Defending and Defining Environmental Responsibilities for the Health Research Sector.

Six planetary boundaries have already been exceeded, including climate change, loss of biodiversity, chemical pollution, and land-system change. The health research sector contributes to the environmental crisis we are facing, though to a lesser extent than healthcare or agriculture sectors. It could take steps to reduce its environmental impact but generally has not done so, even as the planetary emergency worsens. So far, the normative case for why the health research sector should rectify that failure has not been made. This paper argues strong philosophical grounds, derived from theories of health and social justice, exist to support the claim that the sector has a duty to avoid or minimise causing or contributing to ecological harms that threaten human health or worsen health inequity. The paper next develops ideas about the duty's content, explaining why it should entail more than reducing carbon emissions, and considers what limits might be placed on the duty.

Expanding health justice to consider the environment: how can bioethics avoid reinforcing epistemic injustice?

We are in the midst of a global crisis of climate change and environmental degradation to which the healthcare sector directly contributes. Yet conceptions of health justice have little to say about the environment. They purport societies should ensure adequate health for their populations but fail to require doing so in ways that avoid environmental harm or injustice. We need to expand our understanding of health justice to consider the environment and do so without reinforcing the epistemic injustice inherent in the field of bioethics. This paper considers what work in philosophy related to the environment should be applied to help build that understanding and develops ideas about the healthcare sector's responsibilities of justice to the environment. It first introduces the dominant multivalent environmental and ecological justice (EJ) concept in philosophy and each of its dimensions: distribution, participation, recognition and well-being. It then shows why applying that conception alone to broaden our understanding of health justice will reinforce epistemic injustice within bioethics. Drawing on EJ literature from the global South, the paper demonstrates that different ontological and experiential starting points identify additional EJ dimensions-power and harmony-and give rise to a nuanced understanding of the recognition dimension relative to the dominant EJ conception. The paper concludes by applying them to articulate healthcare sector responsibilities of justice to the environment, demonstrating they ground responsibilities beyond reducing its carbon emissions.

Where is knowledge from the global South? An account of epistemic justice for a global bioethics.

The silencing of the epistemologies, theories, principles, values, concepts and experiences of the global South constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic and endangers the credibility of the entire field. As a first step towards reorienting the field, this paper offers a comprehensive account of epistemic justice for global health ethics. We first introduce several different conceptions of justice and decolonisation in relation to knowledge, purposefully drawing on work emanating from the global South as well as the global North. We then apply those conceptions to the global health ethics context to generate a tripartite account of the layers of epistemic justice in the field: who is producing ethics knowledge; what theories and concepts are being applied to produce ethics knowledge; and whose voices are sought, recorded and used to generate ethics knowledge. These layers reflect that the field spans conceptual and empirical research. We conclude by proposing that, going forward, three avenues are key to achieve greater epistemic justice at each layer and to help decolonise global health ethics: namely, understanding the problem, dialogue and structural change.

A multidimensional account of social justice for global health research.

A transformation of global health research is urgently needed if it is to eliminate long-standing structural inequities within the field and help reduce global health disparities. Ethics has a key role to play in fostering such a transformation: it can help identify what the transformation should entail. Yet, ethics scholarship linking global health research to greater equity and social justice has limited authority and capacity to do so for two related reasons: it largely fails to apply theories and concepts of justice from the global South and it says little about whether or how to address the coloniality and epistemic injustices inherent within global health research. This paper develops a multidimensional social justice lens using social justice and decolonial theory from the global North and global South. This lens identifies five core dimensions of social justice: power, recognition, harmony, inclusion, and well-being. This paper then applies the multidimensional lens to the global health research context. For each dimension of social justice, several key ways to transform global health research are identified and described. They include shifting control of global health research funding, education, conduct, and publishing away from the global North and making knowledge from the global South visible and valued. To conclude, potential objections are considered.

How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community.

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.

Sustainable global health practice: An ethical imperative?

