The vast majority of health research resources are used to study conditions that affect a small, advantaged portion of the global population. This distribution has been widely criticized as inequitable and threatens to exacerbate health disparities. However, there has been little systematic work on what individual health research funders ought to do in response. In this article, we analyze the general and special duties of research funders to the different populations that might benefit from health research. (...) We assess how these duties apply to governmental, multilateral, nonprofit, and for-profit organizations. We thereby derive a framework for how different types of funders should take the beneficiaries of research into account when they allocate scarce research resources. (shrink)

Most public and non-profit organisations that fund health research provide the majority of their funding in the form of grants. The calls for grant applications are often untargeted, such that a wide variety of applications may compete for the same funding. The grant review process therefore plays a critical role in determining how limited research resources are allocated. Despite this, little attention has been paid to whether grant review criteria align with widely endorsed ethical criteria for allocating health (...) research resources. Here, we analyse the criteria and processes that ten of the largest public and non-profit research funders use to choose between competing grant applications. Our data suggest that research funders rarely instruct reviewers to consider disease burden or to prioritise research for sicker or more disadvantaged populations, and typically only include scientists in the review processes. This is liable to undermine efforts to link research funding to health needs. (shrink)

Department of Political Studies, Queen's University, 99 University Avenue, Kingston, Ontario, Canada, K7L 3N6. Email: farrelly{at}queensu.ca ' + u + '@' + d + ' '//--> Abstract Should we invest more public funding in basic aging research that could lead to medical interventions that permit us to safely and effectively retard human aging? In this paper I make the case for answering in the affirmative. I examine, and critique, what I call the Fairness Objection to making aging research (...) a greater priority than it currently is. The Fairness Objection presumes that support for aging research is limited to a simplistic utilitarian justification. That is, a mode of justification that is aggregative and permits imposing high costs on a few so that small benefits could be enjoyed by numerous recipients. I develop two arguments to refute the Fairness Objection. The Fairness Objection mischaracterizes the utilitarian argument for retarding human aging. It does so by invoking the fallacious conceptual distinction between "saving lives" and "extending lives", as well as making a number of mistaken assumptions concerning the likely benefits of retarding human aging. Secondly, I argue that the case for tackling aging can be made on contractualist , in addition to utilitarian, grounds. Because the harms of senescence are "morally relevant" to the harms of disease, contractualists can permit aggregation within lives. And thus no one could reasonably reject, I contend, a principle that makes the aspiration to tackle human aging more of a priority than it currently is. CiteULike Connotea Del.icio.us What's this? (shrink)

The term “ectogenesis” has been around for about a century now, and it is generally understood as the development of embryos and fetuses outside a uterus. In this sense, all in vitro fertilization is ectogenesis, but in vitro development can only proceed to a certain point, at which time human embryos are then either implanted in the attempt to achieve a pregnancy, frozen for that use in the future, used in research, or discarded.

Time and resource constraints, combined with competing priorities, mean that research prioritization is a critical ethical consideration in pandemics and emergencies, given the increased need for relevant research findings to address health needs, and the multiple adverse ways that emergencies can impact capacities to conduct research. At international, national and local levels, careful consideration is needed of which research topics should be prioritized and on what grounds. This needs to take into account the ethically significant (...) considerations that should inform prioritization; existing frameworks to guide prioritization decisions; and the consequences associated with prioritizing or de-prioritizing research. The need to prioritize research that is directly responsive to the pandemic may generate debate about which types of research should be prioritised, and within fields of research, which studies should be continued, paused, or re-oriented. In determining which research proposals may have the greatest likelihood of reducing urgent epidemic health burdens, both the nature and distribution of such burdens are key considerations. Epidemics and pandemics typically disproportionately affect the most disadvantaged and vulnerable people in society, highlighting the necessity of inclusive and responsive approaches, which evaluate not just which research approaches have the greatest potential public health benefit, but also the likelihood that they will help address inequities. Key questions also arise when determining if current studies should be de-escalated or stopped, particularly when this may result in highly compromised results. It is also important to consider what obligations arise for research communities (including funders) to pledge to taking the outcomes of research prioritisation processes into account. The case studies in this chapter prompt consideration of how qualitative research into the impacts of isolation should be prioritised, and whether and how research prioritization measures should be responsive to widespread use of traditional medicine and off-label use of medications. The cases also highlight issues that research teams may face as research priorities are re-evaluated in pandemics, including whether and how to redesign proposed research in response to the logistical challenges posed by the pandemic and evolving pandemic research priorities. (shrink)

