Paper short abstract:

Genetic epidemiology is making headway in China. Analysing the way genetic epidemiological research in China Medical City is presented by its leaders using ‘strategic scaling’, I show how socio-historical context of epidemiology and state concerns with biosecurity delimit the way scientists argue their case.

Paper long abstract:

With the development of biobanks, genetic and environmental measurements are routinely translated in terms of public health risk, rendering all human behavior as potentially determined by genetic and epigenetic processes and environmental factors. Not only does it continue and renew the medicalization of society, it also provides authorities with tools for monitoring public health and maintaining biosecurity.

In European societies, discourses on bioethics and risk have increasingly led individuals to monitor their health conditions. In China, however, where investment in epidemiology and biobanks has grown, unequal access to healthcare and health education has raised questions about how in Chinese society epidemiological information is collected, and which communities benefit from its activities.

Analyzing the way genetic epidemiological research in China Medical City is presented by its leaders reveals how socio-historical context of epidemiology and state concerns with biosecurity delimit the way scientists argue their case. Although it is known that nation-state policy plays an important role in scientific discourse in China, I show how scientists use what I call strategic scaling to zoom in on particular relations between communities and research. Defining their research in terms of units, standards, and perspectives pre-modeled by both state developments and the international science community, these relations define the stakes, costs and benefits of their research.

Paper short abstract:

This research examines a NGO focused on bone marrow transplant donor recruitment in South Africa, and how their instantiations of promise in policy and practice marshal a combination of race and class, immunogenetic compatibility, post-Apartheid political exigencies, and biomedical technology.

Paper long abstract:

South Africa's constitution promises all citizens access to health care. Actual service provision, however, remains unequal along lines of class and race. The uneven distribution of health care resources is evident in the case of expensive, clinically risky treatments that benefit a small number of patients. Nonetheless, advocates for such procedures, particularly privately funded NGO's, thrive and garner public attention. How are they able to do so in the face of the unfulfilled promises of post-Apartheid racial equality and universal health care access? To grapple with this question, I focus on the case of bone marrow transplantation, a treatment for leukemia and blood disorders requiring highly specific immunogenetic compatibility. I conducted fieldwork with the Sunflower Fund, a NGO with the mission to recruit bone marrow transplant donors for South Africa's donor registry. Despite the still-limited provision of bone marrow transplants, the Sunflower Fund leverages instantiations of promise to make an appeal for their work. I focus on three examples:

1) Promises of middle class aspiration and greater wealth/health through post-apartheid economic policies and practices that validate corporate interests and privatization.

2) Hopes of racial diversity and class values among other factors as tools for calculating biomedical risk, immunogenetic matching and bio-civic inclusion/exclusion.

3) Historic and ongoing investment in bone marrow transplantation as a procedure endowed with salvific promise.

Through an examination of promise in this context, I demonstrate the extent to which the rhetoric and practices of aspiration and hope often supersede the scrutiny of actualized outcomes and critical reform.

Paper short abstract:

This paper engages with the global assemblage framing racialized recessive gene disorders as a ‘global health crisis’, and the ramifications of policies prioritising the use of genomics/carrier screening for ‘prevention’ to contain the spread of ‘deleterious genes’ into the European populations

Paper long abstract:

This paper engages critically with the global assemblage framing sickle cell and thalassaemia (recessive gene disorders) as a 'global health crisis' that can be read in several registers of competing 'truth claims' (Shiffman, 2009). A disproportionate share of incidence and premature mortality is experienced in some of the poorest communities, especially across sub-Saharan Africa, India, Brazil and the Middle East, with poorly regulated health markets and access to care. Despite cheaply available diagnosis and treatment in most countries across South, the neo-liberal logic prioritises prevention over treatment, to reduce long term costs of care. Hence, the promise of genomics in the South lies in at-risk couples being offered the choice of preventing the birth of affected children' rather than gene therapy and stem cell research promising a cure within the wider 'political economy of hope' (Novas, 2007). Further, prevention is considered directly beneficial to the host countries in the North, controlling the introduction of the 'deleterious' genes into the European populations, given the 'widespread' immigration from South to the North. The metaphors of the immigrant, travel and contagion characterise these (racialized) disorders as crosscutting the traditional binary between communicable 'diseases that travel' and those that don't move but can 'spread' and be perceived as contagious. Equally, the logic of prevention silences the racialization of ethnic/social groups embodying these traits within specific national contexts (Thomas and Clarke, 2013), impacting on how their health and reproductive rights might be governed in poorly regulated systems in the South (Sleeboom-Faulkner, 2010).