We are in the midst of a crisis of climate change and environmental degradation that will only get worse, unless significant changes are rapidly made. Globally, the healthcare sector causes a large share of our total environmental footprint: 4.4% of greenhouse gases. Sustainable healthcare has emerged as a way for healthcare sectors in high-income countries to help mitigate climate change by reducing their emissions. Whether global health should be sustainable and what ethical grounds might exist to support such a claim are not questions that have been investigated. The paper argues that global health practice-the delivery of health services to underserved populations in resource-poor areas of the world-should be sustainable as a matter of climate justice and solidarity. Reducing climate change-related risks and harms for the vulnerable is integral to the mission of global health and thus it is necessary to consider the climate impact of its practice. The field has a duty to provide sustainable health services that are responsive to climate change-related changes in the local burden of disease and to build sustainable health system infrastructure. Specific responsibilities for global health funders, managers, and implementers to uphold the duty are proposed. To conclude, the paper considers what limits might be placed on the duty to deliver sustainable global healthcare.

Towards equitable genomics governance in Africa: Guiding principles from theories of global health governance and the African moral theory of Ubuntu.

The post-genomics era promises a revolution characterized by precision medicine and the integration of genomics into almost every area of biomedical research. At the same time, there are concerns that if care is not taken, the genomics revolution may widen global inequities in science and health. In Africa, these concerns are primarily linked to the underrepresentation of African populations in genomics research, limited genomics research capacity in Africa and associated macro-level justice issues such as benefit sharing, inequitable international research collaborations, and the contribution of genomics to the health and research priorities of Africa. Addressing these concerns requires an in-depth reflection on how the ideals of global justice and equity may be advanced in genomics research. To contribute to the limited but growing scholarship on global genomics equity, especially in the African context, we performed a conceptual analysis of three accounts of justice and governance namely, Ubuntu, shared health governance and global governance of health, with the aim of identifying principles that could inform genomics governance in Africa. We used a convergence approach in the conceptual analysis, resulting in the identification of nine principles namely: solidarity, furthering the ideals of health justice, reciprocity, shared decision-making, shared resources, shared responsibility, mutual trust, transparency, and mutual collective accountability. Examples of how the principles may be applied are provided. We recommend that these principles should form the foundation of any mechanism that seeks to systematically advance justice, fairness and equity in genomics research in Africa and more broadly, global health and science equity.

What Should Engagement in Health Research Look Like? Perspectives from People with Lived Experience, Members of the Public, and Engagement Managers.

Engagement in health research is increasingly practised worldwide. Yet many questions remain under debate in the ethics field about its contribution to health research and these debates have largely not been informed by those who have been engaged in health research. This paper addresses the following key questions: what should the ethical goals of engagement in health research be and how should it be performed? Qualitative data were generated by interviewing 22 people with lived experience, members of the public, and engagement managers about power sharing in health research. Thematic analysis of study data identified the following five themes: the value of engagement in research, ideal engagement, tokenistic engagement, terms to describe those engaged, and engagement roles in research. The paper presents that data and then considers what insights it offers for what engagement should look like-its ethical goals and approach-according to those being engaged.

Anticipated impacts of voluntary assisted dying legislation on nursing practice.

BACKGROUND: The Voluntary Assisted Dying Act 2017 passed into law in Victoria, Australia, on the 29 November 2017. Internationally, nurses have been shown to be intimately involved in patient care throughout the voluntary assisted dying process. However, there is a paucity of research exploring Australian nurses' perspectives on voluntary assisted dying and, in particular, how Victorian nurses anticipate the implementation of this ethically controversial legislation will impact their professional lives. OBJECTIVES: To explore Victorian nurses' expectations of the ethical and practical impacts the voluntary assisted dying legislation will have on their professional lives. RESEARCH DESIGN: This qualitative study analysed nurses' free text responses collected as part of a larger mixed methods online survey investigating staff views on the Voluntary Assisted Dying Act. Data were collected during the period between the passing of the voluntary assisted dying legislation and the start date and were analysed using inductive content analysis. PARTICIPANTS AND RESEARCH CONTEXT: Free text survey responses were analysed from 1873 nurses employed across seven Victorian health services located in both metropolitan and regional areas of the state. ETHICAL CONSIDERATIONS: The study obtained research ethics approval and all participants were informed of the voluntary and anonymous nature of their participation. FINDINGS: This study identified three broad areas of Victorian nurses' professional lives that they expected to be impacted by the implementation of voluntary assisted dying: professional identity, career development and workplace relationships. CONCLUSION: Participants anticipate diverse and nursing-specific impacts of the implementation of voluntary assisted dying in Victoria. Their insights can inform health services in jurisdictions considering or already implementing voluntary assisted dying, to develop policies, procedures and staff training programmes that safeguard the well-being and legal rights of their nursing staff.

