reducing the size of a tumor at all costs that can sometimes obscure important considerations related to what a good end of life might look like (Gawande, 2014). Particularly [End Page 143] within the process of determining what is worth measuring within research (and what is worth treating within clinical contexts), patient voices are essential to making an informed and beneficial decision. I agree with Crepaz-Keay here—this point applies to all realms of medicine.In contrast, I think other kinds of risks arise in domains in which objective measures are not widely available and therefore subjective reports of patients make up an essential part of any diagnosis or assessment. Another area I often think about is placebo studies, and in this space, stereotypes related to 'real' suffering and 'real' healing circulate widely (Friesen, 2019b). Largely, these stereotypes tend to support the importance and reality of that which occurs at the level of the physical or biological and take much less seriously suffering or healing which is thought to be located 'all in the head' (Friesen & Dionne, 2022). These biases also cut across medicine, influencing which patients are seen as trustworthy, dramatic, or worthy of one's compassion. I would argue that they show up especially in the setting of mental health care and research, in part because of the lack of objective measures and physiological explanations. A psychiatrized patient often has nothing physical or objective to point to with regard to their suffering, and so may be at the whim of a provider in relation to whether they are likely to be believed or discredited. As such, we must be especially alert to the unique risks that arise when evidence for suffering comes in a subjective form, and how efforts toward democratization might help reduce such risks.Second, Crepaz-Keay offers an essential intervention in relation to the importance of anti-racism within participatory practices in psychiatry. Although I do make mention of the lack of representation of racialized communities in participatory psychiatric research in discussing the important role that values play in the development of psychiatric knowledge, Crepaz-Keay accurately points out that this point related to representation is cross-cutting, and highly relevant to several of the other reasons I offer for why psychiatry research ought to be democratized. I am grateful for this invitation to look more broadly at how the exclusion of some voices from participatory efforts might apply across... (shrink)

This paper offers a contribution to ecophilosophy from the perspective of the scientific research of the environment. The problem considered in the paper deals with a specific issue of environmental risk, namely, the problem of radon ionizing radiation and the highest permissible security norms of it. This problem, now rarely discussed in ecological communities, is one of more important for humankind’s health and safe existence. The awareness of harmful and beneficial biological effects of various environmental factors is (...) a basic step towards ensuring the security of public health. The admissible norms of radon radiation are different in different countries. The article suggests possible causes of these differences and puts forward the thesis that today’s science alone is not a sufficient ground of resolving ecological problems. (shrink)

The coastal area of Bangladesh is one of the most ecologically productive and it contains a rich biodiversity which includes several species that are endemic to this region. Much attention has been focused on ship breaking industries in the coastal areas because of the threat they pose to this thriving biological communities along with their other environmental impacts and the perilous working environment of the workers. The coastal environment of Sitakunda is severely contaminated by various processes related to ship-breaking (...) i.e. the disposal of different toxic wastes into the sea water, deforestation by expanding ship breaking yard, changing land-use pattern and release of toxic substance into the soil. Moreover, the workers of this industry are exposed to an extremely risky and toxic working environment which makes them vulnerable to both physical and psychological disorder as well as to accidental deaths and injury. Still, workers embrace these risks for very poor wages and most of the profits go to the already rich businessmen. Despite various negativities, this industry has gained importance due to the increasing demand of raw material for re-rolling industries and employment opportunities for the people of the coastal areas. As this industry is indispensable due to its importance in the macro and micro economy of Bangladesh, a sustainable management approach should be taken to at least minimize the environmental and health impacts of ship breaking industries. The current paper aims to investigate the extent to which this industry is affecting the ship breaking yard labors and the environment, despite the growing concern nationally and internationally, and it uses both primary and secondary data. (shrink)

Children, because of age-related reasons, are a vulnerable population, and protecting their health is a social, scientific and emotional priority. The increased susceptibility of children and fetuses to environmental agents has been widely discussed by the scientific community. Children may experience different levels of chemical exposure than adults, and their sensitivity to chemical toxicities may be increased or decreased in comparison with adults. Such considerations also apply to unborn and newborn children. Therefore, research on children is necessary in both (...) clinical and environmental fields, to provide age-specific relevant data regarding the efficacy and safety of medical treatments, and regarding the assessment of risk from unintended environmental exposure. In this context, the stakeholders are many, including children and their parents, physicians and public health researchers, and the society as a whole, with its ethical, regulatory, administrative and political components. The important ethical issues are information of participants and consent to participate. Follow-up and protection of data should be discussed in the context of biobanks, where children obtain individual rights when they become adults. It is important to realise that there are highly variable practices within European countries, which may have, in the past, led to differences in practical aspects of research in children. A number of recommendations are provided for research with children and environmental health. Environmental research with children should be scientifically justified, with sound research questions and valid study protocols of sufficient statistical power, ensuring the autonomy of the child and his/her family at the time of the study and later in life, if data and samples are used for follow-up studies. When children are enrolled, we recommend a consent dyad, including parental informed consent and the child’s assent and/or informed consent from older minors. For evaluation of the studies including children, a paediatrician should always be involved in the research ethics committee. (shrink)

