Ethical Issues in Research: Perceptions of Researchers, Research Ethics Board Members and Research Ethics Experts.

In the context of academic research, a diversity of ethical issues, conditioned by the different roles of members within these institutions, arise. Previous studies on this topic addressed mainly the perceptions of researchers. However, to our knowledge, no studies have explored the transversal ethical issues from a wider spectrum, including other members of academic institutions as the research ethics board (REB) members, and the research ethics experts. The present study used a descriptive phenomenological approach to document the ethical issues experienced by a heterogeneous group of Canadian researchers, REB members, and research ethics experts. Data collection involved socio-demographic questionnaires and individual semi-structured interviews. Following the triangulation of different perspectives (researchers, REB members and ethics experts), emerging ethical issues were synthesized in ten units of meaning: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. This study highlighted several problematic elements that can support the identification of future solutions to resolve transversal ethical issues in research that affect the heterogeneous members of the academic community.

Misconduct and Misbehavior Related to Authorship Disagreements in Collaborative Science.

Scientific authorship serves to identify and acknowledge individuals who "contribute significantly" to published research. However, specific authorship norms and practices often differ within and across disciplines, labs, and cultures. As a consequence, authorship disagreements are commonplace in team research. This study aims to better understand the prevalence of authorship disagreements, those factors that may lead to disagreements, as well as the extent and nature of resulting misbehavior. Methods include an international online survey of researchers who had published from 2011 to 2015 (8364 respondents). Of the 6673 who completed the main questions pertaining to authorship disagreement and misbehavior, nearly half (46.6%) reported disagreements regarding authorship naming; and discipline, rank, and gender had significant effects on disagreement rates. Paradoxically, researchers in multidisciplinary teams that typically reflect a range of norms and values, were less likely to have faced disagreements regarding authorship. Respondents reported having witnessed a wide range of misbehavior including: instances of hostility (24.6%), undermining of a colleague's work during meetings/talks (16.4%), cutting corners on research (8.3%), sabotaging a colleague's research (6.4%), or producing fraudulent work to be more competitive (3.3%). These findings suggest that authorship disputes may contribute to an unhealthy competitive dynamic that can undermine researchers' wellbeing, team cohesion, and scientific integrity.

Researchers' Perceptions of Ethical Authorship Distribution in Collaborative Research Teams.

Authorship is commonly used as the basis for the measurement of research productivity. It influences career progression and rewards, making it a valued commodity in a competitive scientific environment. To better understand authorship practices amongst collaborative teams, this study surveyed authors on collaborative journal articles published between 2011 and 2015. Of the 8364 respondents, 1408 responded to the final open-ended question, which solicited additional comments or remarks regarding the fair distribution of authorship in research teams. This paper presents the analysis of these comments, categorized into four main themes: (1) disagreements, (2) questionable behavior, (3) external influences regarding authorship, and (4) values promoted by researchers. Results suggest that some respondents find ways to effectively manage disagreements in a collegial fashion. Conversely, others explain how distribution of authorship can become a "blood sport" or a "horror story" which can negatively affect researchers' wellbeing, scientific productivity and integrity. Researchers fear authorship discussions and often try to avoid openly discussing the situation which can strain team interactions. Unethical conduct is more likely to result from deceit, favoritism, and questionable mentorship and may become more egregious when there is constant bullying and discrimination. Although values of collegiality, transparency and fairness were promoted by researchers, rank and need for success often overpowered ethical decision-making. This research provides new insight into contextual specificities related to fair authorship distribution that can be instrumental in developing applicable training tools to identify, prevent, and mitigate authorship disagreement.

Big Data in Drug Discovery.

Interpretation of Big Data in the drug discovery community should enhance project timelines and reduce clinical attrition through improved early decision making. The issues we encounter start with the sheer volume of data and how we first ingest it before building an infrastructure to house it to make use of the data in an efficient and productive way. There are many problems associated with the data itself including general reproducibility, but often, it is the context surrounding an experiment that is critical to success. Help, in the form of artificial intelligence (AI), is required to understand and translate the context. On the back of natural language processing pipelines, AI is also used to prospectively generate new hypotheses by linking data together. We explain Big Data from the context of biology, chemistry and clinical trials, showcasing some of the impressive public domain sources and initiatives now available for interrogation.

Supporting ethics educators in Canadian occupational therapy and physical therapy programs: A national interprofessional knowledge exchange project.

