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. (shrink)

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. (shrink)

This study’s objective was to understand Colombian adolescents’ experiences and preferences regarding access to sexual and reproductive health services (SRHS), either alone or accompanied. A mixed-method approach was used, involving a survey of 812 participants aged eleven to twenty-four years old and forty-five semi-structured interviews with participants aged fourteen to twenty-three. Previous research shows that adolescents prefer privacy when accessing SRHS and often do not want their parents involved. Such findings align with the longstanding tendency to frame the ethical principle (...) of autonomy as based on independence in decision-making. However, the present study shows that such a conceptualization and application of autonomy does not adequately explain Colombian adolescent participants’ preferences regarding access to SRHS. Participants shared a variety of preferences to access SRHS, with the majority of participants attaching great importance to having their parents involved, to varying degrees. What emerges is a more complex and non-homogenous conceptualization of autonomy that is not inherently grounded in independence from parental involvement in access to care. We thus argue that when developing policies involving adolescents, policymakers and health professionals should adopt a nuanced “relational autonomy” approach to better respect the myriad of preferences that Colombian (and other) adolescents may have regarding their access to SRHS. (shrink)

Van Rensselaer Potter (1911-2001), le biologiste à l’origine du terme « bioéthique » dans les écrits nord-américains, considère que « real bioethics falls in the context of the ideals of […] Aldo Leopold », un forestier, philosophe et poète ayant marqué le XXe siècle. Associer Leopold à Potter a pour effet de placer la bioéthique dans la famille des éthiques de l’environnement, ce qui la différencie du sens conventionnel retenu en médecine et en recherche depuis le Rapport Belmont (1979), une (...) déclaration ayant propulsé l’institutionnalisation de la bioéthique en Amérique du Nord. Cependant, diviser la bioéthique entre le médical et l’environnemental est réducteur. Potter propose au contraire une bioéthique globale s’intéressant aux enjeux situés à leur interface, dont ceux concernant la terre, la vie sauvage, la surpopulation, la consommation, etc. Cet article vise à amorcer un nouveau chantier d’analyse de la pensée de Potter en s’appuyant sur l’héritage de Leopold en biologie. Une synthèse de cette vision potterienne est proposée de manière à considérer son œuvre comme un tout cohérent s’intégrant aux grands débats qui transcendent les XXe et XXIe siècles. Sa vision apparaît comme une sagesse collective et prospective sous la forme d’une science de la survie et d’un code de bioéthique. Dépassant l’éthique de l’environnement, son association avec Leopold offre un modèle de la complexité s’imposant comme cas indissociable du contexte qui l’englobe, en améliorant nos façons d’intervenir en pratique dans un monde en constante transformation, à titre de gouvernance adaptative et de sagesse de la responsabilité. (shrink)

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. Of the 6673 who completed the main questions pertaining to authorship disagreement and misbehavior, nearly half 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, undermining of a colleague’s work during meetings/talks, cutting corners on research, sabotaging a colleague’s research, or producing fraudulent work to be more competitive. These findings suggest that authorship disputes may contribute to an unhealthy competitive dynamic that can undermine researchers’ wellbeing, team cohesion, and scientific integrity. (shrink)

This article concerns the ways in which authors from various fields conceptualise the ethical issues arising in the conduct of research. We reviewed critically and systematically the literature concerning the ethics of conducting research in order to engage in a reflection about the vocabulary and conceptual categories used in the publications reviewed. To understand better how the ethical issues involved in conducting research are conceptualised in the publications reviewed, we 1) established an inventory of the conceptualisations reviewed, and 2) we (...) critically assessed them. We found that the publications reviewed mostly showed examples of descriptive ethics, in that most authors describe ethical issues without reflecting much on them, which could be explained both by 1) a lack of ethical education in research contexts, and 2) by the fact that we do not know what researchers know (or do not) about ethical issues. Additionally, the definitions identified in the publications are scarce and at times imprecise, but this seems more to point out the ethical vocabulary’s difficulties in certain contexts. Further, very few authors offer proper conceptualisations of the ethical issues arising in conducting research. When dealing with vast arrays of ethical issues to conceptualise, perhaps one ought to remember that some typologies already exist that could guide further reflection and help understand other realities for which the current ethical vocabulary may be lacking. We believe that combining the reviewed typologies, both with other well-developed typologies and critical reflection, could help support better ethical practice in conducting research. (shrink)

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. (shrink)

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. (shrink)

