TY - BOOK

T1 - Ethics and experiment

T2 - an ethnographic study of clinical gene therapy

AU - Addison, Courtney Page

PY - 2017

Y1 - 2017

N2 - This thesis is an anthropological study of gene therapy. Gene therapy is an experimental medical technique, in which modified DNA is used as a therapeutic for diseases that have a whole or partial genetic cause. Clinical trials of gene therapies are underway in many countries around the world. However, social scientists have yet to devote much attention to this ethically contentious and medically complex field.This project aimed to identify and explore social and ethical factors shaping gene therapy practice in clinical settings. It is based on six months of participant observation in a London children’s hospital (the UKCH), thirty-two interviews with key actors in the gene therapy field, and scientific and policy document analysis. One of the main interests of this research is with the politics of ethics.The thesis shows that ‘ethical boundary work’ was central to establishing the credibility of gene therapy, and the authority of its practitioners. The politics of ethics can also be discerned in practice: the UK research ethics system structures scientific work but cannot account for the various, complex, and on-going ethical dilemmas that patients and practitioners face when undertaking gene therapy. The thesis explores some such dilemmas. It also identifies translation, the process of moving research from pre-clinical phases to clinical trials, as a key challenge for contemporary gene therapy, due to the material, technical, and social changes this shift entails. Translation requires building new relationships between patients, practitioners, regulators, and industry partners, and involves navigating conflicting or unclear expectations. As the first ethnographic exploration of gene therapy, this research contributes a new body of knowledge about the socio-ethical complexities of an under-examined scientific field.

AB - This thesis is an anthropological study of gene therapy. Gene therapy is an experimental medical technique, in which modified DNA is used as a therapeutic for diseases that have a whole or partial genetic cause. Clinical trials of gene therapies are underway in many countries around the world. However, social scientists have yet to devote much attention to this ethically contentious and medically complex field.This project aimed to identify and explore social and ethical factors shaping gene therapy practice in clinical settings. It is based on six months of participant observation in a London children’s hospital (the UKCH), thirty-two interviews with key actors in the gene therapy field, and scientific and policy document analysis. One of the main interests of this research is with the politics of ethics.The thesis shows that ‘ethical boundary work’ was central to establishing the credibility of gene therapy, and the authority of its practitioners. The politics of ethics can also be discerned in practice: the UK research ethics system structures scientific work but cannot account for the various, complex, and on-going ethical dilemmas that patients and practitioners face when undertaking gene therapy. The thesis explores some such dilemmas. It also identifies translation, the process of moving research from pre-clinical phases to clinical trials, as a key challenge for contemporary gene therapy, due to the material, technical, and social changes this shift entails. Translation requires building new relationships between patients, practitioners, regulators, and industry partners, and involves navigating conflicting or unclear expectations. As the first ethnographic exploration of gene therapy, this research contributes a new body of knowledge about the socio-ethical complexities of an under-examined scientific field.

UR - https://soeg.kb.dk/permalink/45KBDK_KGL/fbp0ps/alma99122461289805763

M3 - Ph.D. thesis

BT - Ethics and experiment

PB - Department of Food and Resource Economics, Faculty of Science, University of Copenhagen

ER -