Children, because of age-related reasons, are a vulnerable population, and protecting their health is a social, scientific and emotional priority. The increased susceptibility of children and fetuses to environmental agents has been widely discussed by the scientific community. Children may experience different levels of chemical exposure than adults, and their sensitivity to chemical toxicities may be increased or decreased in comparison with adults. Such considerations also apply to unborn and newborn children. Therefore, research on children is necessary in both (...) clinical and environmental fields, to provide age-specific relevant data regarding the efficacy and safety of medical treatments, and regarding the assessment of risk from unintended environmental exposure. In this context, the stakeholders are many, including children and their parents, physicians and public health researchers, and the society as a whole, with its ethical, regulatory, administrative and political components. The important ethical issues are information of participants and consent to participate. Follow-up and protection of data should be discussed in the context of biobanks, where children obtain individual rights when they become adults. It is important to realise that there are highly variable practices within European countries, which may have, in the past, led to differences in practical aspects of research in children. A number of recommendations are provided for research with children and environmental health. Environmental research with children should be scientifically justified, with sound research questions and valid study protocols of sufficient statistical power, ensuring the autonomy of the child and his/her family at the time of the study and later in life, if data and samples are used for follow-up studies. When children are enrolled, we recommend a consent dyad, including parental informed consent and the child’s assent and/or informed consent from older minors. For evaluation of the studies including children, a paediatrician should always be involved in the research ethics committee. (shrink)

Background There are legal protections for nurse researchers at public universities who employ community-based participatory research (CBPR) in research about social or health inequities. Dissemination of CBPR research data by researchers or participants may divulge unjust laws and create an imperative for university involvement. Research Question What are United States-based legal dissemination protections for CBPR health equity nurse researchers? Research Design Three case examples employing CBPR are examined: 1) a mixed methods study with participants reporting illegal discrimination in a (...) municipal initiative about capacity building in community-based organizations serving children; 2) a visual methods study exposing potential clean air law violations in environmental justice research; and 3) a study examining workload violations and illegal discrimination among hotel workers. Participants and Research Context The cases involved participants from protected social class backgrounds. The research is described with respect to: background, funding, research purpose, and research team; research participants’ power and legal vulnerability; dissemination of relevant research information balancing vulnerability and power; research dissemination issues; potential legal issues involved; and laws researchers may use. Ethical Considerations IRB approval was obtained for the studies. Using a social justice ethical framework, studies highlight actual or potential legal aspects of data dissemination in the context of gathering data about injustice. Findings Legal protections for research data dissemination, whistleblower protection, research advancement protection, anti-harassment protection, false claims, defamation, and visual data liabilities are described. Conclusion Knowledge of legal research data dissemination protections is an essential competency for nurse researchers invested in uplifting social justice. (shrink)

In this paper we argue the need to reimagine research ethics frameworks to include notions of environmental sustainability. While there have long been calls for healthcareethics frameworks and decision-making to include aspects of sustainability, less attention has focused on howresearchethics frameworks could address this. To do this, we first describe the traditional approach to research ethics, which often relies on individualised notions of risk. We argue that we need to broaden this notion of individual risk to (...) consider issues associated with environmental sustainability. This is because research is associated with carbon emissions and other environmental impacts, both of which cause climate change health hazards. We introduce how bioethics frameworks have considered notions of environmental sustainability and draw on these to help develop a framework suitable for researchers. We provide a case study of data-driven health research to apply our framework. (shrink)

Researchers of the Northeast Ethics Education Partnership at Brown University sought to improve an understanding of the ethical challenges of field researchers with place-based communities in environmental studies/sciences and environmental health by disseminating a questionnaire which requested information about their ethical approaches to these researched communities. NEEP faculty sought to gain actual field guidance to improve research ethics and cultural competence training for graduate students and faculty in environmental sciences/studies. Some aspects of the ethical challenges in field (...) studies are not well-covered in the literature. More training and information resources are needed on the bioethical challenges in environmental field research relating to maximizing benefits/reducing risks to local inhabitants and ecosystems from research; appropriate and effective group consent and individual consent processes for many diverse communities in the United States and abroad; and justice considerations of ensuring fair benefits and protections against exploitation through community-based approaches, and cultural appropriateness and competence in researcher relationships. (shrink)

For many innovations, oversight fits nicely within existing governance mechanisms; nevertheless, others pose unique public health, environmental, and ethical challenges. Synthetic artemisinin, for example, has many precursors in laboratory‐developed drugs that emulate natural forms of the same drug. The policy challenges posed by synthetic artemisinin do not differ significantly in kind from other laboratory‐formulated drugs. Synthetic biofuels and gene drives, however, fit less clearly into existing governance structures. How many of the new categories of products require new forms of (...) regulatory oversight, or at least extensive forms of testing, remains unclear.Any effort to improve the governance of synthetic biology should start with a rich understanding of the different possible science‐policy interfaces that could help to inform governance. CBA falls into a subset of the overall range of possibilities, and which interface is appropriate may turn out to depend on context, on the demands of the decision at hand. In what follows, we lay out a typology of interfaces. After that, we turn to the question of how to draw upon the range of possible interfaces and effectively address the factual and moral complexities of emerging technologies. We propose a governance model built around structures that we call “governance coordinating committees.” GCCs are intended to be mechanisms for accommodating the complexities of innovations that have far‐ranging societal impacts. The production of biofuels, for example, could contaminate water supplies and have a destructive environmental impact if not managed correctly. The introduction of a gene drive could have economic and environmental impacts that are not restricted to one nation. Forging appropriate means for determining and evaluating those societal impacts, to the best of a corporation's, industry's, or government's ability, is central to responsible research and innovation. Public policy must be shaped in a manner that accommodates as many concerns as possible and minimizes risks. (shrink)

