Paper short abstract:

This paper explores the precarious nature of risk and temporality of cure promised by stem cell transplants for children with thalassaemia, using ethnographic material from a study being carried out in India. Whilst state subsidy bridges inequities in care,it creates further dilemmas for parents.

Paper long abstract:

Stem cell transplants offer a promise of cure for several difficult and painful conditions including thalassaemia, arguably the most common single gene disorder that affects millions of children born with a serious haemoglobin disorder, largely in (malaria prone) low and middle income countries of the South. Whilst the technology and expertise for harvesting haematopoietic stem cells might be reasonably stable, what constitutes risk of rejection, failure and long term complications and indeed 'cure' beyond the first couple of years remain widely contested.

This paper will explore the precarious nature of risk and temporality of cure promised by stem cell transplants for children with thalassaemia, using ethnographic material from a study being carried out in India. The main questions posed here are: What are the practical and ethical conundrums faced by parents (predominantly from very poor rural/urban areas) in opting for a transplant for their child. In what ways might treatment subsidies offered by state and non-governmental organisations working with the state affect these decisions? How do they interpret and weigh what constitutes caring and risk in the present with cure in the future, and how might these assessments affect reproductive decisions about having another child who might potentially be a perfect donor for the older sibling who has the condition?