For Van Rensselaer Potter (1911–2001), Global Bio-Ethics is about building on the legacy of Aldo Leopold (1887–1948), one of the most notable forest managers of the twentieth century who brought to light the importance of pragmatism in the sciences and showed us a new way to proceed with environmental ethics. Following Richard Huxtable and Jonathan Ives's methodological 'Framework for Empirical Bioethics Research Projects' called 'Mapping, framing, shaping,' published in BMC Medicine Ethics (2019)), we propose operationalizing a framework for Global Bio-Ethics (...) by hybridizing approaches in empirical bioethics and ecosystem management. We explain this framework using the metaphor of forest management. This mixed approach is articulated through three phases: (1) mapping the “landscape” to build a working theory, (2) framing the “scene” to prepare the fieldwork, and (3) shaping bioethics “tools” to stimulate cooperation. Applying this methodology, an adaptive management cycle is outlined to help ensure that political processes are sustainable and socially acceptable, still based on strategic and ethical thinking, but also capable of reshaping failing policies. (shrink)

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. (shrink)

Background There has been debate on whether a global or unified field of bioethics exists. If bioethics is a unified global field, or at the very least a closely shared way of thinking, then we should expect bioethicists to behave the same way in their academic activities anywhere in the world. This paper investigates whether there is a 'global bioethics' in the sense of a unified academic community. Methods To address this question, we study the web-linking patterns of bioethics institutions, (...) the citation patterns of bioethics papers and the buying patterns of bioethics books. Results All three analyses indicate that there are geographical and institutional differences in the academic behavior of bioethicists and bioethics institutions. Conclusion These exploratory studies support the position that there is no unified global field of bioethics. This is a problem if the only reason is parochialism. But these regional differences are probably of less concern if one notices that bioethics comes in many not always mutually understandable dialects. (shrink)

In seeking to clarify the concept of conflict of interest (COI) in debates about physician–industry relationships, Howard Brody (2011) highlights the extent to which the prob- lem turns on a common pejorative understanding of COI. Whether it is the academic or public policy “pharmapologists” or “pharmascolds” talking about COI, there is often a straightforward and overly simplistic correlation made: that is, a conflict of interest—by definition—leads to fraudulent or corrupt behavior. The same type of reasoning is com- monly found in (...) discussions about COI outside the health sciences, most notably in news stories about the awarding of government contracts or the behaviour of corporate executives. The problem is that in focusing on dramatic failures to manage COI (e.g., around Vioxx), there is a tendency to strongly associate COI with extreme forms of financial and even criminal misconduct, leaving the public, policymakers, academics, and professionals with a skewed and limited understanding of the concept. (shrink)

The ethics of safe sex in the gay community has, for many years, been focused on debates surrounding the responsibility regarding the use of condoms to prevent HIV transmission, once the only tool available. With the development of Truvada as a pre-exposure prophylaxis for HIV, for the first time in the history of the HIV/AIDS epidemic there is the potential to significantly reduce the risk of HIV transmission during sex without the use of condoms. The introduction of PrEP necessitates a (...) renewed discussion about the politics and ethics of safe sex for men who have sex with men. We present the arguments of authors who hold radically opposite positions with regard to the ethics of condom use by gay men, but who currently both criticize the use of PrEP. We offer a critique of their arguments and advance the position that the use of PrEP, even without condoms, can be acceptable and part of a safe sex ethics framework for MSM. (shrink)

In the United Kingdom (and elsewhere), there are moves to extend formal ethical review of research involving human subjects beyond the traditional oversight by NHS local or multi-centre research ethics committees of medical or clinical research, to also encompass all ‘non-clinical’ research involving human subjects. This paper describes and analyses the development and implementation of a model for ethical review within the university sector. At Cardiff University, a devolved or two-tiered system of ethics review has been created in which a (...) top-level university research ethics committee provides policy advice to and oversight of school-based research ethics committees that engage in formal ethics review of research conducted in their respective schools. We describe the system and reflect on the challenges and benefits of implementing such a coordinated and comprehensive university-wide system of ethics review. (shrink)

Lee (2017) calls for greater attention to the shared epistemological and normative grounds of both public health ethics and environmental ethics, and to Potter’s original conception of bioethics, which, as she rightly observes, has been largely disregarded in contemporary North American bioethics scholarship and practice. In a previous publication we also argued in favor of reviving the Potterian approach to bioethics; we built a case grounded in “the relatively new field of molecular epigenetics [that] provides novel information that should serve (...) as additional justification for expanding the scope of bioethics to include environmental and public health concerns.”. (shrink)

Genetic testing in the workplace is a technology both full of promise and fraught with ethical peril. Though not yet common, it is likely to become increasingly so. We survey the key arguments in favour of such testing, along with the most significant ethical worries. We further propose a set of pragmatic criteria, which, if met, would make it permissible for employers to offer (but not to require) workplace genetic testing.