BackgroundEngagement of people with lived experience and members of the public is an ethically and scientifically essential component of health research. Authentic engagement means they are involved as full partners in research projects. Yet engagement as partnership is uncommon in practice, especially during priority-setting for research projects. What is needed for agenda-setting to be shared by researchers and people with lived experience and/or members of the public (or organisations representing them)? At present, little ethical guidance exists on (...) this matter, particularly that which has been informed by the perspectives of people with lived experience and members of the public. This article provides initial evidence about what they think are essential foundations and barriers to shared decision-making in health research priority-setting and health research more broadly.MethodsAn exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia.ResultsThree main types of foundations were thought to be essential to have in place before shared decision-making can occur in health research priority-setting: relational, environmental, and personal. Collectively, the three types of foundations addressed many (but not all) of the barriers to power sharing identified by interviewees.ConclusionsBased on study findings, suggestions are made for what researchers, engagement practitioners, research institutions, and funders should do in their policy and practice to support meaningful engagement. Finally, key international research ethics guidelines on community engagement are considered in light of study findings. (shrink)

This paper addresses the appropriate role for public input into priority setting for federal funding of biomedical research and development. The public should be involved in priority setting because researchers should be publicly accountable, because the public has a right to oversee government activities, and because public input is needed to assess normative questions related to the burden of disease and health care needs. On the other hand, political factors arising from public input can also hamper the governmentÕs ability (...) to allocate funds according to the burden of disease or to promote the progress of biomedical science. When it comes to public input into R & D priority setting, more is not necessarily better. What is needed is the right balance of public and expert decision making with respect to the setting of biomedical R & D priorities. (shrink)

Engaging citizens is vital to achieving people‐centred health research. This paper aims to put attention to dynamics of power and dynamics of difference back at the centre of citizen engagement in health research priority‐setting. Without attention to power and difference, engagement can lead to presence without voice and voice without influence, particularly for disadvantaged and marginalised groups. By analysing six key bodies of literature, the paper first identifies the different components of engagement—who initiates, for what purpose, who participates, (...) and how they participate—and the dynamics of power and dynamics of difference relevant to them. For each component of engagement, the ethical considerations relating to those dimensions of power and dimensions of difference are characterised for the research priority‐setting context and preliminary guidance on how they might be addressed is provided. An initial framework comprised of a series of questions reflecting these ethical considerations has been developed for use by researchers and citizens when designing engagement processes for research projects. Where researchers and citizens attend to the framework's questions and then revise their priority‐setting processes’ design to better represent diversity and mitigate power disparities, more inclusive citizen engagement is promoted. Disadvantaged and marginalised groups are more likely to be present and heard, which, in turn, will help generate research projects with topics and questions that encompass and more accurately reflect their health needs. (shrink)

We respond to open peer commentaries on our target article, "Health Research Priority Setting: The Duties of Individual Funders".

Despite the international interest in priority setting as an important tool for health policy, there has been comparatively little interest in the setting of research priorities. One of the few places where there has been such an interest is at the National Institutes of Health (NIH) in the United States. Under pressure from Congress to explain its priority setting process, the NIH has tried to explain the criteria and process it uses. The NIH procedure is described, and the (...) problems created by the criteria it uses are analyzed. Although it uses the language of priority setting, it is uncertain whether it does have a real method of setting priorities. Nonetheless, despite the lack of a method, the results of its work are lauded. In the long run, however, NIH will need a more rigorous method of setting priorities. (shrink)