Paper short abstract:

Focusing on a cancer syndrome known as Li-fraumeni in an emerging field of Brazilian cancer genetics, this paper examines the growing interest in rare genetic disease as part of a globalizing discourse of genomic health care.

Paper long abstract:

An interest in 'rare' genetic disease has long been part of medical genetic research, seen as an opportunity to identify the molecular pathways of 'neglected diseases'. Within the context of a globalizing agenda for genetic research where 'global health' is increasingly seen as necessarily informed by and having to account for genomics, the focus on rare genetic diseases is becoming prominent. As expanding epidemiological data reveal the variable frequency of genetic markers across diverse populations there is a re-signification of the relevance of rare genetic diseases linked also to expanding markets and purported beneficiaries.

Focusing on a cancer syndrome known as Li-fraumeni in an emerging field of Brazilian cancer genetics, this paper examines the growing interest in rare genetic disease as part of a globalizing discourse of genomic health care. Drawing from ethnographic research in the southern region of Brazil in cancer genetic clinics it reflects on how this cancer syndrome is being constituted at the interface with particular transnational research agendas. It examines how the identification of a specific genetic marker associated with the syndrome in the south of Brazil, R337h, is used as a resource in addressing 'neglected' clinical needs and to raise questions about the very parameters of how rare diseases are defined and addressed. In this way it seeks to show how an emerging focus on genomics in the global health is characterized by a multiplicity of discourses where both the global and the local participate in constituting its meaning, relevance and scope.

Paper short abstract:

This presentation discusses the limits and possibilities of genomics becoming global by analysing narratives of scientists and Duchenne Muscular Dystrophy patients on genetic therapies in Japan. I ask: to what extent do ‘local’ socio-cultural conditions affect practices of genetic therapies?

Paper long abstract:

Globally, genomics research is expected to enhance the health of patients with serious and intractable diseases, including Duchenne Muscular Dystrophy (DMD). But to what extent do ‘local’ socio-cultural conditions affect the application of genome therapies?

Since the 1990s, number of clinical trials for DMD have been organized, among them a genetic therapy, exon skipping, and genetic testing for DMD has gained much attention. In both cases, Japan’s ‘locality’ is of relevance. On the one hand, Japanese scientists use the ‘Japanese genome’ to develop genetic therapies, as ‘Japanese bodies are unique’.  This is one reason that Japanese scientists initiate their own studies.

On the other hand, field research shows that DMD patients are not enthusiastic about genetic therapies developed in Japan or elsewhere. The dilemma for DMD patients is that even though they might want to be cured, to comply with the scientific research on offer to be cured might mean to go along with a belief in Japanese superior and unique bodies, which forms the basis of eugenics, and is silently alive in scientific practices. Japan’s eugenic history of patients with genetic disorders being sterilized is still felt. This dilemma might keep patients from engaging with genetic therapies.

In my paper I discuss the limits and possibilities of genomics becoming global from the perspective of therapeutic applications.

Paper short abstract:

Understanding global health issues as well as health as a global phenomenon cannot be achieved focussing only in Genetics and Genomics. Biology and biological disorders have to do with developmental processes through which the genome comes into being within complex networks of activation/suppression/modulation organised by the cell. This is the field of Epigenetics and Epigenomics, which may offer a better theoretical and empirical frame when trying to understand the prevalence of some health conditions and ailments that are becoming a repetitive feature of our contemporary globalised world.

Paper long abstract:

As part of a gene-centred hegemonic paradigm as an explanatory of any kind of human affairs and matters, we observe a strong genomic turn also in the global health agenda, both in research and policies. This gene-centred view links health disparities to minor genomic differences of populations frequently classified as races. The so-called racialisation of health is only but one of its consequences. This perspective entails a linear oversimplified view of biology and health, not without political and ideological resonances (Ramírez-Goicoechea, 2014). But global/specific population health issues and policies cannot be simplified by genetic reductionism.