On March 28, 2017, the national Academy of Sciences, Engineering, and Medicine released a much-anticipated report on the Environmental Protection Agency's controlled human inhalation exposure studies. To understand the genesis of the document, a quick review of recent events is in order.Prior to 2006, the EPA adopted the Common Rule for intramural or extramural research funded by the agency.1 Although the EPA did not have a formal policy that applied to research sponsored by private companies, it applied scientific and (...) ethical standards to these studies on a case-by-case basis. In the 1990s, in support of requests to the agency to loosen its restrictions on pesticide residues on... (shrink)

Prominent tuberculosis (TB) actors are invoking solidarity to motivate and justify collective action to address TB, including through intensified development and implementation (D&I) of technologies such as drugs and diagnostics. We characterize the ethical challenges associated with D&I of new TB technologies by drawing on stakeholder perspectives from 23 key informant interviews and we articulate the ethical implications of solidarity for TB technology D&I. The fundamental ethical issue facing TB technological D&I is a failure within and beyond the TB community (...) to stand in solidarity with persons with TB in addressing the complex sociopolitical contexts of technological D&I. The failure in solidarity relates to two further ethical challenges raised by respondents: skewed power dynamics that hinder D&I and uncertainties around weighing risks and benefits associated with new technologies. Respondents identified advocacy and participatory research practices as necessary to address such challenges and to motivate sustained collective action to accelerate toward TB elimination. We present the first empirical examination of bioethical accounts of solidarity in public and global health. Our study suggests that solidarity allows us better to understand and address the ethical challenges that arrest the D&I of new TB technologies. Solidarity lends credence to policies and practices that address the relational nature of illness and health through collective action. (shrink)

Vietnam, with a geographical proximity and a high volume of trade with China, was the first country to record an outbreak of the new Coronavirus disease (COVID-19), caused by the Severe Acute Respiratory Syndrome Coronavirus 2 or SARS-CoV-2. While the country was expected to have a high risk of transmission, as of April 4, 2020—in comparison to attempts to contain the disease around the world—responses from Vietnam are being seen as prompt and effective in protecting the interests of (...) its citizens, with 239 confirmed cases and no fatalities. This study analyzes the situation in terms of Vietnam’s policy response, social media and science journalism. A self-made web crawl engine was used to scan and collect official media news related to COVID-19 between the beginning of January and April 4, yielding a comprehensive dataset of 14,952 news items. The findings shed light on how Vietnam—despite being under-resourced—has demonstrated political readiness to combat the emerging pandemic since the earliest days. Timely communication on any developments of the outbreak from the government and the media, combined with up-to-date research on the new virus by the Vietnamese science community, have altogether provided reliable sources of information. By emphasizing the need for immediate and genuine cooperation between government, civil society and private individuals, the case study offers valuable lessons for other nations concerning not only the concurrent fight against the COVID-19 pandemic but also the overall responses to a public health crisis. (shrink)

The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides (...) a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience. (shrink)

Mosquito-borne diseases take a tremendous toll on human populations, especially in developing nations. In the last decade, scientists have developed mosquitoes that have been genetically modified to prevent transmission of mosquito-borne diseases, and field trials have been conducted. Some mosquitoes have been rendered infertile, some have been equipped with a vaccine they transmit to humans, and some have been designed to resist diseases. This article focuses on ethical issues raised by field trials of disease-resistant, genetically modified mosquitoes. Some of (...) these issues include: protecting the public and the environment from harm, balancing benefits and risks, collaborating with the local community, avoiding exploitation, and safeguarding the rights and welfare of research subjects. One of the most difficult problems involves protecting the welfare of community members who will be impacted by the release of mosquitoes but who are not enrolled in the study as research subjects. To address this concern, field trials should take place only when the targeted disease is a significant public health problem in an isolated area, the benefits of the trial for the community are likely to outweigh the risks, community leaders approve of the trial, and there are measures in place to protect the welfare of un-enrolled community members, such as informing the community about the study and offering free treatment to people who contract mosquito-borne diseases. Since the justification of any field trial depends on a careful examination of the scientific and ethical issues, proposed studies should be evaluated on a case-by-case basis. (shrink)

