1. ESRC Genomics Network (archive)
  2. Gengage
  3. The Human Genre Project

Cesagen · People

Mrs. Jackie Hughes

PhD Student

Qualifications

PhD

Telephone

029 2087 0025

Email

needsj@cardiff.ac.uk

Room

1.02

Building

6 Museum Place

Biography

Jacqueline’s interest in genetics and society began as a result of a Wellcome Trust funded research project entitled ‘Genetics and Insurance: The Problem of Adverse Selection’ which began in 2002. The Wellcome Trust research was designed to discover if people at risk of four different genetic disorders adversely selected insurance products in breach of insurers’ good faith. An additional part of the study was the construction of life tables for insurance use, which were based on actual disease information for four genetic conditions rather than on more general epidemiological data.

Jacqueline’s PhD was awarded in 2010 for a qualitative study of a clinical management and research clinic for Huntington’s disease, a fatal genetic disorder. The study showed how the disease has moved from being simply considered ‘genetic’, to a framework of neuroscience which has allowed translation of further new technologies in the search for treatment or cure. The move includes patients and families as participants in global research created from local data collection, illustrating how local clinic activity feeds into the achievement of much larger research objectives via standardisation of procedures. The co-operation of patients and carers is seen as an extension of a ‘thought-collective’ (Fleck, 1932) which currently seeks and approves the use of foetal tissue in neuro-transplantation.

Her other interests include most areas of the Sociology of Health and Illness, Qualitative Research Methods, the Sociology of Neuro-Science and Genetics, Health and the Finance Industry.