Since the 1970s, there has been rapid and wide ranging development in the field of new reproductive technologies (NRT). With donor insemination (DI) and in vitro fertilization (IVF), previously infertile couples have been given new hope and the chance to have children. A more recent addition to these new methods of reproduction has been the combination of DI and IVF with surrogate mother arrangements.[1] This technique has subtly changed the realm of reproduction, for with the addition of a third party (...) (the surrogate) to the reproductive environment, the nature of motherhood, fatherhood, and the allocation of parental rights and duties has come into question.... In other words, has commercial surrogacy changed the traditional Western understanding of motherhood and does it do an injustice to the surrogate, the contracting mother, and/or women in general? I will argue that the fragmentation of the legal concept of ‘mother’ has created a range of social and ethical problems that need to be addressed; nevertheless, the basic societal definition of ‘motherhood’ remains substantially unchanged. (shrink)

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. (shrink)

There are conceptual and ethical challenges to defining adolescents’ autonomy to access health care, and these can lead to health care norms and practices that could be maladjusted to the needs and preferences of adolescents. Particularly sensitive is access to sexual and reproductive health care services (SRHS). Yet, while there has been substantial conceptual work to conceptualize autonomy (e.g., as independence), there is a lack of empirical research that documents the perceptions of adolescents regarding on how they access or wish (...) to access health care services. The main objectives of this research were to (a) understand how adolescents in Colombia interpret the concept of “autonomy,” (b) describe how these adolescents articulate their autonomy (i.e., preferences) in accessing SRHS, and (c) analyze the ethical issues emerging from these data. Forty-five semi-structured interviews were conducted with participants aged 14 to 23 years old in the Departments of Antioquia and Valle del Cauca in Colombia. Our study showed that participants’ understanding of autonomy was context-based and highly dependent on personal experiences, and these influenced their choice in how to access SRHS. Seen through the ethical lens of a reproductive justice framework, our results highlight the unequal opportunities for adolescents in terms of autonomy to access SRHS. (shrink)

Research on research ethics—regarding both the governance and practice of the ethical review of human subjects research—has a tumultuous history in North America and Europe. Much of the academic literature focuses on issues to do with regulating the conduct and quality of ethics review of research protocols by ethics committees (research ethics boards (REBs) in Canada and institutional review boards (IRBs) in the United States). In addition, some of the literature attends to issues particular to the review of qualitative research, (...) and still other literature addresses the challenges posed by and the need for research on REBs/IRBs. It is this third group of literature within which our article is situated. (shrink)

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. (shrink)

: Decisions about funding health services are crucial to controlling costs in health care insurance plans, yet they encounter serious challenges from intellectual property protection—e.g., patents—of health care services. Using Myriad Genetics' commercial genetic susceptibility test for hereditary breast cancer (BRCA testing) in the context of the Canadian health insurance system as a case study, this paper applies concepts from social contract theory to help develop more just and rational approaches to health care decision making. Specifically, Daniels's and Sabin's "accountability (...) for reasonableness" is compared to broader notions of public consultation, demonstrating that expert assessments in specific decisions must be transparent and accountable and supplemented by public consultation. (shrink)

Over the last decade there has been a noticeable increase in attention, on the part of public health scholars and professionals, to the important ethical challenges that arise in the context of public health policy, practice and research. This has arguably been a driver for the development of public health ethics as both a specialized field of study in bioethics and a subject for professional education. But how is PHE taught in public health programs and schools? Are current educational approaches (...) sufficient to provide future professionals with the necessary tools to address the diverse ethical challenges they will encounter? In this article, we examine the international public health and bioethics literatures regarding PHE education in public health programs and schools. Specifically, we 1) summarize the results from studies that describe PHE education in the United States, Europe, Canada and in some developing countries, 2) explore current attitudes and educational approaches toward ethics curricula in public health, and 3) identify and discuss reported barriers to PHE education. We conclude with some general recommendations and a research agenda to guide future work on implementing PHE into different public health programs. (shrink)

This scoping review addresses the issues of responsible conduct of research (RCR) that can arise in the practice of research-creation (RC), an emergent, interdisciplinary, and heterogeneous field at the interface of academic research and creative activities. Little is yet known about the nature and scope of RCR issues in RC, so our study examined three questions: (1) What are the specific issues in RC in relation to RCR? (2) How does the specificity of RC influence the understanding and practice of (...) RCR? (3) What recommendations could help address the issues highlighted in the literature To answer these questions, we conducted a scoping review of the academic literature (n = 181 texts) dealing with RCR in RC. We found that researcher-creators faced some very different RCR challenges in comparison with their colleagues in the rest of academia. Addressing these issues is important for both the RCR and RC communities in order to ensure that the rapid development of this field occurs in line with the norms of RCR which, nonetheless, should be adapted to respect the particularities of RC and allow its contributions to the academic world. (shrink)