Thus far, little work in bioethics has specifically focused on global health research priority-setting. Yet features of global health research priority-setting raise ethical considerations and concerns related to health justice. For example, such processes are often exclusively disease-driven, meaning they rely heavily on burden of disease considerations. They, therefore, tend to undervalue non-biomedical research topics, which have been identified as essential to helping reduce health disparities. In recognition of these ethical concerns and the limited scholarship and dialogue (...) addressing them, we convened an international workshop in September 2015. The workshop aimed to initiate discussion on the appropriate relationship between global and national levels of health research priority-setting and to begin exploring what might be ethically required for priority-setting at each of those levels. This paper comprises our reflections following the workshop. Its main objective is to launch a research agenda for the ethics of global health research priority-setting. We identify three domains of global health research priority-setting—scope, underlying values and substantive requirements, and procedural considerations. For each domain, specific research questions are highlighted and why they need to be explored is explained. Some preliminary thoughts and normative arguments as to how the research questions might be answered are also offered. For example, we provide initial ideas about the appropriate relationship between different priority-setting levels and what values and substantive considerations should guide or underpin global health research priority-setting as a matter of justice. We anticipate that framing a new research agenda for the ethics of global health research priority-setting will spur ethicists, researchers, and policymakers to refocus their efforts on developing more rigorous and ethically sound approaches to priority-setting. (shrink)

This article draws attention to the limited amount of scholarship on what constitutes fairness and equity in resource allocation to health research by individual funders. It identifies three key decisions of ethical significance about resource allocation that research funders make regularly and calls for prioritizing scholarship on those topics – namely, how health resources should be fairly apportioned amongst public health and health care delivery versus health research, how health research resources should be fairly allocated between (...) health problems experienced domestically versus other health problems typically experienced by disadvantaged populations outside the funder's country, and how domestic and non-domestic health research funding should be further apportioned to different areas, e.g. types of research and recipients. These three topics should be priorities for bioethics research because their outcomes have a substantial bearing on the achievement of health justice. The proposed agenda aims to move discussion on the ethics of health research funding beyond its current focus on the mismatch between worldwide basic and clinical research investment and the global burden of disease. Individual funders’ decision-making on whether and to what extent to allocate resources to non-domestic health research, health systems research, research on the social determinants of health, capacity development, and recipients in certain countries should also be the focus of ethical scrutiny. (shrink)

In When Clinical Trials Compete: Prioritizing Study Recruitment, Gelinas et al tackle an important issue—study non-completion—and draw conclusions with which we largely agree. Most importantly, we accept that setting priorities among competing research studies is necessary and should be informed by ethical analysis. We disagree with the conclusion of Gelinas et al that this priority setting should take place at the level of the individual research institution. At a minimum, they should consider other actors who might be (...) better suited for this role instead of—or alongside—the institutions that host research. Our view is motivated by three main considerations. First, research institutions have significant latitude to promote their own interests, and there is reason to suspect that their interests do not closely align with the interests of the public. Thus, asking research institutions to set research priorities may result in the selection of studies with suboptimal social value. Second, a large proportion of clinical trials recruits participants at multiple institutions.1 If each institution sets its own priorities, we can expect discrepancies between the priorities set by partner institutions. These discrepancies may delay and discourage collaborative research projects. Finally, we suspect that a great deal of recruitment competition occurs between, rather than within, research institutions. Setting priorities only at …. (shrink)

Priority setting in health care is ubiquitous and health authorities are increasingly recognising the need for priority setting guidelines to ensure efficient, fair, and equitable resource allocation. While cost-effectiveness concerns seem to dominate many policies, the tension between utilitarian and deontological concerns is salient to many, and various severity criteria appear to fill this gap. Severity, then, must be subjected to rigorous ethical and philosophical analysis. Here we first give a brief history of the path to today’s severity criteria in (...) Norway and Sweden. The Scandinavian perspective on severity might be conducive to the international discussion, given its long-standing use as a priority setting criterion, despite having reached rather different conclusions so far. We then argue that severity can be viewed as a multidimensional concept, drawing on accounts of need, urgency, fairness, duty to save lives, and human dignity. Such concerns will often be relative to local mores, and the weighting placed on the various dimensions cannot be expected to be fixed. Thirdly, we present what we think are the most pertinent questions to answer about severity in order to facilitate decision making in the coming years of increased scarcity, and to further the understanding of underlying assumptions and values that go into these decisions. We conclude that severity is poorly understood, and that the topic needs substantial further inquiry; thus we hope this article may set a challenging and important research agenda. (shrink)