In a wide variety of contexts, individuals face a risk of being physically harmed by the conduct of others in the community. The extent to which the government protects individuals from such harmful behavior largely depends on the combined effect of administrative regulation, criminal law, and tort law. Unless these different departments are coordinated, the government cannot ensure that individuals are adequately secure from the cumulative threat of physical harm. What is adequate for this purpose depends on the underlying (...) entitlement to physical security. What one has lost for purposes of legal analysis depends on what one what was entitled to in the first instance. Consequently, any mode of safety regulation that requires an assessment of losses or costs ultimately depends on a prior specification of entitlements. For reasons of history and federalism, the entitlement in the United States can be derived from the common law of torts. In addition to establishing how costs should be measured, the tort entitlement also quantifies any distributive inequities that would be created by a safety standard and shows how they can be redressed within the safety regulation. When applied in this manner, the tort entitlement to physical security promotes substantive consistency across the different departments of law by serving as the distributive basis for environmental, health, and safety regulations that operate entirely outside of the tort system. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The National Commission on AIDSDonald S. Goldman (bio) and Jeff Stryker (bio)A decade after the first cases were recognized in the United States, AIDS continues to vex policymakers and fascinate the public. It has been said that AIDS acts as a prism, refracting a spectrum of controversial topics. For bioethicists, these topics include: equity in the allocation of resources for treatment and research; forgoing life-sustaining care and proxy (...) decision making; informed consent in the context of HIV testing and screening; the ethical duties of health care workers to provide care for persons with HIV disease; and competing obligations of health care professionals to patients and to third parties who may be put at risk.The Role of CommissionsIf AIDS is the quintessential case study for bioethicists, it is a potential quagmire for politicians. The association of HIV disease with drug use and sexual behavior makes it a topic that all but the most courageous (or the most homophobic) politicians shy away from. A frequent political response is to form a commission.Alexander Capron, who was executive director of the President's Commission for the Study of Ethical Problems in Medicine, has described some roles commissions play: a watchdog, overseeing the work of particular government agencies; a crucible, providing a means for "publicly hammering out conclusions on controversial issues when consensus, both in the public and in the relevant disciplines, is not yet apparent"; and "a lightning rod for public concern—or viewed less charitably, dumping ground for an issue that is too difficult for the ordinary political process to handle" (Capron 1983, p. 9).Nearly every state has created a gubernatorial-level task force or commission on AIDS. The National Commission on AIDS was established under the Health Omnibus Program Extension (HOPE) Act of 1988, which was signed by President Reagan on November 4, 1988. The official charter of the commission was approved August 2, 1989 and its original two-year term was extended for a third year. The mission statement crafted by the commission to reflect its Congressional mandate reads: [End Page 339]The National Commission on Acquired Immune Deficiency Syndrome is an independent body of 15 members created to advise the President and Congress. The Commission seeks to build a broad public understanding on the magnitude, scope and urgency of the HIV/AIDS epidemic; provide and inspire leadership at all levels of both the public and private sectors; empower individuals and communities; and advocate for effective, cooperative and non-discriminatory resources required for prevention, comprehensive care, and the research necessary to halt the epidemic.As the mission statement implies, the National Commission on AIDS has viewed itself from the outset not only as a crucible for policy analysis, but also as a forum for those affected by HIV disease. In site visits and hearings the commissioners have met with hundreds of people living with HIV disease, and with caregivers on the front lines. This odyssey has taken the commission on visits to homeless shelters in New York City; to "shooting galleries" where intravenous drug users congregate in Seattle; to Native American communities in four states; to private homes in rural Georgia; and to hospitals, HIV antibody testing centers, drug treatment clinics, and hemophilia treatment centers throughout the nation. It quickly became clear during the commission's travels that HIV disease cannot be understood outside the context of the racism, homophobia, poverty and unemployment that provide the medium that fosters its spread. It also became apparent that issues of HIV prevention, care and treatment, and clinical research are inextricably intertwined and must be dealt with as such.Early InitiativesUnder the leadership of Chairperson June Osborn and Vice-chairperson David Rogers, the commission decided that the problems it saw in its first few meetings were too urgent to await a full-length annual report. Hence the commission entered the fray with a series of brief interim reports on particular aspects of AIDS. These reports enabled the commission to draw attention to urgent problems of limitations in access to health care and to underscore the plight of people with HIV disease who might otherwise garner little media attention, such as prisoners and drug users (National Commission... (shrink)

Context: Participatory arts-based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled. Objective: Using the current literature on arts-based health research as a foundation, (...) this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences. Results: We present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in-practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research. Conclusion: Adequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way. Patient or Public Contribution: The issues reviewed are largely based on the authors' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages. (shrink)

Over the past several decades, urban community gardens have arisen in diverse and economically compromised neighborhoods across the U.S. as part of multiple environmental justice efforts. Urban community gardens have enabled users to mitigate the effects of many environmental injustices such as the impact of food deserts, nutrient poor food found at convenience stores, and pesticide laden grocery items. While these benefits have promulgated across the U.S., community gardens are also well known to be located in historically contaminated (...) locations in urban landscapes. These landscapes include former brownfield sites, superfund sites, and other abandoned spaces of contamination. Although environmental justice efforts to reclaim healthy food in urban community gardens are commendable, the presence and effects of potentially harmful contaminants is often overlooked as gardens are established. Further, governmental organizations tasked with protecting human health, such as the Environmental Protection Agency, have not established any health standards for urban community gardens. This creates many challenges in determining what is safe in community gardens, and garden mangers and users are often unaware of how severe the impacts of contamination may be or how to mitigate its effects. In this study, I highlight the prevalence of harmful concentrations of contaminants in urban community gardens in and near Seattle, Washington that are managed with organic practices. I then present the challenges and barriers to gardening in contaminated spaces. Finally, I make recommendations to address contamination in gardens spaces, and call for better regulatory standards and other forms of support to mitigate risk to users. (shrink)

Community-based participatory research (CBPR) focuses on specific community needs, and produces results that directly address those needs. Although conducting ethical CBPR is critical to its success, few academic programs include this training in their curricula. This article describes the development and evaluation of an online training course designed to increase the use of CBPR in mental health disciplines. Developed using a participatory approach involving a community of experts, this course challenges traditional research by introducing a collaborative process meant (...) to encourage increased participation by special populations and narrow the parity gap in effective mental health treatment and services delivery. (shrink)

