Suchergebnisse

Community engagement (patient and public involvement) is gaining prominence in health research worldwide. But there remains limited ethical guidance on how to share power with communities in health research priority setting, particularly that which has been informed by the perspectives of those being engaged. This article provides initial evidence about what they think are important ways to share power when setting health research projects' topics and questions. Twenty-two people with lived experience, engagement practitioners, and members of the public who have been engaged in health research in the United Kingdom and Australia were interviewed. Thematic analysis identified 15 key ways to share power, many of which are relational. This study further demonstrates that tensions exist between certain ways of sharing power in health research priority setting. More research is needed to determine how to navigate those tensions.

Community engagement is gaining prominence in global health research. But community members, especially those from groups and communities that are considered disadvantaged and marginalized, rarely have a say in the agendas and priorities of the research projects that aim to help them. This article explores how to achieve their inclusion in priority-setting for global health research projects. A total of 29 in-depth interviews and one focus group were undertaken with researchers, research ethicists, community engagement practitioners, and community-based organization staff. Thematic analysis identified two core dimensions of inclusion—representation and voice—and what is necessary to realize them with marginalized groups and communities in global health research priority-setting. A set of ethical considerations is proposed to assist researchers and their partners design more inclusive priority-setting processes.

The ethics of research involving Aboriginal populations and low and middle-income country populations each developed out of a long history of exploitative research projects and partnerships. Commonalities and differences between the two fields have not yet been examined. This study undertook two independent literature searches for Aboriginal health research ethics and global health research ethics. Content analysis identified shared and differently emphasised ethical principles and concepts between the two fields. Shared ethical concepts like "benefit" and "capacity development" have been developed to guide collaborations in both Aboriginal health research and global health research. However, Aboriginal health research ethics gives much greater prominence to ethical principles that assist in decolonising research practice such as "self-determination", "community-control", and "community ownership". The paper argues that global health research ethics would benefit from giving greater emphasis to these principles to guide research practice, while justice as approached in global health research ethics may inform Aboriginal health research practice. With increasing attention being drawn to the need to decolonise global health research, the lessons Aboriginal health research ethics can offer may be especially timely.

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.

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.

An ethical framework called "research for health justice" provides initial guidance on how to link health systems research in low- and middle-income countries to health equity. To further develop the largely conceptual framework, we tested its guidance against the experience of the Maternal and Neonatal Implementation for Equitable Health Systems (Manifest) project, which was performed in rural Uganda by researchers from Makerere University. We conducted 21 in-depth interviews with investigators and research implementers, directly observed study sites, and reviewed study-related documents. Our analysis identifies where alignment exists between the framework's guidance and the Manifest project, providing initial lessons on how that was achieved. It also identifies where nonalignment occurred and gaps in the framework's guidance. Suggestions are then made for revising and expanding "research for health justice."

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.

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.

Certain product development partnerships (PDPs) recognize that to promote the reduction of global health disparities they must create access to their products and strengthen research capacity in developing countries.

Given the unprecedented scale of digital surveillance in the COVID-19 pandemic, designing and implementing digital technologies in ways that are equitable is critical now and in future epidemics and pandemics. Yet to date there has been very limited consideration about what is necessary to promote their equitable design and implementation. In this study, literature relating to the use of digital surveillance technologies during epidemics and pandemics was collected and thematically analyzed for ethical norms and concerns related to equity and social justice. Eleven norms are reported, including procedural fairness and inclusive approaches to design and implementation, designing to rectify or avoid exacerbating inequities, and fair access. Identified concerns relate to digital divides, stigma and discrimination, disparate risk of harm, and unfair design processes. We conclude by considering what dimensions of social justice the norms promote and whether identified concerns can be addressed by building the identified norms into technology design and implementation practice.