Priorities in Medical Research was published in 1988 by a select committee of the House of Lords. The report ushered in an era of NHS research and development that lasted from 2001 to 2006. The inquiry's origins lay in concerns about academic medicine in the United Kingdom, yet PMR gave relatively little attention to this subject. Instead the report focused critically on the disconnect between the Department of Health and the NHS in R & D. This, the (...) committee argued, had led to the neglect of research into health services and public health. To sidestep the report's unwelcome proposal for a National Health Research Agency, the department eventually grafted R & D management onto structures created as part of wider NHS reforms. The Medical Research Council successfully pursued a strategy of keeping the committee's attention away from sensitive aspects of its own programme. The final focus of PMR was shaped by an alignment between committee members with an industrial view of research and champions of health services research. The actions of the various actors involved are interpreted using elite models of the state, and the applicability of these models is critically examined. (shrink)

In their essay, ‘When Clinical Trials Compete: Prioritizing Study Recruitment’, Gelinas et al describe a collective action problem that can arise if multiple trials at a single institution are all trying to recruit participants from the same patient population. Each trial may be addressing an important question, and each will need a certain number of participants to provide an informative answer. But because these trials are all recruiting from the same population, it is possible that there will not be enough (...) participants to go around. It may turn out, then, that none successfully achieves its target sample size and all end up being uninformative or less informative than hoped. As Gelinas et al observe, these kinds of uninformative or less-informative trials are ethically problematic, since they fail to fully redeem participant risks and burdens with adequate gains in generalisable knowledge. Such trials also represent wasteful or inefficient research activities, since each necessarily has a human and material cost, but then fails to offset these costs by providing a definitive answer to the research …. (shrink)

A general criterion for distinguishing between epistemic and non-epistemic values is that the former promotes the attainment of truth whereas the latter does not. Daniel Steel is a proponent of this criterion, although it was initially proposed by McMullin. There are at least two consequences of this criterion; it always prioritizes epistemic values over non-epistemic values in scientific research, and it overlooks the diverse aims of science, especially the aims of regulatory or policy-oriented science. This criterion assumes the lexical (...) priority of truth or lexical priority of evidence. This paper attempts to show a few inadequacies of this assumption. The paper also demonstrates why epistemic priority over non-epistemic values is a problematic stance and how constraining the role of non-epistemic values as ‘tiebreakers’ may undermine the diverse aims of science. (shrink)

A general criterion for distinguishing between epistemic and non-epistemic values is that the former promotes the attainment of truth whereas the latter does not. Daniel Steel is a proponent of this criterion, although it was initially proposed by McMullin. There are at least two consequences of this criterion; it always prioritizes epistemic values over non-epistemic values in scientific research, and it overlooks the diverse aims of science, especially the aims of regulatory or policy-oriented science. This criterion assumes the lexical (...) priority of truth or lexical priority of evidence. This paper attempts to show a few inadequacies of this assumption. The paper also demonstrates why epistemic priority over non-epistemic values is a problematic stance and how constraining the role of non-epistemic values as ‘tiebreakers’ may undermine the diverse aims of science. (shrink)

In this study the relationship of religiosity and value priorities is differentiated, based on a multidimensional measurement of different contents of religiosity. The structure of values is conceptualized using Schwartz' two orthogonal dimensions of Self-transcendence vs. Self-enhancement and Openness to change vs. Conservation. The relations between these two dimensions and eight religious contents, ranging from open-minded to more close-minded forms of religiosity, were tested in a sample of church attenders , gathered in Germany. The results show, that depending on (...) the content of religiosity, different values are preferred . The results indicate the importance of the content of religiosity for predicting value-loaded behaviors. (shrink)

In this study the relationship of religiosity and value priorities is differentiated, based on a multidimensional measurement of different contents of religiosity. The structure of values is conceptualized using Schwartz' two orthogonal dimensions of Self-transcendence vs. Self-enhancement and Openness to change vs. Conservation. The relations between these two dimensions and eight religious contents, ranging from open-minded to more close-minded forms of religiosity, were tested in a sample of church attenders , gathered in Germany. The results show, that depending on (...) the content of religiosity, different values are preferred . The results indicate the importance of the content of religiosity for predicting value-loaded behaviors. (shrink)