Background: Over the last several decades, scientists and social groups have frequently raised concerns about politicization or political interference in regulatory science. Public actors (environmentalists and industry advocates, politically aligned public figures, scientists and political commentators, in the United States as well as in other countries) across major political-regulatory controversies have expressed concerns about the inappropriate politicization of science. Although we share concerns about the politicization of science, they are frequently framed in terms of an ideal of value-free science, according (...) to which political and economic values have no legitimate role to play in science. For several decades, work in philosophy of science has identified serious conceptual and practical problems with the value-free ideal. -/- Objectives: Our objectives are to discuss the literature regarding the conceptual and practical problems with the value-free ideal and offer a constructive alternative to the value-free ideal. -/- Discussion: We first discuss the prevalence of the value-free ideal in regulatory science, then argue that this ideal is self-undermining and has been exploited to delay protective regulation. To offer a constructive alternative, we analyze the relationship between the goals of regulatory science and the standards of good scientific activity. This analysis raises questions about the relationship between methodological and practical standards for good science, tensions among various important social goods, and tensions among various social interests. We argue that the aims of regulatory science help to legitimize value-laden choices regarding research methods and study designs. Finally, we discuss how public deliberation, adaptive management, and community-based participatory research can be used to improve the legitimacy of scientists as representatives of the general public on issues of environmental knowledge. -/- Conclusions: Reflecting on the aims of regulatory science—such as protecting human health and the environment, informing democratic deliberation, and promoting the capacities of environmental justice and Indigenous communities—can clarify when values have legitimate roles in regulatory science. (shrink)

I recently read through the most recent 24 issues of Environmental Health Perspectives—the National Institutes of Health journal of, among other issues, scientific research into how environmental contaminants impact animal and human health. It is a catalog of horrors from a public health perspective. Fish and frogs with their sex scrambled; deformed frogs with altered hormone levels in their blood; a nearly threefold increase in birth defects among Minnesota farm children exposed to pesticides; 2,4-D exposure reducing hormone levels (...) in men; insignificant levels of four environmental chemicals adding up to a significant dose; a third study reconfirming a 50% sperm decline in U.S. men, 1934–1996; phthalates elevated in the blood of Puerto Rican girls developing breasts before they are 8; some 6,000 chemicals declared candidates for study as hormone disrupters ; children living near incinerators having delayed sexual development; hypospadias linked to organochlorine levels in the blood of mink, otter, and polar bears; and “No living organism may be considered DDT-free.” Nothing definitive, but it all suggests that things are tending in a direction that is perfectly awful. (shrink)

The term ‘environment’ is not uniformly defined in the public health sciences, which causes crucial inconsistencies in research, health policy, and practice. As we shall indicate, this is somewhat entangled with diverging pathogenic and salutogenic perspectives (research and policy priorities) concerning environmental health. We emphasise two distinct concepts of environment in use by the World Health Organisation. One significant way these concepts differ concerns whether the social environment is included. Divergence on this matter has profound consequences for the understanding (...) of health and disease, for measures derived from that understanding targeting health promotion and disease prevention, and consequently, for epistemic structures and concept development in scientific practice. We hope to improve the given situation in public health by uncovering these differences and by developing a fruitful way of thinking about environment. Firstly, we side with the salutogenic conception of environment as a _health resource_ (as well as a source of health risks). Secondly, we subdivide the concept of environment into four _health-oriented environmental categories_ (viz., natural, built-material, socio-cultural, and psychosocial) and we link these with other theoretical notions proposed in the health sciences literature. Thirdly, we propose that in public health ‘environment’ should be understood as consisting of all extrinsic factors that influence or are influenced by the health, well-being, and development of an individual. Consequently, none of the four categories should be excluded from the concept of environment. We point out the practical relevance and fruitfulness of the conception of environment as a health source and frame this in causal terms, representing _individual health environments_ as causal networks. Throughout, we side with the view that for the design of human health-promoting settings, increased attention and consideration of environmental resources of salutogenic potential is particularly pressing. (shrink)

This article starts with a case outlining ethical challenges encountered in participatory action research (PAR) on vaccine hesitancy in rural India during Covid-19. Community researchers were recruited by a not-for-profit organisation, with the aim of both discovering the reasons for vaccine hesitancy and encouraging take-up. This raised issues about the roles and responsibilities of local researchers in their own communities, where they might be blamed for adverse reactions to vaccination. They and their mentor struggled with balancing societal protection against (...) individual rights to make choices. These themes are explored in two commentaries discussing the difficulties in balancing ethics in public health (prioritising societal benefits), social research (protecting participants from harm and respecting their rights not to be involved) and participatory research practices (maximising democratic participation and decision-making). As discussed in the first commentary, often these cohere, but tensions can arise. The second commentary also raises the issue of epistemic justice, questioning the extent to which the villagers could have a say in the design, implementation and interpretation of the research, and the dangers of not hearing the voices and arguments of people who reject vaccination. The case and commentaries highlight the complexities of PAR and additional challenges in a public health context. (shrink)

The introduction of the National Health and Medical Research Council guidelines for the ethical conduct of Indigenous health research: Values and Ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research (NHMRC, 2003), has prompted renewed debate about the ethical assessment of Indigenous health research in Australia. Concern has been expressed that these guidelines provide inadequate protection of Indigenous interests and that their introduction will result in a rolling back of important Indigenous research reform gains of the (...) past three decades. Another view is that the participatory focus of the Guidelines will help ensure that key Indigenous values are positioned as central to the development of research involving Indigenous interests. In this article we provide an overview of recent commentary on the Guidelines, and canvass practical proposals for their implementation into practice. In particular, we present a case for applying the Values and Ethics Guidelines as a foundation for establishing negotiated research agreements between Indigenous peoples and professional researchers at the local community level. The intention of this proposal is to give voice to the concerns and perspectives of Indigenous peoples through research, and to provide a framework for monitoring research after ethics approval has been granted. (shrink)