Ethics education is the cornerstone of professional practice, fostering knowledge and respect for core ethical values among healthcare professionals. Ethics is also a subject well-suited for interprofessional education and collaboration. However, there are few initiatives to gather experiences and share resources among ethics educators in rehabilitation. We thus undertook a knowledge exchange project to: 1) share knowledge about ethics training across Canadian occupational and physical therapy programs, and 2) build a community of educators dedicated to improving ethics education. The objectives of this paper are to describe this interprofessional knowledge exchange project involving ethics educators (with a diversity of professional and disciplinary backgrounds) from Canadian occupational and physical therapy programs as well as analyze its outcomes based on participants' experiences/perceptions. Two knowledge exchange strategies were employed: an interactive one-day workshop and a wiki platform. An immediate post-workshop questionnaire evaluated the degree to which participants' expectations were met. Structured telephone interviews 9-10 months after the workshop collected participants' perceptions on whether (and if so, how) the project influenced their teaching or led to further interprofessional collaborations. Open-ended questions from the post-workshop questionnaires and individual interviews were analyzed using qualitative methods. Of 40 ethics educators contacted, 23 participated in the workshop and 17 in the follow-up interview. Only 6 participants logged into the wiki from its launch to the end of data collection. Five themes emerged from the qualitative analysis: 1) belonging and networking; 2) sharing and collaborating; 3) changing (or not) ways of teaching ethics; 4) sustaining the network; and 5) envisioning the future of ethics education. The project attained many of its goals, despite encountering some challenges. While the wiki platform proved to be of limited benefit in advancing the project goals, the interactive format and collaborative nature of the one-day workshop were described as rewarding and effective in bringing together occupational therapy and physical therapy educators to meet, network, and share knowledge.

[Development of a French-language online health policy course: an international collaboration]. / Développement d'un cours francophone en ligne sur les politiques publiques en santé : une collaboration internationale.

OBJECTIVE: To present the process and challenges of developing an online competency-based course on public health policy using a collaborative international approach. METHODS: Five public health experts, supported by an expert in educational technology, adopted a rigorous approach to the development of the course: a needs analysis, identification of objectives and competencies, development of a pedagogical scenario for each module and target, choice of teaching methods and learning activities, material to be identified or developed, and the responsibilities and tasks involved. RESULTS: The 2-credit (90-hour) graduate course consists of six modules including an integration module. The modules start with a variety of case studies: tobacco law (neutral packaging), supervised injection sites, housing, integrated services for the frail elderly, a prevention programme for mothers from disadvantaged backgrounds, and the obligatory use of bicycle helmets. In modules 1, 3, 4 and 5, students learn about different stages of the public policy development process: emergence, formulation and adoption, implementation and evaluation. Module 2 focuses on the importance of values and ideologies in public policy. The integration module allows the students to apply the knowledge learned and addresses the role of experts in public policy and ethical considerations. CONCLUSION: The course has been integrated into the graduate programmes of the participating universities and allows students to follow, at a distance, an innovative training programme.

Should we perform kidney transplants on foreign nationals?

In Canada, there are currently no guidelines at either the federal or provincial level regarding the provision of kidney transplantation services to foreign nationals (FN). Renal transplant centres have, in the past, agreed to put refugee claimants and other FNs on the renal transplant waiting list, in part, because these patients (refugee claimants) had health insurance through the Interim Federal Health Programme to cover the costs of medication and hospital care. However, severe cuts recently made to this programme have forced clinicians to question whether they should continue with transplants for FNs, for financial and ethical reasons. This paper first examines different national policies (eg, in Canada, USA, France and the UK) to map the diversity of approaches regarding transplantation for FNs, and then works through different considerations commonly used to support or oppose the provision of organs to these patients: (1) the organ shortage; (2) the free-rider problem; (3) the risk of becoming a transplant destination; (4) the impact on organ donation rates; (5) physicians' duties; (6) economic concerns; (7) vulnerability. Using a Canadian case as a focus, and generalising through a review of various national policies, we analyse the arguments for and against transplantation for FNs with a view to bringing clarity to what is a sensitive political and clinical management issue. Our aim is to help transplant centres, clinicians and ethicists reflect on the merits of possible options, and the rationales behind them.

Epigenetics and the environment in bioethics.