There has been increasing attention to financial conflicts of interest (COI) in public health research and policy making, with concerns that some decisions are not in the public interest. One notable problematic area is expert advisory committee (EAC). While COI management has focused on disclosure, it could go further and assess experts’ degree of (in)dependence with commercial interests. We analyzed COI disclosures of members of Québec’s immunization EAC (in Canada) using (In)DepScale, a tool we developed for assessing experts’ level of (...) (in)dependence. We found great variability of independence with industry and that companies with the highest vaccine sales were predominantly associated with disclosed COIs. We argue that EACs can use the (In)DepScale to better assess and disclose the COIs that affect their experts. Going forward our scale could help manage risk and select members who are less conflicted to foster a culture of transparency and trust in advisors and policy-makers. (shrink)

There is a widely acknowledged shortage of and an increasing demand for transplantable human organs and tissues (e.g., kidney, heart, lung, liver, cornea) in developed and developing countries around the world. In response to this need, Lott and Savulescu (2007) propose the creation of a human embryonic stem (hESC) bank to facilitate the equitable and efficient dissemination of human leukocyte anti- gen (HLA) matched tissues and organs to patients in need of replacement. Although not an unreasonable proposal, the authors go (...) on to make a much stronger claim. They argue that hESCs are such important tools for addressing the massive unmet global need for organs that it is ethically justified to require mandatory banking of spare embryos, and they argue for the use of financial (or other) inducements to procure embryos for the derivation of hESCs. (shrink)

L’idée d’une gouvernance collaborative gagne en popularité. Cependant, comment être véritablement collaboratif ? Les systèmes de prises de décision diversifiés en intervenants doivent composer avec des parties prenantes aux positions, aux rôles, aux intérêts, aux missions, aux observations et aux valeurs différents. Par sa formule facile d’utilisation pour les éthicien·ne·s professionnel·le·s, l’outil de bioéthique co P·R·I·M·O·V (Position, Rôle, Intérêt, Mission, Observation, Valeurs) vise à améliorer la pratique des initiatives technosociales pour un développement durable, collaboratif et démocratique. L’outil reprend la logique (...) d’analyse des conflits d’intérêts (CI) issue des cadres en éthique organisationnelle. Les CI, comme unité analytique en éthique, permettent d’anticiper et de gérer les problèmes pouvant compromettre à court et à long termes les activités d’un programme et sa gouvernance. L’outil a été construit à la suite d’une étude de cas sur la mise en œuvre d’un monitorage de l’utilisation des antibiotiques en santé animale au Québec, Canada. L’usage de cet outil de bioéthique est stratégique et aide à la négociation des positions, puis à la coconstruction d’un référentiel commun entre les parties prenantes en vue de préparer le terrain à une gouvernance collaborative favorisant la coopération. (shrink)

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. (shrink)

Health care providers (HCPs) are routinely placed into morally challenging situations that have the potential to cause moral distress. This is especially true for HCPs working in the military, whether they are on deployment outside their typical contexts of practice such as in disaster relief (e.g., Haiti and the Ebola missions in West Africa), or in more typically military settings such as peace keeping or armed conflicts (e.g., Afghanistan, Syria). Moral distress refers to “painful feelings and/or psychological disequilibrium” (Nilsson, Sjöberg, (...) Kallenberg, & Larsson, 2011, p. 50) that occur when an individual is aware of a morally appropriate action in a moral dilemma but obstruction prevents them from carrying it out, or when in a situation where they must choose between upholding equally treasured but conflicting moral values. Similarly, moral distress can occur when faced with a ‘tragic choice’ where all available courses of action require something of moral significance to be given up, such as surgical triage in a mass casualty event (Hunt, Sinding, & Schwartz, 2012). In the literature, moral distress has been connected to negative psychological effects and even stress related mental health issues including compassion fatigue, burnout, and post-traumatic stress disorder (Owen & Wanzer, 2014; Gustafsson, Eriksson, Strandberg, & Norberg, 2010; Litz, et al., 2009). (shrink)

A subcategory of medical tourism, reproductive tourism has been the subject of much public and policy debate in recent years. Specific concerns include: the exploitation of individuals and communities, access to needed health care services, fair allocation of limited resources, and the quality and safety of services provided by private clinics. To date, the focus of attention has been on the thriving medical and reproductive tourism sectors in Asia and Eastern Europe; there has been much less consideration given to more (...) recent ‘players’ in Latin America, notably fertility clinics in Chile, Brazil, Mexico and Argentina. In this paper, we examine the context-specific ethical and policy implications of private Argentinean fertility clinics that market reproductive services via the internet. Whether or not one agrees that reproductive services should be made available as consumer goods, the fact is that they are provided as such by private clinics around the world. We argue that basic national regulatory mechanisms are required in countries such as Argentina that are marketing fertility services to local and international publics. Specifically, regular oversight of all fertility clinics is essential to ensure that consumer information is accurate and that marketed services are safe and effective. It is in the best interests of consumers, health professionals and policy makers that the reproductive tourism industry adopts safe and responsible medical practices. (shrink)

