Waiting for the cure: mapping the social relations of human gene therapy research

Article Abstract:

Issues concerning the relationships between the key participants in cystic fibrosis gene therapy research are discussed. These include the researchers, the physicians, the patients and their families, and the Cystic Fibrosis Foundation, amd aspects of the research can conflict with the interests of the patients. Patients are in a weak position to organize and assert their concerns, and their doctors can be sceptical of the research.

Cystic fibrosis

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Genes as drugs: the social shaping of gene therapy and the reconstruction of genetic disease

Article Abstract:

Issues are discussed concerning the usefulness of concepts from the sociology of technology in investigating how new technologies and new disease concepts are co-constructed. Researchers had to engage in a process of heterogeneous social-technical engineering to introduce genetic medicine into experimental clinical practice. Activities this included are listed.

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'Losing the plot'? Medical and activist discourses of contemporary genetics and disability

Article Abstract:

Issues are discussed concerning the absence of disability perspectives from research on the cultural construction of genetics. Specifically, the medical establishment's discourse on disability is contrasted with that of disabled peoples' civil rights movement. Increased communication between the stakeholders in genetics is advocated.

Disabled persons, Public opinion

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