The xenotransplantation narratives of nine type 1 diabetic patients with renal failure

Within the research project ''Treatment of Diabetes by Transplantation of Porcine Islets'' that was run by the Swedish Xenoislet Transplantation Network between 1998 and 2003, a partner project called ''Cultural Perspectives on Xenotransplantation'' investigated attitudes toward xenotransplantation development among the patients and their relatives as well as the medical personnel at a transplantation clinic in Sweden. In-depth interviews were done with 37 individuals: nurses, doctors, researchers, patients, and relatives. All interviews were taped and transcribed verbatim. In this presentation the interviews with the nine type 1 diabetic patients with renal failure that took part in the project are focused. The personal and embodied narratives of these nine patients illustrate the ambivalent situation of individuals who are both patients and (potential) experimental subjects simultaneously. Both as actual practice and as biomedical information xenotransplantation research triggers a certain kind of cultural identity of the chronically ill patients--an identity related to how the patients ''translate'' scientific information and, at the same time, counter risk and uncertainty as well as promises of remedy. A central dimension in this cultural identity is a positive but still reluctant embodied attitude toward what spearhead science can bring about.