Jusqu’à présent, les discussions au sein de la communauté universitaire et dans la littérature scientifique sur la conduite responsable en recherche (CRR), incluant l’intégrité scientifique et l’éthique de la recherche, ont principalement été menées par les chercheurs en sciences de la santé et en sciences fondamentales. Préoccupés, à juste titre, par des problèmes d’inconduite, leurs effets négatifs sur la rigueur scientifique et la confiance du public dans l’entreprise de la recherche, ces débats ont conduit à l’élaboration et à la mise (...) en œuvre de lignes directrices nationales et de politiques institutionnelles. Ces lignes directrices visent entre autres à promouvoir la CRR, notamment dans le but de prévenir ces inconduites. Cependant, pour garantir la pertinence et une application appropriée de ces normes à tous les domaines universitaires, il est nécessaire que les sciences humaines et sociales (SHS) contribuent plus directement à ces discussions. Un tel engagement devrait permettre d’exprimer les particularités disciplinaires et méthodologiques des SHS, dont certaines peuvent être très différentes des sciences appliquées et fondamentales. Cela permettrait également de s’assurer que la littérature sur la CRR ainsi que les politiques et les directives qui en découlent soient à la fois fondées sur des principes universellement généralisables, mais aussi appliquées avec nuance afin de refléter la diversité des pratiques disciplinaires. Dans ce chapitre, nous explorons trois grands domaines dans lesquels les SHS pourraient contribuer à façonner les discussions dans la littérature sur la CRR, tout en informant les chercheurs en SHS des meilleures pratiques en matière de CRR : l’autorat/paternité, la collaboration et l’autorégulation. (shrink)

Bioethics experts played a key role in ensuring a coherent ethical response to the COVID-19 pandemic in the fields of healthcare, public health, and scientific research in Canada. In the province of Quebec, a group of academic and practicing bioethicists met periodically in the early months of the pandemic to discuss approaches and solutions to ethical dilemmas encountered during the crisis. These meetings created the opportunity for a national survey of bioethics practitioners from different fields. The survey, in which forty-five (...) Canadian bioethics practitioners (clinical ethicists, ethicist members of REBs and government health policy ethicists, or any bioethicist practicing outside of academia) participated, explored their concerns, challenges and opportunities during the first wave of the pandemic, with the objective of informing bioethics research about the difficulties experienced by bioethicists “in the field”. Participants reported increased stress levels, increased workloads, and a greater proportion of their work being devoted to public health ethics. Most of their concerns focused on groups other than themselves, such as health professionals, patients, research participants, and people in vulnerable socio-economic situations. An optimism about the future of bioethics was noted due to an increased awareness of the importance of bioethics by the public and by health and research institutions. (shrink)

Depuis 2020, le monde a connu une situation sanitaire exceptionnelle à la suite de la pandémie de Covid-19, faisant face à une incertitude dans le monde médical clinique, de la recherche et dans l’ensemble des domaines connexes en santé publique. Le caractère imprévisible et l’absence de données fiables en lien avec ce virus ont fait émerger une quantité d’enjeux éthiques concrets, cela a donc révélé un domaine particulier, la bioéthique, et plus particulièrement une profession, les bioéthiciens. Les « bioéthiciens » (...) se sont fait connaître du grand public en se dressant parfois comme des garde-fous contre des dérives sanitaires, à d’autres moments comme des lanceurs d’alertes face à des injustices naissantes, ou comme critiques, polémistes et parfois même militants dans les médias ou en tant qu’acteurs de première ligne dans les systèmes politico-sanitaires. Ces divers rôles et pratiques illustrent bien la diversité et l’hétérogénéité du domaine de la bioéthique. Toutefois, l’absence de professionnalisation traditionnelle et formelle de la bioéthique complexifie la compréhension de ce champ disciplinaire. Même en Amérique du Nord, où la pratique de la bioéthique est professionnalisée, il ne s’agit toujours pas d’une profession officiellement reconnue et le terme « bioéthicien » lui-même peut être controversé. La forte présence de cette profession durant la pandémie de Covid-19 a révélé l’importance de décrire ce qu’est un bioéthicien, les fonctions qu’il occupe et en quoi consistent ses interventions. Nous apportons cette clarification nécessaire en expliquant la nature de la bioéthique contemporaine dans toute sa diversité. Comme nous l’a démontré la pandémie de Covid-19, les bioéthiciens représentant un soutien et un guide indispensable de nos jours menés par leur esprit critique et leur réflexivité permanente. (shrink)