The goal of my contribution for this panel is to unpack this taken for granted hegemonic role of the genome when trying to explain common/specific contemporary diseases and ailments that are placing public national health systems under strain (i.e. globesity, metabolic syndrome, cardiovascular disease, oxidative stress, inflammatory syndrome, depression, post-traumatic syndrome, …). I think that health issues can be better understood when considering the relevance of epigenetic processes triggered by bodily experiences and responsiveness to specific somatic and extra-somatic economic, political, and cultural environments. Epigenomics is the study of how, when, why, where, genomic materials and their products become active or not within a complex regulatory systemic network of biochemical, cell, histological, organic, neural and bodily non-linear interactions. Epigenetic processes are environmentally sensitive. They may be stochastically triggered/switched off/modulated/reprogrammed, under specific bodily states derived from our somatic responsiveness to particular materialsymbolic practices and experiences through our biosocial life courses (Ramírez-Goicoechea, 2013). Based on relevant and contrasted empirical and ethnographic literature, I will claim the non-linear complex impact of inequity, disenfranchisement, psychoemotional social suffering, life styles and cultural practices, on many of the epigenetic processes that underlie many contemporary health disorders and conditions. References

Paper short abstract:

This paper considers Qatari negotiations of the globalized genetics discourse and how intersections are influenced by local conceptions of the body, kinship and religion.

Paper long abstract:

The 2012 "Qatar National Research Strategy" mandates a 'dedicated research program focused on the understanding of the genetic causes of diseases and conditions in Qatar.' Considerable state funds have been channeled towards understanding the country's high rates of diabetes, cardiovascular disease, obesity, and genetic disorders. Research, including the mapping of the genome, has been undertaken in order to understand Qatari genetic difference and its impact on health. Furthermore, the particularities of the Qatari context (genetic singularity of the Qatari population and high rates of consanguinity) have attracted global research initiatives. Despite the public dissemination of related knowledge the prevalence of certain diseases continues to rise. Similarly, despite public health campaigns aimed at reducing consanguinity, the practice is increasing. This paper explores Qatari negotiations of biomedical genetic knowledge, particularly in light of indigenous conceptions of the body, kinship systems and marriage practices. Islam and accompanying notions of fate impact the way biomedical knowledge is incorporated and/ or resisted. Benefits of close marriage were often seen to outweighed potential risks. Although familiar with the discourse of genetics, participants were ambivalent about genetic risk and pointed to other possible causes. Fetal environment was emphasized when making sense of the demise of a pregnancy or when a child is born with illness or disability. A woman's physical and emotional state during pregnancy took importance over other forms of explanation. The paper considers possible pathways of the "global" entering and being resisted by local conceptions of pregnancy, inheritance and kinship.

Paper short abstract:

This paper briefly explores the relationship between indigenous understandings of the ‘Arab Genome’ and desert cosmologies in the United Arab Emirates, arguing that indigenous categories of the body and fate radically inform attempts the promote health seeking behaviour in the Emirates.

Paper long abstract:

In light of increasingly high rates of diabetes, heart disease and obesity among citizens of the Arabian Gulf, popular health discourse in the region has emphasised the emergent Arab genome as the primary etiological basis of major health conditions. Local health authorities seek programmes that research genetic susceptibility for certain health concerns. However, after both many years of public dissemination of genomic knowledge in the region, and widespread acceptance of this knowledge among Gulf Arab citizens, the rates of diabetes, obesity and heart disease continue to increase. This paper briefly explores the clash between indigenous Islamic knowledge systems and biomedical knowledge systems imported into the United Arab Emirates. Rather than radically informing health seeking behaviours among many UAE citizens, the emphasis on the 'Arab Genome' has instead reconfirmed the authority of Bedouin cosmological understandings of disease, reshaping the language that people use to engage with their bodies and their health. Local cosmology, Islamic ideology, and desert kinship practices remain powerful constructs that often operate in contention, in sometimes powerfully subtle ways, with novel health initiative regimes. For many people in the region, genomic information, is it is often discussed and propagated in the UAE, shares an intimate relationship with ideas of fate and agency, and sometimes serves to mitigate the increasingly uncertain terms of engagement that people share between the body, the city and an unstable ground.