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

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

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

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

How Can Health Systems Research Reach the Worst-Off? A Conceptual Exploration

Background: Health systems research is increasingly being conducted in low and middle-income countries (LMICs). Such research should aim to reduce health disparities between and within countries as a matter of global justice. For such research to do so, ethical guidance that is consistent with egalitarian theories of social justice proposes it ought to (amongst other things) focus on worst-off countries and research populations. Yet who constitutes the worst-off is not well-defined. Methods and Results: By applying existing work on disadvantage from political philosophy, the paper demonstrates that (at least) two options exist for how to define the worst-off upon whom equity-oriented health systems research should focus: those who are worst-off in terms of health or those who are systematically disadvantaged. The paper describes in detail how both concepts can be understood and what metrics can be relied upon to identify worst-off countries and research populations at the sub-national level (groups, communities). To demonstrate how each can be used, the paper considers two real-world cases of health systems research and whether their choice of country (Uganda, India) and research population in 2011 would have been classified as amongst the worst-off according to the proposed concepts. Conclusions: The two proposed concepts can classify different countries and sub-national populations as worst-off. It is recommended that health researchers (or other actors) should use the concept that best reflects their moral commitments—namely, to perform research focused on reducing health inequalities or systematic disadvantage more broadly. If addressing the latter, it is recommended that they rely on the multidimensional poverty approach rather than the income approach to identify worst-off populations

Ethical diversity and practical uncertainty : A qualitative interview study of clinicians’ experiences in the implementation period prior to voluntary assisted dying becoming available in their hospital in Victoria, Australia

In the Australian state of Victoria, legislation allowing voluntary assisted dying (VAD) passed through parliament in November 2017. There was then an eighteen-month period before the start date for patient access to VAD, referred to as the “implementation period.” The implementation period was intended to allow time for the relevant government department and affected organizations to develop processes before the Act came into effect in June 2019. This qualitative interview study investigates the perspectives of a multidisciplinary sample of twelve clinicians from a single metropolitan hospital during this implementation period. Maximum variation sampling was utilized to ensure breadth across discipline (medical, nursing, allied health), speciality, and stated level of support for the VAD legislation. Four key themes were identified from the interview data: preparing for the unknown, ethical diversity within the organization, building a respectful culture, and concerns about the inability of the legislated approach to capture clinical nuances. Overall, these clinicians’ workplace experiences during the implementation period were shaped by the ethical diversity within their organization and a sense of uncertainty about how the VAD legislation would integrate with the practical realities of their clinical setting. The concept of “ethical diversity” could be a useful one for supporting staff in an organization during a VAD implementation period

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

What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders' perspectives

Introduction Despite growing consensus on the need for equitable data sharing, there has been very limited discussion about what this should entail in practice. As a matter of procedural fairness and epistemic justice, the perspectives of low-income and middle-income country (LMIC) stakeholders must inform concepts of equitable health research data sharing. This paper investigates published perspectives in relation to how equitable data sharing in global health research should be understood. Methods We undertook a scoping review (2015 onwards) of the literature on LMIC stakeholders’ experiences and perspectives of data sharing in global health research and thematically analysed the 26 articles included in the review. Results We report LMIC stakeholders’ published views on how current data sharing mandates may exacerbate inequities, what structural changes are required in order to create an environment conducive to equitable data sharing and what should comprise equitable data sharing in global health research. Conclusions In light of our findings, we conclude that data sharing under existing mandates to share data (with minimal restrictions) risks perpetuating a neocolonial dynamic. To achieve equitable data sharing, adopting best practices in data sharing is necessary but insufficient. Structural inequalities in global health research must also be addressed. It is thus imperative that the structural changes needed to ensure equitable data sharing are incorporated into the broader dialogue on global health research

How is inclusiveness in health systems research priority-setting affected when community organizations lead the process?

Community engagement is gaining prominence in health research. But communities rarely have a say in the agendas or conduct of the very health research projects that aim to help them. One way thought to achieve greater inclusion for communities throughout health research projects, including during priority-setting, is for researchers to partner with community organizations (COs). This paper provides initial empirical evidence as to the complexities such partnerships bring to priority-setting practice. Case study research was undertaken on a three-stage CO-led priority-setting process for health systems research. The CO was the Zilla Budakattu Girijana Abhivrudhhi Sangha, a district-level community development organization representing the Soliga people in Karnataka, India. Data on the priority-setting process were collected in 2018 and 2019 through in-depth interviews with researchers, Sangha leaders and field investigators from the Soliga community who collected data as part of the priority-setting process. Direct observation and document collection were also performed, and data from all three sources were thematically analysed. The case study demonstrates that, when COs lead health research priority-setting, their strengths and weaknesses in terms of representation and voice will affect inclusion at each stage of the priority-setting process. CO strengths can deepen inclusion by the CO and its wider community. CO weaknesses can create limitations for inclusion if not mitigated, exacerbating or reinforcing the very hierarchies that impede the achievement of improved health outcomes, e.g. exclusion of women in decision-making processes related to their health. Based on these findings, recommendations are made to support the achievement of inclusive CO-led health research priority-setting processes

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