This paper considers which applications of research into ageing should be supported. It assumes that both applications which enhance the quality of life for the elderly and applications which extend the life-span are desirable, and then considers which should be prioritised. It is argued that in the present state of our knowledge and under present social and medical conditions there are a number of reasons for favouring the improvement of the quality of life over increasing the life-span, and thinking (...) that this is likely to do more good and for more people. (shrink)

Background Standard interpretations of the ethical principle of respect for persons have not incorporated the views and values of patients, especially patients from groups underrepresented in research. This limits the ability of research ethics scholarship, guidance, and oversight to support inclusive, patient-centered research. This study aimed to identify the practical approaches that patients in community-based settings value most for conveying respect in genomics research. Methods We conducted a 3-round, web-based survey using the modified Delphi technique to (...) identify areas of agreement among English-speaking patients at primary care clinics in Washington State and Idaho who had a personal or family history of cancer. In Round 1, respondents rated the importance of 17 items, identified in prior qualitative work, for feeling respected. In Round 2, respondents re-rated each item after reviewing overall group ratings. In Round 3, respondents ranked a subset of the 8 most highly rated items. We calculated each item’s mean and median rankings in Round 3 to identify which approaches were most important for feeling respected in research. Results Forty-one patients consented to the survey, 21 (51%) completed Round 1, and 18 (86% of Round 1) completed each of Rounds 2 and 3. Two sets of rankings were excluded from analysis as speed of response suggested they had not completed the Round 3 ranking task. Respondents prioritized provision of study information to support decision-making (mean ranking 2.6 out of 8; median ranking 1.5) and interactions with research staff characterized by kindness, patience, and a lack of judgment (mean ranking 2.8; median ranking 2) as the most important approaches for conveying respect. Conclusions Informed consent and interpersonal interactions are key ways that research participants experience respect. These can be supported by other approaches to respecting participants, especially when consent and/or direct interactions are infeasible. Future work should continue to engage with patients in community-based settings to identify best practices for research without consent and examine unique perspectives across clinical and demographic groups in different types of research. (shrink)

The public purse is responsible for funding almost all autism spectrum disorders (ASD) research in Canada (as per Canadian Institutes of Health Research [CIHR]) and for providing some of the existing services and supports for this population. In this article, we consider various reasons why Canada should be concerned to ensure a more equitable distribution of relevant public funding for ASD research than is currently the case to meet the express needs and interests of the diversity of (...) autism stakeholders. As such, we report data to show that CIHR-supported ASD research from the period of 2000–2010 demonstrates a bias focussed on the aetiology of the condition revealing a disproportionate emphasis on only two (Biomedical and Clinical) out of the four research pillars avowed by CIHR, with a comparative lack of fiscal resources committed to Health Systems and Services and Population and Public Health research. We advance certain normative and prudential reasons for funding more Health Systems and Services and Population and Public Health ASD research in Canada. In our view, this would seem to follow from CIHR’s official mandate ‘as a flexible mechanism that will continually align health research funding with changes in the manner in which health problems and opportunities are identified, understood and addressed’. (shrink)

The organizations that fund bioethics research receive many more eligible grant applications than they can support. Academic positions that support bioethics research are likewise scarce. As a resu...

At the onset of the COVID-19 pandemic in the United States, stay-at-home orders disrupted normal research operations. Principal investigators (PIs) had to make decisions about conducting and staffing essential research under unprecedented, rapidly changing conditions. These decisions also had to be made amid other substantial work and life stressors, like pressures to be productive and staying healthy. Using survey methods, we asked PIs funded by the National Institutes of Health and the National Science Foundation (N = 930) to (...) rate how they prioritized different considerations, such as personal risks, risks to research personnel, and career consequences, when making decisions. They also reported how difficult they found these choices and associated symptoms of stress. Using a checklist, PIs indicated those factors in their research environments that made their decisions easier (i.e., facilitators) or more difficult (i.e., barriers) to make. Finally, PIs also indicated how satisfied they were with their decisions and management of research during the disruption. Descriptive statistics summarize PIs’ responses and inferential tests explore whether responses varied by academic rank or gender. PIs overall reported prioritizing the well-being and perspectives of research personnel, and they perceived more facilitators than barriers. Early-career faculty, however, rated concerns about their careers and productivity as higher priorities compared to their senior counterparts. Early-career faculty also perceived greater difficulty and stress, more barriers, fewer facilitators, and had less satisfaction with their decisions. Women rated several interpersonal concerns about their research personnel more highly than men and reported greater stress. The experience and perceptions of researchers during the COVID-19 pandemic can inform policies and practices when planning for future crises and recovering from the pandemic. (shrink)

