“My whole life is ethics!” Ordinary ethics and gene therapy clinical trials

Research output: Contribution to journal › Journal article › Research › peer-review

Standard

“My whole life is ethics!” Ordinary ethics and gene therapy clinical trials. / Addison, Courtney; Lassen, Jesper.

In: Medical Anthropology: Cross Cultural Studies in Health and Illness, Vol. 36, No. 7, 2017, p. 672-684.

Research output: Contribution to journal › Journal article › Research › peer-review

Harvard

Addison, C & Lassen, J 2017, '“My whole life is ethics!” Ordinary ethics and gene therapy clinical trials', Medical Anthropology: Cross Cultural Studies in Health and Illness, vol. 36, no. 7, pp. 672-684. https://doi.org/10.1080/01459740.2017.1329832

APA

Addison, C., & Lassen, J. (2017). “My whole life is ethics!” Ordinary ethics and gene therapy clinical trials. Medical Anthropology: Cross Cultural Studies in Health and Illness, 36(7), 672-684. https://doi.org/10.1080/01459740.2017.1329832

Vancouver

Addison C, Lassen J. “My whole life is ethics!” Ordinary ethics and gene therapy clinical trials. Medical Anthropology: Cross Cultural Studies in Health and Illness. 2017;36(7):672-684. https://doi.org/10.1080/01459740.2017.1329832

Author

Addison, Courtney ; Lassen, Jesper. / “My whole life is ethics!” Ordinary ethics and gene therapy clinical trials. In: Medical Anthropology: Cross Cultural Studies in Health and Illness. 2017 ; Vol. 36, No. 7. pp. 672-684.

Bibtex

@article{3fc0150378804533bb0eb38c63246985,
title = "“My whole life is ethics!” Ordinary ethics and gene therapy clinical trials",
abstract = "What and where is ethics in gene therapy? Historical debates have identified a set of ethical issues with the field, and current regulatory systems presume a discrete ethics that can be achieved or protected. Resisting attempts at demarcation or resolution, we use the notions of “ordinary” or “everyday” ethics to develop a better understanding of the complexities of experimental gene therapy for patients, families, and practitioners and create richer imaginings of ethics in the gene therapy sphere. Drawing on ethnographic research in several clinical trials, we show that patients/parents can acquire some control in difficult medical situations, and practitioners can attune their care to their patients{\textquoteright} needs. The human provenance of gene therapy practice, and the irreducible sociality of ethics, means that understanding the ethics of this medical field also requires understanding the everyday worlds and relationships of those at its heart.",
keywords = "Clinical trials, ethnography, gene therapy, ordinary ethics",
author = "Courtney Addison and Jesper Lassen",
year = "2017",
doi = "10.1080/01459740.2017.1329832",
language = "English",
volume = "36",
pages = "672--684",
journal = "Medical Anthropology",
issn = "0145-9740",
publisher = "Taylor & Francis",
number = "7",

}

RIS

TY - JOUR

T1 - “My whole life is ethics!” Ordinary ethics and gene therapy clinical trials

AU - Addison, Courtney

AU - Lassen, Jesper

PY - 2017

Y1 - 2017

N2 - What and where is ethics in gene therapy? Historical debates have identified a set of ethical issues with the field, and current regulatory systems presume a discrete ethics that can be achieved or protected. Resisting attempts at demarcation or resolution, we use the notions of “ordinary” or “everyday” ethics to develop a better understanding of the complexities of experimental gene therapy for patients, families, and practitioners and create richer imaginings of ethics in the gene therapy sphere. Drawing on ethnographic research in several clinical trials, we show that patients/parents can acquire some control in difficult medical situations, and practitioners can attune their care to their patients’ needs. The human provenance of gene therapy practice, and the irreducible sociality of ethics, means that understanding the ethics of this medical field also requires understanding the everyday worlds and relationships of those at its heart.

AB - What and where is ethics in gene therapy? Historical debates have identified a set of ethical issues with the field, and current regulatory systems presume a discrete ethics that can be achieved or protected. Resisting attempts at demarcation or resolution, we use the notions of “ordinary” or “everyday” ethics to develop a better understanding of the complexities of experimental gene therapy for patients, families, and practitioners and create richer imaginings of ethics in the gene therapy sphere. Drawing on ethnographic research in several clinical trials, we show that patients/parents can acquire some control in difficult medical situations, and practitioners can attune their care to their patients’ needs. The human provenance of gene therapy practice, and the irreducible sociality of ethics, means that understanding the ethics of this medical field also requires understanding the everyday worlds and relationships of those at its heart.

KW - Clinical trials

KW - ethnography

KW - gene therapy

KW - ordinary ethics

U2 - 10.1080/01459740.2017.1329832

DO - 10.1080/01459740.2017.1329832

M3 - Journal article

C2 - 28494167

AN - SCOPUS:85021174165

VL - 36

SP - 672

EP - 684

JO - Medical Anthropology

JF - Medical Anthropology

SN - 0145-9740

IS - 7

ER -

ID: 180766452