Dans notre société de plus en plus digitalisée, avons-nous vraiment le choix d’adopter ou non les technologies? Comment cette digitalisation impacte-t-elle les personnes âgées en particulier et son écosystème? Quels sont les enjeux éthiques soulevés par cette digitalisation? Ce texte vise à amener des éléments de réflexions en lien avec ces enjeux selon le point de vue de divers experts des domaines de la technologie, du vieillissement et de la bioéthique. Ces experts se sont rencontrés lors d’un symposium ayant eu (...) lieu à Angers, France, en octobre 2019. Le texte est un compte-rendu des échanges et points de vue de ces experts, ainsi que des discussions ouvertes qu’ils ont eues avec l’assistance, portant sur les principaux enjeux soulevés par cette digitalisation selon la perspective des personnes âgées, des proches-aidants, des soignants, de la société et de la recherche. (shrink)

L’érosion actuelle de la confiance du public envers les campagnes de vaccination et les décisions de politiques publiques qui y sont associées, aggravée par des scandales comme ceux relatifs à la pandémie H1N1 et l’utilisation du Tamiflu™, risque de diminuer de façon significative l’efficacité de ces interventions importantes pour la santé publique. Un manque de confiance de la population envers les acteurs de santé publique peut conduire à une méfiance accrue face aux interventions, pouvant ainsi compromettre l’atteinte des objectifs recherchés (...) par une intervention spécifique et, conséquemment, avoir un impact important sur les bénéfices attendus pour la population visée par cette intervention. Dans la production des avis d’experts, les membres des comités consultatifs d’experts en immunisation (CCEI) peuvent avoir une influence importante sur la prise de décision publique, notamment, sur la sélection par les décideurs de santé publique de vaccins en particulier et la façon dont les campagnes de vaccination seront déployées. En contrepartie de cette influence sur les décisions publiques, une indépendance et une transparence sont attendues de leur part puisque des mécanismes de divulgation et de gestion de conflits d’intérêts (CI) imparfaits peuvent affecter négativement la confiance du public à l’égard de telles décisions. Il apparaît donc important de s’assurer que des mécanismes de gestion des CI, transparents et robustes, existent pour ces comités. Dans cette étude, les avis ou rapports d’évaluation de la pertinence de la vaccination préparés par un CCEI au Québec ont été examinés pour quatre types de maladies évitables par la vaccination (infections invasives à méningocoques et à pneumocoques, coqueluche et virus du papillome humain). Le but était de : 1) identifier les CI divulgués par les membres du CCEI dans leurs rapports comparativement à ceux déclarés dans leurs publications scientifiques pour ces mêmes infections ; 2) analyser la nature des CI (réel, potentiel, apparent, personnel, financier, institutionnel, etc.) et l’impact potentiel (risque) sur la prise de décision impartiale et sur la confiance du public ; et 3) évaluer les mécanismes de gestion de CI actuellement utilisés par ce CCEI. Les résultats de cette étude montrent que très peu de rapports du CCEI contiennent une section sur les CI par rapport à la pléthore divulguée dans les publications scientifiques publiées par les membres du CCEI. De plus, les CI divulgués dans les rapports fréquemment ne correspondent pas à ceux décrits dans les publications scientifiques. Il serait donc important d’introduire des mesures visant à accroître la transparence des experts en immunisation et d’améliorer les mécanismes de divulgation et de gestion des CI afin de veiller à ce que la confiance du public envers les décideurs en santé publique soit maintenue et améliorée. (shrink)

Genetic testing technologies are rapidly moving from the research laboratory to the market place. Very little scholarship considers the implications of private genetic testing for a public health care system such as Canada’s. It is critical to consider how and if these tests should be marketed to, and purchased by, the public. It is also imperative to evaluate the extent to which genetic tests are or should be included in Canada’s public health care system, and the impact of allowing a (...) two-tiered system for genetic testing. A series of threshold tests are presented as ways of clarifying whether a genetic test is morally appropriate, effective and safe, efficient and appropriate for public funding and whether private purchase poses special problems and requires further regulation. These thresholds also identify the research questions around which professional, public and policy debate must be sustained: What is a morally acceptable goal for genetic services? What are the appropriate benefits? What are the risks? When is it acceptable that services are not funded under health care? And how can the harms of private access be managed? (shrink)

The fields of Responsible Research and Innovation (RRI) and participatory foresight seek to establish, and to include publics within, anticipatory governance mechanisms. While scenario-based methods can bring to the publics’ attention the ethical challenges associated to existing technologies, there has been little empirical research examining how, in practice, prospective public deliberative processes should be organized to inform anticipatory governance. The goal of this article is to generate methodological insights into the way such methods can stimulate the public's moral imagination regarding (...) what may (or may not) happen in the future and what should (or should not) happen in the future. Our qualitative analyses draw on a public deliberation study that included videos and online scenarios to support participants’ (n = 57) deliberations about fictional interventions for genetically at-risk individuals. Our findings clarify how participants: (1) challenged key elements of our scenarios; (2) extended several of their technical and moral prospects; (3) engaged personally with others, including our scenarios’ characters; and (4) mobilized the past creatively to reason about the future. Our methodology enabled participants to creatively and empathetically envision complex sociotechnical futures. Yet, important methodological limits should be acknowledged by those who design, implement and use public engagement methods to inform anticipatory governance. (shrink)