I will defend two claims. First, Schaffer's priority monism is in tension with many research programs in quantum gravity. Second, priority monism can be modified into a view more amenable to this physics. The first claim is grounded in the fact that promising approaches to quantum gravity such as loop quantum gravity or string theory deny the fundamental reality of spacetime. Since fundamental spacetime plays an important role in Schaffer's priority monism by being identified with the fundamental structure, namely (...) the cosmos, the disappearance of spacetime in these views might undermine classical priority monism. My second claim is that priority monism can avoid this issue with two moves: first, in dropping one of its core assumptions, namely that the fundamental structure is spatio-temporal, second, by identifying the connection between the non-spatio-temporal structure and the derivative spatio-temporal structure with mereological composition. (shrink)

Fabi and Goldberg have made an important contribution to the understanding of how bioethicists do bioethics, or more precisely, how bioethics research funding mechanisms reflect the values o...

At times scientists manipulate their community's perception of scientific discoveries. The following case study illustrates the extent to which a community's understanding of a discovery was influenced by one of its members. In the 1870s the British physiologist Arthur Gamgee undertook a campaign to insure Andrew Buchanan of Glasgow credit for his blood clotting research, conducted from the early 1830s to the mid-1840s. Gamgee endeavored to establish Buchanan as the discoverer of fibrin ferment, a clotting factor first isolated and (...) named in 1872 by Alexander Schmidt of Dorpat. Gamgee's campaign included the solicitation of support for Buchanan from contemporary physiologists, by discussing Buchanan's work in his publications and by demonstrating through experimentation that the material extracted from Buchanan's washed blood clots was similar, if not identical, to Schmidt's fibrin ferment. Gamgee's influence on the scientific community's perception of the discovery was effective, and Buchanan is generally considered the discoverer of the clotting factor and Schmidt its rediscoverer. However, examination of Buchanan's research in blood coagulation and the context in which he conducted the research reveals that Buchanan is neither the discoverer of fibrin ferment nor even a precursor to Schmidt. (shrink)

In this paper, we first briefly describe neuroimaging technology, our reasons for studying magnetic resonance imaging (MRI) technology, and then provide a discussion of what we have identified as priority issues for paediatric MRI research. We examine the issues of respectful involvement of children in the consent process as well as privacy and confidentiality for this group of MRI research participants. In addition, we explore the implications of unexpected findings for paediatric MRI research participants. Finally, we explore (...) the ethical issues concerning advances in functional MRI. This paper aims to provide a clear description of priority paediatric MRI research ethics issues to make some preliminary recommendations regarding next steps. (shrink)

Despite the evidence showing the promise of HIV treatment as prevention (TasP) in reducing HIV incidence, a variety of ethical questions surrounding the implementation and “scaling up” of TasP have been articulated by a variety of stakeholders including scientists, community activists and government officials. Given the high profile and potential promise of TasP in combatting the global HIV epidemic, an explicit and transparent research priority-setting process is critical to inform ongoing ethical discussions pertaining to TasP.

