Rejecting research in the name of progress: living kidney donation
Natascha Sánchez Hövel (Complutense University, Madrid)
Paper short abstract:
This paper presents ethnographic research on living donation in Spain, the "world leader in transplantation". Although substantial amounts of money are invested in the improvement of renal replacement therapy and immunosuppression, research on the health of living donors is inexistent.
Paper long abstract:
Chronic kidney disease is a generic term that refers to the progressive loss of renal function. In its end stage, renal replacement therapy is required in order to avoid the patient´s death. Currently a kidney transplant is considered the "best choice". Extensive amounts are spent on improving replacement techniques and immunosuppression. Very little is spent on health investigations, safety and the needs of living donors. In Spain, cadaveric donation has been the hegemonic practice for decades. Only ten years ago living donations were almost inexistent. Due to its important transplantation activity and high cadaveric donation rates, the Spanish Model of Coordination and Transplantation is currently considered the most successful worldwide. Nevertheless, social changes have led to a growing shortage of organs available for transplantation threatening the dominant construction of the success of the Model. Therefore, living donation has been widely promoted as nearly risk-free for the donor and ideal for the recipient. No qualitative studies have been conducted; social scientists are not at all welcome to investigate in the matter. Living donation is addressed using same logic as cadaveric donation: solidarity and altruism. This ideology is interiorized by the social actors. Although a few (biomedical) long-term studies indicate that donors frequently suffer from health consequences, information on mid and long-term physical and psychosocial risks is not given. Arguing on the basis of individual autonomy, Spain, the "undisputed world leader" leaves its living donors to their fate.
In the name of progress, disease control and elimination: medical research, global funds and local people