Making research ethics work for global health: towards a more agile and collaborative approach.

In this reflective essay, we seek to engage in a constructive dialogue with scholars across medicine, public health and anthropology on research ethics practices. Drawing on anthropological research and ethical dilemmas that our colleagues and we encountered as medical anthropologists, we reflect on presumed and institutionalised 'best' practices such as mandatory written informed consent, and problematise how they are implemented in interdisciplinary global health research projects. We demonstrate that mandatory, individualised, written, informed consent may be unsuitable in many contexts and also identify reasons why tensions between professionals in interdisciplinary teams may arise when decisions about ethics procedures are taken. We propose alternatives to written informed consent that acknowledge research governance requirements and contextual realities and leave more room for ethnographic approaches. Beyond informed consent, we also explore the situatedness of ethical practices when working in contexts where decision-making around health is clearly a shared concern. We use vignettes based on our own and colleagues' experiences to illustrate our arguments, using the collective 'we' instead of 'I' in our vignettes to protect our research participants, partners and interlocutors. We propose a decolonial, plural and vernacular approach to informed consent specifically, and research ethics more broadly. We contend that ethics procedures and frameworks need to become more agile, decolonial, pluralised and vernacularised to enable achieving congruence between communities' ideas of social justice and institutional ethics. We argue that global health research can benefit from anthropology's engagement with situated ethics and consent that is relational, negotiated and processual; and accountability that is not only bureaucratic but also constructive. In doing so, we hope to broaden ethical praxis so that the best outcomes that are also just, fair and equitable can be achieved for all stakeholders.

When accountability meets power: realizing sexual and reproductive health and rights.

This paper addresses a critical concern in realizing sexual and reproductive health and rights through policies and programs - the relationship between power and accountability. We examine accountability strategies for sexual and reproductive health and rights through the lens of power so that we might better understand and assess their actual working. Power often derives from deep structural inequalities, but also seeps into norms and beliefs, into what we 'know' as truth, and what we believe about the world and about ourselves within it. Power legitimizes hierarchy and authority, and manufactures consent. Its capillary action causes it to spread into every corner and social extremity, but also sets up the possibility of challenge and contestation.Using illustrative examples, we show that in some contexts accountability strategies may confront and transform adverse power relationships. In other contexts, power relations may be more resistant to change, giving rise to contestation, accommodation, negotiation or even subversion of the goals of accountability strategies. This raises an important question about measurement. How is one to assess the achievements of accountability strategies, given the shifting sands on which they are implemented?We argue that power-focused realist evaluations are needed that address four sets of questions about: i) the dimensions and sources of power that an accountability strategy confronts; ii) how power is built into the artefacts of the strategy - its objectives, rules, procedures, financing methods inter alia; iii) what incentives, disincentives and norms for behavior are set up by the interplay of the above; and iv) their consequences for the outcomes of the accountability strategy. We illustrate this approach through examples of performance, social and legal accountability strategies.

The shifting axes of marginalities: the politics of identities shaping women's experiences during childbirth in Northeast India.

Institutional births in India, including the north eastern state of Assam, have increased steeply in the last decade such that 71% of all births now occur in facilities. Most analyses of disrespect and abuse during childbirth have largely framed the problem within a binary that juxtaposes all users of services in one category, subordinate to institutions and institutional actors. This commentary explores whether a different analysis is possible within a relational context where citizenship itself is graded, and not all marginal groups experience either the same form or the same intensity of mistreatment. Employing a historical lens including examining relations between non-elite groups, current discriminatory state policies and practices, and deepening conflicts over scarce resources, this commentary presents a more localised and granular understanding of how disrespect and abuse may manifest in institutional births in Assam. Experiences of disrespect and abuse during childbirth are mediated by axes of marginalities that are dynamic and non-isomorphic, shaped by state policies, the everyday practices of the citizens, the differential and unequal relations between the state and multiple marginal groups of citizens, and between citizens themselves. Reframing marginality in this way may lend itself to identifying sources of inequities that emanate from both within and outside of health systems, allowing for more sophisticated explorations of disrespect and abuse. This may help improve health systems to ensure that experience of childbirth is more humane, safe and respectful, independent of women's social identities and their locations in the larger political economy.

'Safe', yet violent? Women's experiences with obstetric violence during hospital births in rural Northeast India.

The majority of maternal health interventions in India focus on increasing institutional deliveries to reduce maternal mortality, typically by incentivising village health workers to register births and making conditional cash transfers to mothers for hospital births. Based on over 15 months of ethnographically informed fieldwork conducted between 2015 and 2017 in rural Assam, the Indian state with the highest recorded rate of maternal deaths, we find that while there has been an expansion in institutional deliveries, the experience of childbirth in government facilities is characterised by obstetric violence. Poor and indigenous women who disproportionately use state facilities report both tangible and symbolic violence including iatrogenic procedures such as episiotomies, in some instances done without anaesthesia, improper pelvic examinations, beating and verbal abuse during labour, with sometimes the shouting directed at accompanying relatives. While the expansion of institutional deliveries and access to emergency obstetric care is likely to reduce maternal mortality, in the absence of humane care during labour, institutional deliveries will continue to be characterised by the paradox of "safe" births (defined as simply reducing maternal deaths) and the deployment of violent practices during labour, underscoring the unequal and complex relationship between the bodies of the poor and reproductive governance.

'Rakter dosh'--corrupting blood: The challenges of preventing thalassemia in Bengal, India.

Thalassemia is an inherited blood disorder that has been receiving increasing attention in India. However, prevention of thalassemia in India continues to be difficult despite efforts of public health professionals and the government. Using West Bengal as a case study, this paper attempts to unravel some of the barriers to the prevention campaign and the consequent under utilization of the program. Lack of access, low awareness, low-risk perception and poverty are all important proximate constraints; however, one of the greatest barriers to the program is rooted in cultural notions of blood, marriage, identity, personhood and kinship in Bengali society. Blood is so deeply valued in the Bengali kinship system that this genetic mutation is perceived to be corrupting the blood (rakter dosh). Being a thalassemia carrier (i.e., having thalassemia minor) renders an individual unfit as a suitable marriage partner because of beliefs related to purity of blood, its association with the continuity of the lineage, and subsequent transmission of desirable traits to future generations. The risk of non-marriage affects women disproportionately, and parents are not inclined to test their daughters because of the possibility of not being able to marry them off to eligible suitors. The stigma associated with having thalassemia minor (TMI) is a deterrent to the disclosure of thalassemia status as well as to testing. Using anthropological theories and ethnographic methods, this paper focuses on the gendered process by which the diagnosis of a thalassemia carrier 'spoils' identities, thereby creating a disjuncture between the goals of the prevention program and people's need for social conformity, and ultimately between medical desirability and social desirability. The paper also suggests policies for enhancing the utilization of the program. Finally the conclusions from this study have potential applications for public health prevention programs that confront problems of stigma in program acceptability.