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Inherited blood disorders, globalisation and the promise of genomics: an Indian case-study

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.

Project Aims, Objectives and Methods

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 health inequalities.

Our multi-sited ethnography involved 3 main data sets, using the following methods: 

i)review of national and international policy documents and medical literature; 

ii) main actor interviews with 30 key practitioners involved in policy making or/and providing care in 3 main sites (Delhi, Rajasthan, Maharashtra) and additional 5 interviews with key actors in Gujarat for historical reasons of their involvement in a state-wide prevention programme. In addition SC shadowed NTWS in Delhi and Sickle cell Society India (Nagpur/Maharashtra) during the first 2 years and CP and MU shadowed Thalassemia welfare Society in Jaipur to gain a more in-depth understanding the remit of these NGOs in supporting patients, parents and mediations with state service providers/ policymakers, and

iii) longitudinal interviews with 1-3 members (1 to 4 times) of a family affected by thalassemia or sickle cell disorders in a sample of 100 families (20 from Delhi, 39 from Rajasthan and 41 from Maharashtra). Due to disruptions caused by COVID during 2020-22, we had to develop alternate dissemination plans with the help of our local research partners at each site.

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Time line and contact details