Spliced: Boundary-work and the establishment of human gene therapy
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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.
Keywordshuman gene therapy history biotechnology genomics gene transfer boundary-work
This article benefited greatly from feedback offered by Jesper Lassen, Peter Sandøe, Samuel Taylor-Alexander and the Work in Progress group led by Silvia Camporesi at KCL’s Department of Social Science Health and Medicine. This project, as part of the Consortium for Designer Organisms, is funded by the University of Copenhagen’s Excellence Fund for Interdisciplinary Research.
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