Microinsurance is the provision of insurance services to the poor, usually in developing countries. One of the key criteria of poverty is vulnerability even to minor events. In such cases, even micro coverage can make a major difference, yet still be funded by an affordable contribution by the insured. Like any kind of insurance, microinsurance can cover different risks to life, health, farming, property among other things. Our paper sketches how one could address and develop microinsurance business ethics. First, (...) we introduce microinsurance to the business ethics community and business ethics to the microinsurance community. Our draft of microinsurance ethics is then developed from two angles: as a holistic understanding of ideals and possible ethical conflicts in key stakeholder relationships and by distinguishing eight challenges when targeting the poor and when marketing microinsurance. As an open ending, the article suggests a three-stage action research design focusing on how microinsurance could (and should) internalize ethics, respecting rather than neglecting national- and local-cultural conditions. (shrink)

Mistrust and fear of research often exist in minority communities because of assumptions, preconceived ideas, and historical abuse and racism that continue to influence research participation. The research establishment is full of well-meaning ‘outsider’ investigators who recognize discrimination, health disparities, and insufficient health care providers in minority communities, but struggle in breaking through this history of mistrust. This article provides ethical insights from one such ‘insider-outsider’, community-based participatory research project implemented via community health advisors in the Mississippi Delta. Both (...) community-based participatory research and community health advisors provide opportunities to address the ethical issues of trust, non-maleficence, and justice in minority communities. Implications for ethics-driven nursing research are discussed. (shrink)

Sexuality education is fundamental in higher and tertiary education institutions (HTEIs). Evidence suggests that its effective education is through translations into the first language of learners. However, in global and multilingual cultural communities such as HTEIs, the foundations for these translations are still a researchable area. Notably, in HTEIs adolescents, young adults and adults co-exist and therefore, any translations must be toned to balance across these groups. The aim of this study was to establish strategies that could enable sexuality (...) educators to effectively transfer information that is steeped in indigenous language, religious and cultural meaning without precipitating stigma and taboo issues. The study setting was the National University of Science and Technology where a cross section of indigenous cultures, languages and religions co-existed with other global cultures. A University Community-based Participatory Research (CBPR) methodology was administered by the researchers using a Delphi research approach to students and staff. Multilingual, multilayered, multireligious, and multicultural nature of the setting presented serious challenges that compromised the prevention of stigma and taboo issues when dealing with sexuality education. We recommend that the strategy to present sexuality education in indigenous languages to the generality of HTEIs population should, in the first instance, involve systematic identification of appropriate interventions that are religious, cultural, and language-specific. Contribution: This research reveals paramount ethical and religious violations that have a potential to precipitate opportunistic sexual relationships that may lead to impediments in capacity building for learners. This research can be utilised by academics on the field of Practical Theology, specifically youth ministry and pastoral care. (shrink)

This paper presents the preliminary results from my research focused on beliefs and practices related to the life cycle and certain health-illness processes related to their different stages, in two Mbya communities in the province of Misiones, in the Argentinian northeast. We have centered our research on parasite illnesses and the groups' numerous beliefs and experiences around their origin, diagnosis, prevention and therapeutics.We used observations and interviews to characterize the diagnosis, treatment and prevention strategies performed by different individuals as well (...) as recognize and define risk situations related with parasite infestation and transmission in the context of their domestic activities.Our investigation showed that certain forms of child care, in particular those related to respecting food prescriptions and taboos are meant to protect children from possible risk situations. (shrink)

Recent research exposing environmental and social externalities of biofuels has undermined the earlier national consensus that they would provide climate mitigation and rural development benefits, but support for ethanol remains strong in Iowa. The objective of this paper is to understand how stakeholder groups in Iowa have framed the benefits and risks associated with ethanol’s impact on the local economy and environment. Our case study draws on in-depth, semi-structured interviews conducted with key informants from agricultural organizations, environmental organizations, (...) and government departments in the state. We find that in Iowa, widespread support for ethanol production exists among government, energy, and farm groups, and that they frame ethanol production as economically beneficial to rural communities and agriculture, while minimizing the possibility of associated environmental risks. Although participants from environmental organizations in Iowa express apprehension about the environmental impacts of expanded corn ethanol production, their unease is muted in relation to economic benefits and in relation to other environmental issues, and few have publicly voiced their concerns. To understand these findings, we draw from the environmental sociology literature that examines the role of powerful natural resource interests in framing the importance of resource extraction and commodity production to community identity and economy and in delegitimizing and naturalizing associated environmental issues and problems. We argue that powerful natural resource interests in Iowa both naturalize environmental problems related to ethanol production and engage in diversionary reframing to emphasize the economic benefits while minimizing or rejecting the potential environmental risks. (shrink)

BackgroundPromoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been intense debate within (...) academic bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide.MethodsWe reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services.ResultsAccess to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries.ConclusionAlthough in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context. (shrink)

