This international workshop seeks to be a platform for a collective inquiry into the “global" in medical genetics; how medical genetics moves globally, by examining the movement of medical practices and knowledge, technologies, and infrastructure across geographical and socio-material boundaries, between understandings of the etiology of disease, and between categories of people (experts, patients, medical professionals). We are interested in questions highlighting how and why medical genetics became part of the global health agenda; how the arrival of genetics has affected health infrastructures and put health programs and policies in place.

 

 

Argument of the event

In the 1950s, the World Health Organization became interested in genetics, originally through studies of the impact of radiations on health. Over the following decades, genetics became increasingly seen as a central part of the effort to acquire health for all, with WHO’s advocacy in the 1980s for community genetics programs in the wealthiest of its member-States. This call aimed at organizing testing and genetic counselling for common hereditary disorders as one of the most outstanding examples of the belief in genetics as a public health essential. The community genetics effort chiefly started in the Eastern Mediterranean Region, with WHO experts helping to create screening and counselling programs for beta-thalassemia. The increasing mobilization of actors and resources characteristic of global health’s lift-off fundamentally affected health infrastructures and the circulation of medical care, technologies, knowledge, moralities, and modes of engagement. This profound modification propelled an expansion of medical genetics beyond the global North, and patients' and practitioners’ subjectivities in relation to genetic knowledge and practices. As diagnostic and sequencing tools became more affordable, genetic testing became more generalized in the global South within the framework of reproductive medicine and prenatal diagnosis regarding hereditary disorders. In 2005, WHO issued a policy recommending the worldwide availability of medical genetics in primary healthcare.

More than 10 years later, although the majority of the financial investments for, and growing clinical uses of genetics are still located in the global North and as chronic disorders and risk management strategies make up a massive part of global health initiatives, medical genetics and genomics tools are increasingly present in low and middle-income countries. However, in the context of limited resources for healthcare in many of these countries, the development of medical genetics services and the recognition of genetic health as a public health priority remain controversial. The understanding and practice of genetics has been expanding from the focus on single-gene disorders in the clinic to include the application of genome sequencing technologies employed in the screening, treatment, and prevention of numerous illnesses, including multifactorial disorders. This expansion takes place under a prevention-dominated paradigm which relies both on universality — the structure of the genome, which is common to all human-beings — and on diversity — genes can behave differently, because of racial admixture and social, environmental or historical factors.

Besides the expansion of genetic medicine and genomic research in (public) health policy, clinical practice and research, genetics and genomics have long gone global, with patients traveling for treatment; DNA samples boarding airplanes; scientists, healthcare professionals and individuals sharing genomic data over the web; laboratories buying technologies abroad; genetic counselling being taught transnationally; genetic knowledge taking shapes in universities, hospitals and conferences worldwide; new local and global markets for genetic tests blossoming.

This workshop stems from our encounter with the relative scarcity of anthropological and historical work broaching genetics and genomics in the global South, compared to the scholarship available about Europe and North-America. We would like to bring together anthropologists, historians and sociologists working on genetics and genomics in all their manifestations in/on the global South, with the double aim of reflecting on the global circulations of medical genetics and genomics and their various shapes, and investigating these practices and disciplines within global health discourses, infrastructures, institutions and practices. Furthermore, we are interested in how anthropological and historical work engages with these new and diverse global and local landscapes of knowledge, practice, and policy flows.

This workshop seeks to be a platform for a collective inquiry into the “global" in medical genetics; how medical genetics moves globally, by examining the movement of medical practices and knowledge, technologies, and infrastructure across geographical and socio-material boundaries, between understandings of the aetiology of disease, and between categories of people (experts, patients, medical professionals). We are interested in questions highlighting how and why medical genetics became part of the global health agenda; how the arrival of genetics has affected health infrastructures and put health programs and policies in place.

Our understanding of the field of genetic medicine and genomics is broad, from clinical genetics to community genetics, from sequencing technologies to screening programs, from epigenetics of diabetes to pharmacogenomics. As a result, we are as interested in the place of genetic disorders in the Global Burden of Disease studies as we are in the relations between maternal and child health and genetic health programs in various societies of the global South. As the World Health Organization relabelled its  "Human Genetics Program" into "Human Genomics in Global Health" in 2016, we are also interested in the growing influence of genomics knowledge and tools outside of the laboratories.

 

This workshop will feature papers exploring:

- the historical processes of the inclusion of genetics into the international public health and global health agenda, including the past and current role of international organizations and experts networks regarding genetic medicine in the global South and the circulation of knowledge;

- (clinical) practices of medical genetics, such as the generalization of testing, the types of diseases targeted (multifactorial diseases and Mendelian diseases), the political economy of the expansion of medical genetics beyond the global North, and patients' and practitioners’ subjectivities in relation to genetic knowledge and practices;       

- the articulation of public health in the field of medical genetics/genomics, including community genetics, policies targeting multifactorial diseases through programs based on public health genomics and the bioethical frameworks these policies and programs thrive (or do not thrive) in;

- the links between genomic technologies, (trans)national research projects and local clinical practices, and the circulations of diversity as tackled by genetics and genomics.

   

Organizing group

Globhealth project

Sponsor

ERC

Partner institutions

Cermes3

Oslo University

Inserm

 

Contact

genetglobhealth@sciencesconf.org

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