Sharing power in global health research: an ethical toolkit for designing priority-setting processes that meaningfully include communities.

To promote social justice and equity, global health research should meaningfully engage communities throughout projects: from setting agendas onwards. But communities, especially those that are considered disadvantaged or marginalised, rarely have a say in the priorities of the research projects that aim to help them. So far, there remains limited ethical guidance and resources on how to share power with communities in health research priority-setting. This paper presents an "ethical toolkit" for academic researchers and their community partners to use to design priority-setting processes that meaningfully include the communities impacted by their projects. An empirical reflective equilibrium approach was employed to develop the toolkit. Conceptual work articulated ethical considerations related to sharing power in g0l0o0bal health research priority-setting, developed guidance on how to address them, and created an initial version of the toolkit. Empirical work (51 in-depth interviews, 1 focus group, 2 case studies in India and the Philippines) conducted in 2018 and 2019 then tested those findings against information from global health research practice. The final ethical toolkit is a reflective project planning aid. It consists of 4 worksheets (Worksheet 1- Selecting Partners; Worksheet 2- Deciding to Partner; Worksheet 3- Deciding to Engage with the Wider Community; Worksheet 4- Designing Priority-setting) and a Companion Document detailing how to use them. Reflecting on and discussing the questions in Worksheets 1 to 4 before priority-setting will help deliver priority-setting processes that share power with communities and projects with research topics and questions that more accurately reflect their healthcare and system needs.

Mapping experiences and perspectives of equity in international health collaborations: a scoping review.

BACKGROUND: Whilst global health research often involves international collaborations, achieving or promoting equity within collaborations remains a key challenge, despite established conceptual approaches and the development of frameworks and guidelines to promote equity. There have also been several empirical studies documenting researchers' experiences of inequity and views on what is required to advance equity in global health collaborations. While these empirical studies provide critical insights, there has been no attempt to systematically synthetize what constitutes equity and how it can be achieved. To address this gap, we conducted a scoping review of qualitative studies, opinion and editorial pieces about what equity is and how it can be promoted in international collaborations. METHODS: We conducted a scoping review to explore domains of equity in international health collaborations. This review included qualitative studies and opinion pieces or editorial pieces on equity in international health collaborations. We mapped the data and identified common themes using a thematic analysis approach. RESULTS: This initial search retrieved a total of 7611 papers after removing duplicates. A total of 11 papers were included in this review, 10 empirical studies and 1 editorial piece. We conducted our search between October - November 2019. We identified 10 key domains which are important for promoting equity in international collaborations: funding; capacity building; authorship; sample ownership and export; trust; research agreement; acknowledging inequality; recognition and communication. DISCUSSION: Our findings suggest that for international collaborations to be considered more equitable, it must at least consider the 10 domains we highlighted. The 10 domains map onto five key aspects of social justice theory, namely avoiding unequal power relations like subordination, group recognition and affirmation, promoting the well-being of all, inclusion in decision-making and ensuring self-development.

Support for and willingness to be involved in voluntary assisted dying: a multisite, cross-sectional survey study of clinicians in Victoria, Australia.