BackgroundCommunities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engagement can be tokenistic. So far, there remains limited ethical guidance on how to share power with communities, particularly those considered disadvantaged and marginalised, in global health research priority-setting. This paper generates a comprehensive, empirically-based “ethical toolkit” to provide such guidance, further strengthening a previously proposed checklist version of (...) the toolkit. The toolkit places community engagement and power-sharing at the heart of priority-setting for global health research projects.MethodsA two part method was used to generate a revised toolkit. Part one was conceptual, consisting of novel analysis of empirical data (previously collected as part of the same overall project) to identify additional concepts relevant to power-sharing between researchers and communities in global health research priority-setting. Part two was empirical, seeking feedback on the initial checklist version of the toolkit in interviews with researchers, ethicists, community engagement practitioners, and community organisation staff.ResultsThe conceptual process identified two additional components of engagement and six additional features that affect who defines, who participates, and who is heard in research priority-setting. New ethical considerations related to sharing power in global health research priority-setting are articulated in relation to those components and features. Interviewees provided suggestions for revising the toolkit’s content and language. The implications of these suggestions and the analytic process for the toolkit are described.ConclusionsThe resultant toolkit is a reflective project planning aid for researchers and their community partners to employ before priority-setting is undertaken for global health research projects. It consists of three worksheets (to be completed collectively) and a companion document detailing how to use them. It is more comprehensive than the initial toolkit, as worksheet questions for discussion cover all phases of priority-setting. (shrink)

Background There is now rising consensus that community engagement is ethically and scientifically essential for all types of health research. Yet debate continues about the moral aims, methods and appropriate timing in the research cycle for community engagement to occur, and whether the answer should vary between different types of health research. Co-design and collaborative partnership approaches that involve engagement during priority-setting, for example, are common in many forms of applied health research but are not regular (...) practice in biomedical research. In this study, we empirically examine the normative question: should communities be engaged when setting priorities for biomedical research projects, and, if so, how and for what purpose? Methods We conducted in-depth interviews with 31 members of the biomedical research community from the UK, Australia, and African countries who had engaged communities in their work. Interview data were thematically analysed. Results Our study shows that biomedical researchers and community engagement experts strongly support engagement in biomedical research priority-setting, except under certain circumstances where it may be harmful to communities. However, they gave two distinct responses on what ethical purpose it should serve—either empowerment or instrumental goals—and their perspectives on how it should achieve those goals also varied. Three engagement approaches were suggested: community-initiated, synergistic, and consultative. Pre-engagement essentials and barriers to meaningful engagement in biomedical research priority-setting are also reported. Conclusions This study offers initial evidence that meaningful engagement in priority-setting should potentially be defined slightly differently for biomedical research relative to certain types of applied health research and that engagement practice in biomedical research should not be dominated by instrumental goals and approaches, as is presently the case. (shrink)

Background:The global COVID-19 pandemic has imposed challenges on healthcare systems and professionals worldwide and introduced a ´maelstrom´ of ethical dilemmas. How ethically demanding situations are handled affects employees’ moral stress and job satisfaction.Aim:Describe priority-setting dilemmas, moral distress and support experienced by nurses and physicians across medical specialties in the early phase of the COVID-19 pandemic in Western Norway.Research design:A cross-sectional hospital-based survey was conducted from 23 April to 11 May 2020.Ethical considerations:Ethical approval granted by the Regional Research Ethics (...) Committee in Western Norway (131421).Findings:Among the 1606 respondents, 67% had experienced priority-setting dilemmas the previous two weeks. Healthcare workers who were directly involved in COVID-19 care, were redeployed or worked in psychiatry/addiction medicine experienced it more often. Although 59% of the respondents had seen adverse consequences due to resource scarcity, severe consequences were rare. Moral distress levels were generally low (2.9 on a 0–10 scale), but higher in selected groups (redeployed, managers and working in psychiatry/addiction medicine). Backing from existing collegial and managerial structures and routines, such as discussions with colleagues and receiving updates and information from managers that listened and acted upon feedback, were found more helpful than external support mechanisms. Priority-setting guidelines were also helpful.Discussion:By including all medical specialties, nurses and physicians, and various institutions, the study provides information on how the COVID-19 mitigation also influenced those not directly involved in the COVID-19 treatment of patients. In the next stages of the pandemic response, support for healthcare professionals directly involved in outbreak-affected patients, those redeployed or those most impacted by mitigation strategies must be a priority.Conclusion:Empirical research of healthcare workers experiences under a pandemic are important to identify groups at risks and useful support mechanisms. (shrink)