A rich literature in public health has demonstrated that health is strongly influenced by a host of environmental factors that can vary according to social, economic, geographic, cultural or physical contexts. Bioethicists should, we argue, recognize this and--where appropriate--work to integrate environmental concerns into their field of study and their ethical deliberations. In this article, we present an argument grounded in scientific research at the molecular level that will be familiar to--and so hopefully more persuasive for--the biomedically-inclined in the bioethics community. Specifically, we argue that the relatively new field of molecular epigenetics provides novel information that should serve as additional justification for expanding the scope of bioethics to include environmental and public health concerns. We begin by presenting two distinct visions of bioethics: the individualistic and rights-oriented and the communitarian and responsibility-oriented. We follow with a description of biochemical characteristics distinguishing epigenetics from genetics, in order to emphasize the very close relationship that exists between the environment and gene expression. This then leads to a discussion of the importance of the environment in determining individual and population health, which, we argue, should shift bioethics towards a Potterian view that promotes a communitarian-based sense of responsibility for the environment, in order to fully account for justice considerations and improve public health.

Health care professionals and bedbugs: an ethical analysis of a resurgent scourge.

Many health care professionals (HCPs) are understandably reluctant to treat patients in environments infested with bedbugs, in part due to the risk of themselves becoming bedbug vectors to their own homes and workplaces. However, bedbugs are increasingly widespread in care settings, such as nursing homes, as well as in private homes visited by HCPs, leading to increased questions of how health care organizations and their staff ought to respond. This situation is associated with a range of ethical considerations including the duty of care, stigmatization, vulnerability, confidentiality, risks for third parties, and professional autonomy. In this article, we analyze these issues using a case study approach. We consider how patients whose living environments are infested with bedbugs can receive care in the community setting in a manner that supports their well-being, is consistent with fairness in care provision, and takes into account risks for HCPs and third parties. We also discuss limits and obstacles to the provision of care in these situations.

The expert and the lay public: reflections on influenza A (H1N1) and the risk society.

Trust between the lay public and scientific experts is a key element to ensuring the efficient implementation of emergency public health measures. In modern risk societies, the management and elimination of risk have become preeminent drivers of public policy. In this context, the protection of public trust is a complex task. Those actors involved in public health decision-making and implementation (e.g., mass vaccination for influenza A virus) are confronted with growing pressures and responsibility to act. However, they also need to accept the limits of their own expertise and recognize the ability of lay publics to understand and be responsible for public health. Such a shared responsibility for risk management, if grounded in participative public debates, can arguably strengthen public trust in public health authorities and interventions.

Accessibility and transparency of editor conflicts of interest policy instruments in medical journals.

BACKGROUND: There has been significant discussion about the need to manage conflict of interest (COI) in medical journals. This has lead many journals to implement policies to manage COI for authors and reviewers; however, surprisingly little attention has been focused on the COI of journal editors. OBJECTIVE: The goal of this exploratory study was to determine whether the policies were accessible to the public and to researchers, and to discuss the potential impact on public transparency. DESIGN: The authors conducted an internet search of editor COI policy instruments that have been developed, implemented and communicated by the top 10 peer-reviewed medical journals (2010 ISI Web of Knowledge Impact Factor), and assessed their general accessibility by gauging the level of difficulty in navigating the journal's website (number of clicks to find the policy instruments). RESULTS: Only four of the 10 medical journals (40%) in this study have accessible COI policy directives that include editors (JIM, PLoS Medicine, AIM, CMAJ). One journal (NEJM) had an editorial on the subject, and another (The Lancet) mentioned editor COI in their general guidelines. These documents are not readily accessible; starting from the journal's main website at least four clicks are needed to access these documents. CONCLUSION: These results suggest that there is a general lack of accessible editor COI policy instruments among leading medical journals, something that may consequently have a negative impact on the trust accorded to these journals.

Authorship and responsibility in health sciences research: a review of procedures for fairly allocating authorship in multi-author studies.

While there has been significant discussion in the health sciences and ethics literatures about problems associated with publication practices (e.g., ghost- and gift-authorship, conflicts of interest), there has been relatively little practical guidance developed to help researchers determine how they should fairly allocate credit for multi-authored publications. Fair allocation of credit requires that participating authors be acknowledged for their contribution and responsibilities, but it is not obvious what contributions should warrant authorship, nor who should be responsible for the quality and content of the scientific research findings presented in a publication. In this paper, we review arguments presented in the ethics and health science literatures, and the policies or guidelines proposed by learned societies and journals, in order to explore the link between author contribution and responsibility in multi-author multidisciplinary health science publications. We then critically examine the various procedures used in the field to help researchers fairly allocate authorship.