My research explores Maya perspectives on neo-traditional farming as a source of metabolic health and resilience to the global epidemic of type-two diabetes. This article is based on long-term ethnographic research and interviews in Maya Mountains Reservation communities in southern Belize, an area with low diabetes prevalence relative to national and global populations. Research participants see lower rates of diabetes in the MMR as the result of neo-traditional peasant and subsistence farming on ancestral lands. Good metabolic health represents the embodiment (...) of food systems that routinize healthy material and social relationships to the landscape. This research suggests that diabetes is endemic to modern food systems and proposes neo-traditional food ways as a societal antidote to nutritional disease. My research demonstrates and responds to a need for further disaggregated data on diabetes prevalence in Indigenous communities, contributes to the social scientific literature on the importance of small-scale agricultural models for community health, and provides a case study of success in diabetes prevention. I engage Maya perspectives with anthropological literature on embodiment and small-scale agriculture to suggest neo-traditional food ways as healthier alternatives to capitalist agricultural development. (shrink)

FOSTER J, CHIANG F, HILLARD RC, HALL P and HEATH A. Nursing Inquiry 2010; 17: 309–316 Team process in community‐based participatory research on maternity care in the Dominican RepublicA cross‐cultural team consisting of US trained academic midwife researchers, Dominican nurses, and Dominican community leaders have partnered in this international nursing and midwifery community‐based participatory research (CBPR) project in the Dominican Republic to understand the community experience with publicly funded maternity services. The purpose of the study was to understand (...) community perceptions of maternity services. This article highlights the activities that the research team carried out during each phase of the research process, and how they established team identity, team trust, and team efficacy. This research has created a platform for new avenues for health providers and community to partner to improve maternal‐newborn care. Community‐based participatory research is one way forward to address the past and present inequities constitutive of global health disparities. (shrink)

Advances in genetic research have created the need to inform consumers. Yet, the communication of hereditary risk and of the options for how to deal with it is a difficult task. Due to the abstract nature of genetics, people tend to overestimate or underestimate their risk. This paper addresses the issue of how to communicate risk information on hereditary breast and ovarian cancer through an online application. The core of the paper illustrates the design of OPERA, a (...) risk assessment instrument that applies the UK National Institute of Health and Clinical Excellence's guidelines on the basis of (i) the number of relatives on the same side of the family with the same cancer or cancers that are known to run together; (ii) the ages of these relatives at diagnosis and (iii) the closeness of the family relationship with the person who is doing the assessment. By relying on the argumentation theory, we explain how the communication strategy that OPERA implements is essentially based on Perelman and Olbrechts-Tyteca's deductive argumentation by association. By using as premises “facts” (propositions about reality that can be assumed without further justification) and “truths” (propositions that make connections about facts), OPERA delivers its claims with an ex auctoritate causal link aimed at transferring the audience's acceptance of the cause to the effect. Overall, the design of OPERA rests on its capacity to induce users' active processing of risk information through an appeal to their reasoning faculty. In the conclusion, we present some results from a pilot evaluation of users' acceptance of OPERA. (shrink)

Clinical research ethics consultation has emerged in the last 15 years as a service to those involved in the conduct of clinical research who face challenging issues for which more than one course of action may be justified. To respond to a growing field and need for opportunities to share knowledge and experience, the Clinical Research Ethics Consultation Collaborative, established in 2014, holds monthly webinars for its 90 members to present their most challenging cases to each other and engage in (...) substantive discussion. Every year, the group selects the four most interesting cases with accompanying commentaries for publication in the American Journal of Bioethics. This timely book brings together these cases and commentaries under a range of common themes for the first time, creating a permanent collection in book format that encourages and supports readers to gain a better understanding of the ethical challenges that they may face, and providing them with a convenient and reflective resource to reference in their own deliberations. Key Features- Comprehensive collection of cases and commentaries, chosen to reflect the range of issues faced by clinical researchers and oversight committees and illustrate the diversity of analysis that can arise. Supplemented by short introductions to each section. Focus on ethical rather than regulatory issues. Essential Reading for graduate students in bioethics and post-doctoral bioethics fellows, and useful for all participants in training grants that are funded by either NIH or NSF Presenting challenging cases to stimulate reflection, the book provides invaluable guidance to clinicians in training and in practice and to investigators, bioethics consultants, regulators, and oversight bodies. (shrink)

Cheryl Cox MacPherson recently argued, in an article for this journal, that ‘Climate Change is a Bioethics Problem’. This article elaborates on that position, particularly highlighting bioethicists' potential ability to help reframe the current climate change discourse to give more attention to its health risks. This reframing process is especially important because of the looming problem of climate change skepticism. Recent empirical evidence from science framing experiments indicates that the public reacts especially positively to climate change messages framed in public (...) health terms, and bioethicists are particularly well positioned to contribute their expertise to the process of carefully developing and communicating such messages. Additionally, as climate framing research and practice continue, it will be important for bioethicists to contribute to the creation of that project's nascent ethical standards. The discourse surrounding antibiotic resistance is posited as an example that can lend insight into how communicating a public health-framed message, including the participation of bioethicists, can help to override public skepticism about the findings of politically contentious scientific fields. (shrink)

The question of how an individual firm's social and environmental performance impacts its firm risk has not been examined in any empirical UK research. Does a company that strives to attain good environmental performance decrease its market risk or is environmental performance just a disadvantageous cost that increases such risk levels for these firms? Answers to this question have important implications for the management of companies and the investment decisions of individuals and institutions. The (...) purpose of this paper is to examine the relationship between corporate environmental performance and firm risk in the British context. Using the largest dataset assembled so far, with community and environmental responsibility (CER) rankings for all rated UK companies between 1994 and 2006, we show that a company's environmental performance is inversely related to its systematic financial risk. However, an increase of 1.0 in the CER score is associated with only a 0.028 reduction in its β. (shrink)

