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The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. In Sierra Leone, motherhood is being transformed into a moral career for women with sickle cell disorders. This qualitative participatory study, conducted in 2018, involved thirty-six semi-structured interviews with female care-givers and women with sickle cell disorders. Mothers argued that medical models of disease, combined with caring practices, are means to morally manage ideas of ‘spoiled identity’ and rethink the sick role, disability and life-outcomes of a potentially serious condition. Mothers encourage their children with sickle cell to stay in education as a route to access formal employment and careers that will not tax their bodies and ensure reproductive timing. Education and employment are framed temporally to ensure a delay so that girls can develop caring relationships and access motherhood safely. Understanding and encouraging the development of motherhood as a moral career, involving embodied hyper-vigilant caring practices, is valuable for the self-identity of mothers, allowing them to see a future for themselves and their children.

Much of the focus of public health research post-Ebola in Sierra Leone has been on rebuilding the healthcare system. However, very little attention has focused on capacity building in knowledge necessary for (bio)medical research, specifically around emerging opportunistic human pathogens that contribute to the high morbidity and mortality rates in Sierra Leone. In collaboration with academic staff from the University of Makeni, we engaged in a small-scale pilot intervention to strengthen medical parasitology teaching and research. The cultural competencies and ethical expertise provided by Sierra Leonean academics was critical to work in local communities and ensuring consent to undertake research. Yet, at the end of a day of collecting samples, in small pieces of conversation, the staff also explained ethical constraints they experienced taking part in research collaborations. They illustrate that, while on the surface all may seem well with a project, there can be harmful effects in terms of accessibility, ownership, cultural responsiveness and accountability, which should be taken into consideration when establishing networks and collaborations with universities from low-income countries.

This paper begins by giving a description of the relationship between austerity and the neoliberal policy focus on work in the UK, and how this impacts negatively on disabled people. It examines wh...

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person’s disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The relational concepts of Anna Tsing (2015)- salvage accumulation, entanglement and precarity - were used as an analytical framework to assess the reported experiences. To understand these experiences of those with SCD and employment, it is necessary to apprehend the whole ecology of their bonds to their bodies; their social relationships of kin and family; and their wider social relations to communities. Paid employment breaks bonds crucial to those living with SCD. First, employers can only extract sufficient productive value from workers if they disregard the necessary self-care of a precarious body. Secondly, reproducing labour though child-care, housework and care work is a taken-for-granted salvage central to capitalism. Thirdly, voluntary and community work are salvaged for free by employers towards their accumulation of profits. People with SCD find bond-making activities that create the commons life-affirming, thereby reconfiguring our understanding of connections between disability and work. Tsing, AL (2015) The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins Princeton, NJ: Princeton University Press.

Most research on sickle cell disorders has tended to be gender-blind. This qualitative study undertaken in 2018, explores if and how sickle cell disorders become gendered in Sierra Leone through the analytical framework of a feminist ethics of care. It argues that women have to navigate moral blame when they have children with the condition. At the same time women refashion moral boundaries so that gendered norms around childhood and parenting for such children become suspended, in favour of creation of careful spaces. Parental fears of physical and sexual violence mean that gendered sexual norms are enforced for teenage boys as they are encouraged into early adulthood. In contrast, girls are kept in enforced ignorance about the consequences of sickle cell for reproduction and are encouraged to delay motherhood. This is because, as women relate, relationships and giving birth are fraught with embodied dangers and risks of violence., Highlights • Using a feminist ethics of care analysis, examines how sickle cell disorders become gendered. • Professionals act as caring pioneers to stop mothers being blamed for children with the condition. • As children, gendered norms for girls and boys are suspended in favour of careful spaces. • Parental fears of effects of violence mean girls and boys socialised differently into adulthood. • Policy neglect and male standard in practice leads to lack of reproductive justice and violence.

In this chapter, I argue that we need to reconceptualise how we think of ethics in public health to address disability in Africa. I begin by investigating what an African morality and ethics would look like, why it is linked to conceptions of personhood and kinship, and how that links into the multiple local and global understandings of disability. Secondly, I note how African ontologies and epistemologies have been linked to ‘cultural’ or ‘traditional’ understandings of disability and nuance those arguments in terms of understanding ‘’the good’ or social wellbeing. Thirdly, I argue that neither ethics nor disability have been integrated into public health approaches in many African contexts. Lastly, I note some of the future challenges that the continent will face and why reconceptualising ethics, disability and public health should be a priority.

