Spliced: Boundary-work and the establishment of human gene therapy

Human gene therapy (HGT) aims to cure disease by inserting or editing the DNA of patients with genetic conditions. Since foundational genetic techniques came into use in the 1970s, the field has developed to the point that now three therapies have market approval, and over 1800 clinical trials have...

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Bibliographic Details
Published in:BioSocieties 2017-06, Vol.12 (2), p.257-281
Main Author: Addison, Courtney
Format: Article
Language:English
Subjects:
Alliances
Clinical research
Clinical trials
Cure
Deoxyribonucleic acid
DNA
Editing
Ethics
Gene therapy
Genetics
Legitimacy
Life
Medical research
Natural environment
Original Article
Patients
Social Sciences
Somatic cells
Therapeutic alliances
Therapeutic applications
Viability
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Summary:Human gene therapy (HGT) aims to cure disease by inserting or editing the DNA of patients with genetic conditions. Since foundational genetic techniques came into use in the 1970s, the field has developed to the point that now three therapies have market approval, and over 1800 clinical trials have been initiated. In this article I present a brief history of HGT, showing how the ethical and practical viability of the field was achieved by key scientific and regulatory actors. These parties carefully articulated gene therapy’s scope, limiting it to therapeutic interventions on somatic cells, and cultivated alliances and divisions that bolstered the field’s legitimacy. At times these measures faltered, and then practitioners and sometimes patients would invoke an ethical imperative, posing gene therapy as the best solution to life and death problems. I suggest that we consider how boundary-work stretches out from science to enlist diverse publics, social formations and the natural world in the pursuit of legitimacy.
ISSN:1745-8552
1745-8560
DOI:10.1057/biosoc.2016.9