YOUNG L, and WHARF HIGGINS J.Nursing Inquiry2010;17: 346–358 Using participatory research to challenge the status quo for women’s cardiovascular healthCardiovascular health research has been dominated by medical and patriarchal paradigms, minimizing a broader perspective of causes of disease. Socioeconomic status as a risk for cardiovascular disease is well established by research, yet these findings have had little influence. Participatory research (PR) that frames mixed method research has potential to bring contextualized clinically relevant findings into program planning and (...) policy‐making arenas toward developing meaningful health and social policies relevant to primary prevention. In this article we provide an overview of a PR program that included two quantitative and one qualitative studies and then we discuss lessons learned. The PR process we found was empowering for lone mothers, and transformative for lone mothers and researchers. Further, PR as an approach to research opened spaces in practice and policy‐making arenas to raise upstream issues relevant to the health of low income lone mothers. We conclude that while PR is an effective approach to social determinants research, as a time‐intensive endeavor, and one that does not easily align with research tradition, researchers must consider the strengths and drawbacks of PR when planning to implement such an approach. (shrink)

Background: The objective of this research was to review reporting of ethical concerns and community involvement in peer-reviewed systematic reviews or meta-analyses concerning American Indian, Alaska Native, or Native Hawaiian (AI/AN/NH) health. Methods: Text words and indexed vocabulary terms were used to query PubMed, Embase, Cochrane Library, and the Native Health Database for systematic reviews or meta-analyses concerning AI/AN/NH health published in peer-reviewed journals, followed by a search through reference lists. Each article was abstracted by two independent reviewers; results were (...) discussed until consensus was reached. Results: We identified 107 papers published from 1986 through 2012 that were primarily about AI/AN/NH health or presented findings separately for AI/AN/NH communities. Two reported seeking indigenous reviewer feedback; none reported seeking input from tribes and communities. Approximately 7% reported on institutional review board (IRB) approval of included studies, 5% reported on tribal approval, and 4% referenced the sovereignty of AI/AN tribes. Approximately 63% used evidence from more than one AI/AN/NH population study, and 28% discussed potential benefits to communities from the synthesis research. Conclusions: Reporting of ethics and community involvement are not prominent. Systematic reviews and meta-analyses making community-level inferences may pose risks to communities. Future systematic reviews and meta-analyses should consider ethical and participatory dimensions of research. (shrink)

United States federal regulations for pediatric research with no prospect of direct benefit restrict institutional review board (IRB) approval to procedures presenting: 1) no more than "minimal risk" (§ 45CFR46.404); or 2) no more than a "minor increase over minimal risk" if the research is commensurate with the subjects' previous or expected experiences and intended to gain vitally important information about the child's disorder or condition (§ 45CFR46.406) (DHHS 2001). During the 25 years since their adoption, these regulations (...) have helped IRBs balance subject protections with the pursuit of scientific knowledge to advance children's welfare. At the same time, inconsistency in IRB application of these regulations to pediatric protocols has been widespread, in part because of the ambiguity of the regulatory language. During the past decade, three federally-charged committees have addressed these ambiguities: 1) the National Human Research Protections Advisory Committee (NHRPAC) (Washington, DC), 2) the Institute of Medicine (IOM) Committee on the Ethical Conduct of Clinical Research Involving Children (Washington, DC); and 3) the United States Department of Health and Human Services Secretary's Advisory Committee for Human Research Protections (SACHRP) (Washington, DC). The committees have reached similar conclusions on interpretation of language within regulations § § 45CFR46.404 and 406; these conclusions are remarkably consistent with recent international recommendations and those of the original National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1977) report from which current regulations are based. Drawing on the committees' public reports, this article identifies the ethical issues posed by ambiguities in regulatory language, summarizes the committees' deliberations, and calls for a national consensus on recommended criteria. (shrink)

We conducted and analyzed qualitative interviews with 12 persons working on the Healthy Public Housing Initiative in Boston, Massachusetts in 2001. Our goal was to generate ideas and themes related to the ethics of the community-based participatory research in which they were engaged. Specifically, we wanted to see if we found themes that differed from conventional research that is based on an individualistic ethics. There were clearly distinct ethical issues raised with respect to projects and individuals who engage in (...) community-based collaborations. The differences that arose from the interviews were seeking equality between the partners, the need for the community partner to defend the community, dealing with unflattering data, meeting community expectations and producing tangible benefits to the community. (shrink)

The complexity of chromium chemistry makes it an ideal example of how the Principle of Expediency, first articulated by sanitary pioneer Earle Phelps, can be used in a standard setting. Expediency, defined by Phelps as “the attempt to reduce the numerical measure of probable harm, or the logical measure of existing hazard, to the lowest level that is practicable and feasible within the limitations of financial resources and engineering skill”, can take on negative connotations unless subject to ethical guidance. (...) In this paper we argue that without ethical principles as a rubric for negotiating environmental regulations, communities run the risk of slipping from the Principle of Expediency as defined by Phelps to the alternative usage of expediency meaning that which does not reflect ethical consideration or concern beyond self-serving interest. Three ethical ideals—justice, mercy and humility—are suggested as values to be considered while resolving regulatory issues related to environmental protection. The Principle of Expediency serves as a working principle, but not as a rigid algorithm, for setting regulatory limits for environmental concentrations of waste products like chromium. (shrink)