Colombian adolescents' preferences for independently accessing sexual and reproductive health services: A cross-sectional and bioethics analysis.

OBJECTIVE: Our study sought to (1) describe the practices and preferences of Colombian adolescents in accessing sexual and reproductive health services: accompanied versus alone; (2) compare actual practices with stated preferences; and (3) determine age and gender differences regarding the practice and these stated preferences. METHODS: 812 participants aged 11-24 years old answered a survey in two Profamilia clinics in the cities of Medellin and Cali in Colombia. A cross-sectional analysis was performed to compare participants' answers based on the variables of gender and age. RESULTS: A quarter of participants visited the clinic alone (25.4%). Females were more likely to go alone in comparison to males (26.3% vs 14.1%; p = 0.031), and older participants went alone more often than younger participants (p < 0.001). Most participants - 72.7% (95 %CI: 69.3-75.9) - expressed a preference in being accompanied to the clinic, and more than 90% had their preferences met. The preferences of older participants were, however, less likely to be met than those of younger participants (p < 0.001), notably, because they predominantly wanted to be accompanied. CONCLUSION: Contemporary public health and bioethics literature advocates in favor of developing health services that better meet the preferences of adolescents. The present research highlights an apparent blind spot related to the role that others (e.g., parents, friends, partners) can or should play in accompanying adolescent patients when they access sexual and reproductive health services. Respecting adolescents' preferences, and hence their autonomy, is not simply a matter of ensuring freedom from constraints (e.g., their right and ability to go alone). Rather, it should also consider the liberty to choose whether to be accompanied when accessing SHRS and by whom.

Bio-Ethics and One Health: A Case Study Approach to Building Reflexive Governance.

Surveillance programs supporting the management of One Health issues such as antibiotic resistance are complex systems in themselves. Designing ethical surveillance systems is thus a complex task (retroactive and iterative), yet one that is also complicated to implement and evaluate (e.g., sharing, collaboration, and governance). The governance of health surveillance requires attention to ethical concerns about data and knowledge (e.g., performance, trust, accountability, and transparency) and empowerment ethics, also referred to as a form of responsible self-governance. Ethics in reflexive governance operates as a systematic critical-thinking procedure that aims to define its value: What are the "right" criteria to justify how to govern "good" actions for a "better" future? The objective is to lay the foundations for a methodological framework in empirical bioethics, the rudiments of which have been applied to a case study to building reflexive governance in One Health. This ongoing critical thinking process involves "mapping, framing, and shaping" the dynamics of interests and perspectives that could jeopardize a "better" future. This paper proposes to hybridize methods to combine insights from collective deliberation and expert evaluation through a reflexive governance functioning as a community-based action-ethics methodology. The intention is to empower individuals and associations in a dialogue with society, which operation is carried out using a case study approach on data sharing systems. We based our reasoning on a feasibility study conducted in Québec, Canada (2018-2021), envisioning an antibiotic use surveillance program in animal health for 2023. Using the adaptive cycle and governance techniques and perspectives, we synthesize an alternative governance model rooted in the value of empowerment. The framework, depicted as a new "research and design (R&D)" practice, is linking operation and innovation by bridging the gap between Reflexive, Evaluative, and Deliberative reasonings and by intellectualizing the management of democratizing critical thinking locally (collective ethics) by recognizing its context (social ethics). Drawing on the literature in One Health and sustainable development studies, this article describes how a communitarian and pragmatic approach can broaden the vision of feasibility studies to ease collaboration through public-private-academic partnerships. The result is a process that "reassembles" the One Health paradigm under the perspective of global bioethics to create bridges between the person and the ecosystem through pragmatic ethics.

Pharmacogenomic technologies: a necessary "luxury" for better global public health?