BACKGROUND: In the Australian state of Victoria, specialist doctors are central to the operation of voluntary assisted dying (VAD). However, a broad range of clinicians may be involved in the care of patients requesting or using VAD. AIMS: To describe levels of support for and willingness to be involved in VAD and consider factors associated with clinician support for the VAD legislation and physicians' willingness to provide VAD in practice. METHODS: A multisite, cross-sectional survey of clinicians in seven Victorian hospitals. All clinicians were invited to complete an online survey measuring demographic characteristics, awareness of and support for the VAD legislation, willingness to participate in VAD related activities and reasons for willingness or unwillingness to participate in VAD. RESULTS: Of 5690 who opened the survey, 5159 (90.1%) were included in the final sample and 73% (n = 3768) supported the VAD legislation. The strongest predictor of support for the VAD legislation was clinical role. Forty percent (n = 238) of medical specialists indicated they would be willing to participate in either the VAD consulting or coordinating role. Doctors did not differ in willingness between high impact (44%) and low impact specialty (41%); however, doctors specialising in palliative care or geriatric medicine were significantly less willing to participate (27%). CONCLUSION: Approximately 73% of surveyed staff supported Victoria's VAD legislation. However, only a minority of medical specialists reported willingness to participate in VAD, suggesting potential access issues for patients requesting VAD in accordance with the legal requirements in Victoria.

Achieving inclusive research priority-setting: what do people with lived experience and the public think is essential?

BACKGROUND: Engagement 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. METHODS: An exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia. RESULTS: Three 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. CONCLUSIONS: Based 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.

Equitable data sharing in epidemics and pandemics.

BACKGROUND: Rapid data sharing can maximize the utility of data. In epidemics and pandemics like Zika, Ebola, and COVID-19, the case for such practices seems especially urgent and warranted. Yet rapidly sharing data widely has previously generated significant concerns related to equity. The continued lack of understanding and guidance on equitable data sharing raises the following questions: Should data sharing in epidemics and pandemics primarily advance utility, or should it advance equity as well? If so, what norms comprise equitable data sharing in epidemics and pandemics? Do these norms address the equity-related concerns raised by researchers, data providers, and other stakeholders? What tensions must be balanced between equity and other values? METHODS: To explore these questions, we undertook a systematic scoping review of the literature on data sharing in epidemics and pandemics and thematically analyzed identified literature for its discussion of ethical values, norms, concerns, and tensions, with a particular (but not exclusive) emphasis on equity. We wanted to both understand how equity in data sharing is being conceptualized and draw out other important values and norms for data sharing in epidemics and pandemics. RESULTS: We found that values of utility, equity, solidarity, and reciprocity were described, and we report their associated norms, including researcher recognition; rapid, real-time sharing; capacity development; and fair benefits to data generators, data providers, and source countries. The value of utility and its associated norms were discussed substantially more than others. Tensions between utility norms (e.g., rapid, real-time sharing) and equity norms (e.g., researcher recognition, equitable access) were raised. CONCLUSIONS: This study found support for equity being advanced by data sharing in epidemics and pandemics. However, norms for equitable data sharing in epidemics and pandemics require further development, particularly in relation to power sharing and participatory approaches prioritizing inclusion. Addressing structural inequities in the wider global health landscape is also needed to achieve equitable data sharing in epidemics and pandemics.

Genomics governance: advancing justice, fairness and equity through the lens of the African communitarian ethic of Ubuntu.

There is growing interest for a communitarian approach to the governance of genomics, and for such governance to be grounded in principles of justice, equity and solidarity. However, there is a near absence of conceptual studies on how communitarian-based principles, or values, may inform, support or guide the governance of genomics research. Given that solidarity is a key principle in Ubuntu, an African communitarian ethic and theory of justice, there is emerging interest about the extent to which Ubuntu could offer guidance for the governance of genomics research in Africa. To this effect, we undertook a conceptual analysis of Ubuntu with the goal of identifying principles that could inform equity-oriented governance of genomics research. Solidarity, reciprocity, open sharing, accountability, mutual trust, deliberative decision-making and inclusivity were identified as core principles that speak directly to the different macro-level ethical issues in genomics research in Africa such as: the exploitation of study populations and African researchers, equitable access and use of genomics data, benefit sharing, the possibility of genomics to widen global health inequities and the fair distribution of resources such as intellectual property and patents. We use the identified the principles to develop ethical guidance for genomics governance in Africa.