The hemoglobin A1c (A1C) test is increasingly used as a diagnostic and screening test for type 2 diabetes. With an estimated 8.8% of adults globally having diabetes, effective screening, diagnosis, and monitoring is of major global importance (1). The biomarker of A1C refers to glycated hemoglobin A molecules and has gained prominence in the diagnosis of type 2 diabetes because it offers certain advantages over plasma glucose testing regimens (2). It is well established that some of the hundreds of hemoglobin (Hb) variants, including the clinically relevant HbS, HbE, HbC, and HbD (3,4), may interfere with the validity of A1C results. Thus, testing strategies and tools employing A1C should ideally identify variants when they are present. Incidental findings of Hb variants present several ethical challenges for laboratories, health care providers, patients, and their families. These challenges have, to date, received little attention. This article reviews some of the advantages of detecting sickle cell trait, identified by the routine A1C test, but also several related ethical dilemmas. We explore issues such as whether informed consent is necessary, how the results should be communicated, how patients may be affected by knowing their carrier status, the timing of communications, complications caused by partial results, and the circumstance of being a “healthy carrier” while potentially experiencing symptoms. A multidisciplinary team and a patient diagnosed as a sickle cell carrier through the A1C test worked together to explore these ethical challenges to produce this article. We hope it will instigate discussion around the issues presented and ultimately lead to the development of appropriate international guidelines. Sickle Hb (HbS) is one of the most common Hb variants. Worldwide, an estimated 300 million people have sickle cell trait (SCT) and ∼4.4 million people have sickle cell disease (SCD), the overall name for a group …

The file attached to this record is the author's final peer reviewed version. Capacity building in Sierra Leone (West Africa) is critical to prevent potential future outbreaks similar to the 2013-16 Ebola outbreak that had devastating effects for the country and its poorly developed healthcare system. De Montfort University (DMU) in the United Kingdom (UK), in collaboration with parasitologists from the Spanish Universities of San Pablo CEU and Miguel Hernández de Elche, is leading a project to build the teaching and research capabilities of medical parasitology at the University of Makeni (UniMak, Sierra Leone). This project has two objectives: a) to introduce and enhance the teaching of medical parasitology, both theoretical and practical; and b) to implement and develop parasitology research related to important emerging human parasites such as Cryptosporidium spp. due to their public health significance. Two UniMak academics, hired to help initiate and implement the research part of the project, shared their culturally sensitive public health expertise to broker parasitology research in communities and perform a comprehensive environmental monitoring study for the detection of different emerging human parasites. The presence of targeted parasites are being studied microscopically using different staining techniques, which in turn have allowed UniMak’s academics to learn these techniques to develop new practicals in parasitology. To train UniMak’s academics and develop both parts of our project, a DMU researcher visited UniMak for two weeks in April 2019 and provided a voluntary short training course in basic parasitology, which is currently not taught in any of their programmes, and was attended by 31 students. These sessions covered basic introduction to medical parasitology and life-cycle, pathogenesis, detection, treatment and prevention of: a) coccidian parasites (Cryptosporidium, Cyclospora and Cystoisospora); b) Giardia intestinalis, Entamoeba and free-living amoebas; c) malaria and d) microsporidia. A theoretical session on common staining techniques was also provided. To facilitate the teaching and learning of these parasites, the novel resource DMU e-Parasitology was used, a package developed by the above participating universities and biomedical scientists from the UK National Health Service (NHS): http://parasitology.dmu.ac.uk/ index.htm. Following the two weeks of training, UniMak’s academics performed different curriculum modifications to the undergraduate programme ‘Public Health: Medical Laboratory Sciences’, which includes the introduction of new practicals in parasitology and changes to enhance the content of medical parasitology that will be subjected to examination. Thus, a new voluntary practical on Kinyoun stain for the detection of coccidian parasites was introduced in the final year module of ‘Medical Bacteriology and Parasitology’; eighteen students in pairs processed faecal samples from pigs provided by the Department of Agriculture and Food Security from a nearby farm. Academics at UniMak used the Kinyoun staining unit (available at http://parasitology.dmu.ac.uk/learn/lab/Kinyoun/story_html5.html; [1]) to deliver this practical. Although our project is at a preliminary stage, it has been shown to be effective in promoting the introduction and establishment of medical parasitology at UniMak and could be viewed as a case-study for other universities in low-income countries to promote the United Nations (UN) Sustainable Development Goals (SDGs) and improve public health understanding of infectious diseases.

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. We introduce the social model of disability by reflecting on its origins and legacy, with particular reference to the work of the Union of the Physically Impaired against Segregation (UPAIS). We argue that there has been a gradual rolling back of the rights and entitlements associated with the social model of disability. Yet no alternative for the social model has been proposed, in response to such threats to disabled people’s human rights. Disabled people need a stronger social model that acts as a means to a society that enables and ensures their rights; the right to live a dignified life, as well as live in an environment that enables people to flourish with disability.