Public discussions of ethical issues related to the biotechnology industry tend to treat "biotechnology" as a single, undifferentiated technology. Similarly, the pros and cons associated with this entire sector tend to get lumped together, such that individuals and groups often situate themselves as either "pro-" or "anti-" biotechnology as a whole. But different biotechnologies and their particular application context pose very different challenges for ethical corporate decision-making. Even within a single product category, different specialty products can pose strikingly different ethical (...) challenges. In this paper, we focus on the single over-arching category of "genetic testing" and compare tests for disease susceptibility and drug response. We highlight the diversity of ethical challenges - grouped under the broad categories of "truth in advertising" and "protecting intellectual property" - raised by the commercialization and marketing of these technologies. By examining social and technical differences between genetic tests, and the associated corporate ethics challenges posed by their commercialization, our intent is to contribute to the nascent business ethics literature examining issues raised by the development and marketing of genetic tests. (shrink)

BioéthiqueOnline was launched in March 2012 as a non-peer reviewed journal with the aim of providing a platform to facilitate and encourage the development of a bilingual bioethics community in Canada and internationally. In light of discussions amongst the Editorial Committee over the past few months regarding the growth of the journal, we have decided to move to a peer-reviewed process for articles submitted to the journal.

Concern about the ethics of clinical drug trials research on patients and healthy volunteers has been the subject of significant ethical analysis and policy development—protocols are reviewed by Research Ethics Committees and subjects are protected by informed consent procedures. More recently attention has begun to be focused on DNA banking for clinical and pharmacogenetics research. It is, however, surprising how little attention has been paid to the commercial nature of such research, or the unique issues that present when subjects are (...) asked to consent to the storage of biological samples. Our contention is that in the context of pharmacogenetic add-on studies to clinical drug trials, the doctrine of informed consent fails to cover the broader range of social and ethical issues. Applying a sociological perspective, we foreground issues of patient/subject participation or ‘work’, the ambiguity of research subject altruism, and the divided loyalties facing many physicians conducting clinical research. By demonstrating the complexity of patient and physician involvement in clinical drug trials, we argue for more comprehensive ethical review and oversight that moves beyond reliance on informed consent to incorporate understandings of the social, political and cultural elements that underpin the diversity of ethical issues arising in the research context. (shrink)

Promotion of prescription drugs may appear to be severely limited in some jurisdictions due to restrictions on direct-to-consumer advertising. However, in most jurisdictions, strategies exist to raise consumer awareness about prescription drugs, notably through the deployment of direct-to-consumer information campaigns that encourage patients to seek help for particular medical conditions. In Canada, DTCI is presented by industry and regulated by Health Canada as being purely informational activities, but their design and integration in broader promotional campaigns raise very similar ethical concerns (...) as those associated with DTCA. Specifically, DTCI can be an effective means of familiarizing the public with the scope and benefits of a particular prescription drug and so, like DTCA, can promote increased patient-consumer demand and thus a problematic rise in the prescribing and use of medications that may be neither the most appropriate nor the most cost-effective. Yet, with DTCI the industry is playing within the existing rules and regulations set by health regulators. To respond appropriately to this regulatory incoherence, we argue that DTCI should be regulated as a type of direct-to-consumer indirect advertising. Even if the case and specific regulations presented here are Canadian, the implications extend to every country that has a partial or total prohibition on DTCA. (shrink)

Antimicrobial resistance is a growing public health concern and is associated with the over- or inappropriate use of antimicrobials in both humans and agriculture. While there has been reco- gnition of this problem on the part of agricultural and public health authorities, there has none- theless been significant difficulty in translating policy recommendations into practical guidelines. In this paper, we examine the process of public health policy development in Quebec agriculture, with a focus on the case of pork production and (...) the role of food animal veterinarians in policy making. We argue that a tendency to employ strictly techno-scientific risk analyses of antimicro- bial use ignores the fundamental social, economic and political realities of key stakeholders and so limits the applicability of policy recommendations developed by government advisory groups. In particular, we suggest that veterinarians’ personal and professional interests, and their ethi- cal norms of practice, are key factors to both the problem of and the solution to the current over-reliance on antimicrobials in food production. (shrink)