Community organisation-researcher partnerships: what concerns arise for community organisations and how can they be mitigated?

Universities and research funders' growing emphasis on community partnerships, engagement and outreach has seen a rise in collaborations between university researchers and staff of community organisations (COs) on research projects. What ethical issues and concerns are experienced as part of these collaborations has largely not been described, particularly from the perspective of COs As part of a recent, broader qualitative study, several concerns arising during health research collaborations between COs and university researchers were captured during thematic analysis. The concerns were described in semistructured interviews by four staff of three COs that work with marginalised groups (ie, migrants and refugees, women who experience domestic violence, indigenous populations) in a high-income country. In this paper, the three concerns are taken as the starting point for ethical analysis. Interview data are first used to illustrate the three concerns: being restricted to a recruitment role in studies, reinforcement of stereotypes of marginalised groups and weakening CO-community relationships. The paper then explores why the concerns are morally troubling and demonstrates how each concern generates feelings of disrespect, creates harm(s), and/or reflects or reinforces unfairness or injustice. It concludes by proposing three ethical criteria for CO-researcher partnerships: fair division of labour, balancing CO advocacy goals with research goals and balancing CO service goals with research goals. Where researchers and COs discuss how to meet these criteria at the start and during research collaborations, it can potentially help mitigate or prevent the occurrence of the concerns described in this paper.

Solidarity and Community Engagement in Global Health Research.

Community engagement (CE) is gaining prominence in global health research. A number of ethical goals-spanning the instrumental, intrinsic, and transformative-have been ascribed to CE in global health research. This paper draws attention to an additional transformative value that CE is not typically linked to but that seems very relevant: solidarity. Both are concerned with building relationships and connecting parties that are distant from one another. This paper first argues that furthering solidarity should be recognized as another ethical goal for CE in global health research. It contends that, over time, CE can build the bases of solidaristic relationships-moral imagination, recognition, understanding, empathy-between researchers and community members. Applying concepts from existing accounts of solidarity, the paper develops preliminary ideas about who should be engaged and how to advance solidarity. The proposed approach is compared to current CE practice in global health research. Finally, the paper briefly considers how solidaristic CE could affect how global health research is performed.

What constitutes fair shared decision-making in global health research collaborations?

Funders (located primarily in high-income countries) and high-income country researchers have historically dominated decision-making within global health research collaborations: from setting agendas and research design to determining how data are collected and analysed and what happens with findings and outputs. The ethical principle of shared decision-making has been proposed as a way to help address these imbalances within collaborations and to reduce semicolonial and exploitative forms of global health research. It is important to be clear about what shared decision-making means in order to ensure that it is not done in a tokenistic, shallow way. Thus far, the principle's content has not been examined and articulated in detail. This paper aims to start the process of delineating a concept of fair shared decision-making as a minimum standard for global health research. Using two hypothetical case examples, the paper will demonstrate that global health research practice is often inconsistent with ideal shared decision-making. In such instances, it can be difficult to decide whether shared decision-making within collaborations is fair. The paper describes how the two cases do not meet criteria for unfair or non-ideal shared decision-making, despite having potentially morally troubling features. The nuances of these examples of research practice help to generate clearer ideas about how to judge fairness in shared decision-making. The paper concludes by presenting ideas about when soft power can be fairly employed between high-income-country and low- and middle-income-country partners and what fair compromise agreements may look like in shared decision-making.

Developing a toolkit for engagement practice: sharing power with communities in priority-setting for global health research projects.

BACKGROUND: Communities' 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. METHODS: A 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. RESULTS: The 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. CONCLUSIONS: The 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.

Too much safety? Safeguards and equal access in the context of voluntary assisted dying legislation.

BACKGROUND: In June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation. MAIN TEXT: In this paper, we analyse the ethical relationship between legislative "safeguards" and equal access. Drawing primarily on Ruger's model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients. CONCLUSIONS: While safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access.