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).