Background: In biomedical research, there have been numerous scandals highlighting conflicts of interest (COIs) leading to significant bias in judgment and questionable practices. Academic institutions, journals, and funding agencies have developed and enforced policies to mitigate issues related to COI, especially surrounding financial interests. After a case of editorial COI in a prominent bioethics journal, there is concern that the same level of oversight regarding COIs in the biomedical sciences may not apply to the field of bioethics. In this study, (...) we examined the availability and comprehensiveness of COI policies for authors, peer reviewers, and editors of bioethics journals. Methods: After developing a codebook, we analyzed the content of online COI policies of 63 bioethics journals, along with policy information provided by journal editors that was not publicly available. Results: Just over half of the bioethics journals had COI policies for authors (57%), and only 25% for peer reviewers and 19% for editors. There was significant variation among policies regarding definitions, the types of COIs described, the management mechanisms, and the consequences for noncompliance. Definitions and descriptions centered on financial COIs, followed by personal and professional relationships. Almost all COI policies required disclosure of interests for authors as the primary management mechanism. Very few journals outlined consequences for noncompliance with COI policies or provided additional resources. Conclusion: Compared to other studies of biomedical journals, a much lower percentage of bioethics journals have COI policies and these vary substantially in content. The bioethics publishing community needs to develop robust policies for authors, peer reviewers, and editors and these should be made publicly available to enhance academic and public trust in bioethics scholarship. (shrink)

In Québec, the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information provides an exception to transparency to most public institutions where public health research is conducted by allowing them to not disclose their uses of personal data. This exceptionalism is ethically problematic due to important concerns and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

Imagine that you are part of the editorial board of a young bioethics journal committed to publishing open access (OA) and to ensuring accessibility to high quality and innovative scholarship. To support junior and interna- tional scholars who might not otherwise find places for their work in the leading Western bioethics journals, you do not charge author fees. Imagine also that you have no financial resources to pay for a professional website, auto- mated submissions manager, or even a part-time coordina- (...) tor: Your government has cut all grants for journals, you cannot go to industry for private funding because of the evident risk of apparent conflicts of interest, and your strapped-for-cash institution cannot afford to offer you any support. If one of the major publishers were to approach you to sign a deal, the temptation would be strong to accept. However, this would likely mean putting aside your ideals: It would be impossible to stay a “Green OA” publication (i.e., free of author publication charges) or supportive of junior and international scholars (because of pressures to “increase credibility” through artificially high rejection rates, for example). (shrink)

After six years (2012-2017) of publishing innovative bioethics scholarship, BioéthiqueOnline becomes the Canadian Journal of Bioethics/Revue canadienne de bioéthique. As executive editors of BioéthiqueOnline, we frequently heard from members of the Canadian bioethics community of the need to develop a platform with the right branding to showcase the value and the richness of our collective reflections, both locally and internationally. Following discussions with colleagues across the country, we came to the conclusion that BioéthiqueOnline had developed a unique expertise publishing bioethics (...) scholarship, but that the original name, created to convey the bilingual and open access mission of the journal, was not enthusiastically received. So the time has come to upgrade and rebrand as the Canadian Journal of Bioethics (CJB). (shrink)

While every health care system stakeholder would seem to be concerned with obtaining the greatest value from a given technology, there is often a disconnect in the perception of value between a technology’s promoters and those responsible for the ultimate decision as to whether or not to pay for it. Adopting an empirical ethics approach, this paper examines how five Canadian medical device manufacturers, via their websites, frame the corporate “value proposition” of their innovation and seek to respond to what (...) they consider the key expectations of their customers. Our analysis shows that the manufacturers’ framing strategies combine claims that relate to valuable socio-technical goals and features such as prevention, efficiency, sense of security, real-time feedback, ease of use and flexibility, all elements that likely resonate with a large spectrum of health care system stakeholders. The websites do not describe, however, how the innovations may impact health care delivery and tend to obfuscate the decisional trade-offs these innovations represent from a health care system perspective. Such framing strategies, we argue, tend to bolster physicians’ and patients’ expectations and provide a large set of stakeholders with powerful rhetorical tools that may influence the health policy arena. Because these strategies are difficult to counter given the paucity of evidence and its limited use in policymaking, establishing sound collective health care priorities will require solid critiques of how certain kinds of medical devices may provide a better (i.e., more valuable) response to health care needs when compared to others. (shrink)

Ethics as a field should, we argue, pay more attention to the (eco)system. Van Rensselaer Potter, one of the pillars of contemporary bioethics, advocated for a global “bios” ethics that literally and metaphorically bridges the gap between biological knowledge and ethical reflection. However, a Potterian Bio-Ethics faces a major obstacle: its acentric focus. Consequently, Global Bio-Ethics remains opaque for those trained under the anthropocentric biomedical ethics that instrumentalizes the environment. This paper aims to demystify two key concepts—Globality and Complexity—and show (...) how a Potterian Bio-Ethics can effectively bridge the gap between knowledge-building in ecology and policy-making in the context of medical and environmental practices. Drawing on an experience in Québec, Canada, to mitigate the threat of antimicrobial resistance using a biosurveillance system, we show the utility of having ethics as an integral part of ecosystem(ic) approaches to bridge health and environment. We conclude by arguing that bioethics (and bioethicists) should become a locus for cascading communication, collaboration, and translation by co-constructing biosurveillance data governance. (shrink)