The re-classification of sickle cell and thalassaemia (recessively inherited blood disorders (IBDs) within ‘prevention and management of birth defects’ by the WHO, in 2011, marks an important moment in the framing of these disorders as an emergent global health crisis. A much higher incidence poses significant healthcare challenges in low and middle income countries, especially sub-Saharan Africa, India and Brazil. India is estimated to have the largest number of IBD carriers in the world (around 42-45 million); where approximately 22,500- 37,000 babies with these disorders are born each year– largely in rural and poor communities with little access to long term care. Despite cheap diagnostic tests and treatments, including new born screening and curative stem cell transplants, available across public and private sectors, only 5- 10 percent of these children receive optimal care in India.
The main aim of our research is to analyse the practices and policies surrounding the treatment and ‘prevention’ of sickle cell and thalassaemia as a global health crisis; and how these relate to the experiences of people affected by these disorders in the rural, poor and ethnically marginalised, ‘tribal’ communities in India. To that end, a multi-sited ethnography across four geographical areas, Delhi, Maharashtra, Gujarat and Rajasthan will be carried out. Our main objective is to engage with the local communities to make recommendations for policy and practice that will address some of the complex social and ethical issues raised by the governance of recessive gene disorders within the broader debates on the use of genomics in addressing global heath inequalities.
Fieldwork commenced in December 2016 and will be completed by December 2018, followed by various dissemination events planned for Autumn 2019. If you would like further information on the project, please feel free to contact Sangeeta Chattoo or Karl Atkin.