BACKGROUND: Pharmacogenomic technologies aim to redirect drug development to increase safety and efficacy of individual care. There is much hope that their implementation in the drug development process will help respond to population health needs, particularly in developing countries. However, there is also fear that novel pharmacogenomic drugs will remain too costly, be designed for the needs of the wealthy nations, and so constitute an unnecessary "luxury" for most populations. In this paper, we analyse the promise that pharmacogenomic technologies hold for improving global public health and identify strategies and challenges associated with their implementation. DISCUSSION: This paper evaluates the capacity of pharmacogenomic technologies to meet six criteria described by the University of Toronto Joint Centre for Bioethics group: 1) impact of the technology, 2) technology appropriateness, 3) capacity to address local burdens, 4) feasibility to be implemented in reasonable time, 5) capacity to reduce the knowledge gap, and 6) capacity for indirect benefits. We argue that the implementation of pharmacogenomic technologies in the drug development process can positively impact population health. However, this positive impact depends on how and for which purposes the technologies are used. We discuss the potential of these technologies to stimulate drug discovery in the case of rare (orphan diseases) or neglected diseases, but also to reduce acute adverse drug reactions in infectious disease treatment and prevention, which promises to improve global public health. CONCLUSIONS: The implementation of pharmacogenomic technologies may lead to the development of drugs that appear to be a "luxury" for populations in need of numerous interventions that are known to have a demonstrable impact on population health (e.g., secure access to potable water, reduction of social inequities, health education). However, our analysis shows that pharmacogenomic technologies do have the potential to redirect drug development and distribution so as to improve the health of vulnerable populations. Strategies should thus be developed to better direct their implementation towards meeting the needs and responding to the realities of populations of the developing world (i.e., social, cultural and political acceptability, and local health burdens), making pharmacogenomic technologies a necessary "luxury" for global public health.

Making Decisions about Service Provision for Clients with Low Back Pain: Perspectives of Canadian Physiotherapy Professionals.

Purpose: This study identified the individuals responsible for making decisions about physiotherapy (PT) wait time, frequency of treatment, and treatment duration for persons with low back pain and determined which factors guided these decisions. Method: A cross-sectional survey was sent to Canadian PT professionals treating adult patients with musculoskeletal problems. It included a clinical vignette describing a patient with low back pain. Respondents were asked who made decisions about wait time, treatment frequency, and treatment duration as well as on which factors they based these decisions. Results: Clinicians were most often responsible for making decisions about treatment frequency and duration. Although clinicians and managers or coordinators were mainly responsible for making decisions about wait time, there was more variability depending on sector of care: in the private sector, administrative assistants played a much larger role. Clinical judgment, clinical guidelines, and patients' demands were the predominant factors influencing wait time and frequency decisions. Treatment duration was related to patients' goals, clinical progression, patients' motivation, and patients' return to work. Conclusions: Decisions about service provision for wait times are made by a range of stakeholders, and a wide variety of factors guide Canadian PT professionals' decision making. Identifying these factors is essential for informing a discussion of decisions about evidence-based and equitable service delivery so that the actors involved can reach a consensus.

Objectif : établir quelles sont les personnes responsables de prendre des décisions au sujet des temps d'attente et de la fréquence et de la durée des traitements en physiothérapie pour les personnes souffrant de douleurs lombaires, et déterminer quels facteurs orientent ces décisions. Méthodologie : les professionnels canadiens en physiothérapie qui traitaient des patients adultes atteints de problèmes musculosquelettiques ont reçu un sondage transversal, qui comprenait une mise en situation clinique décrivant un patient souffrant de douleurs lombaires. Les répondants devaient indiquer qui prenait les décisions au sujet des temps d'attente et de la durée et de la fréquence des traitements et sur quels facteurs reposaient ces décisions. Résultats : la plupart du temps, les cliniciens étaient responsables de prendre les décisions relatives à la fréquence et la durée des traitements. Même si la prise de décision sur les temps d'attente incombait surtout aux cliniciens et aux gestionnaires ou aux coordonnateurs, les responsabilités étaient plus variables en fonction du secteur de soins. En effet, dans le secteur privé, les adjoints administratifs jouaient un rôle beaucoup plus important à cet égard. Le jugement clinique, les directives cliniques et les demandes des patients étaient les principaux facteurs qui influaient sur les décisions en matière de temps d'attente et de fréquence. La durée des traitements dépendait des objectifs des patients, de leur progression clinique, de leur motivation et de leur retour au travail. Conclusions : de nombreux intervenants prennent les décisions sur le temps d'attente avant l'obtention des services, et toute une série de facteurs oriente les décisions des professionnels canadiens en physiothérapie. Il est essentiel de connaître ces facteurs pour éclairer les échanges sur les décisions relatives à une prestation de services équitable et fondée sur des données probantes, afin que toutes les personnes visées parviennent à un consensus.