The GAMY Project

Genetic Literacy and Family History: A Study of Young People in the South Wales Valleys (2008-2010)

The key goals of this project are to:

  • Engage young people in tasks that utilise new qualitative methodologies in order to collect data about their attitudes to genetics
  • Understand influences on their attitudes to genetics, particularly in relation to disease, reproduction and lifestyle
  • Promote genetic literacy amongst all project participants as the study progresses
  • Inform debates about engaging hard-to-reach communities with science and technology

The Wellcome Trust awarded a grant of £128,000 over two years to fund this project. It explored the influences on young people’s attitudes to genetics, particularly in relation to cancer genetics and cardiac genetics; how were these attitudes formed; how were they located in particular communities, such as Merthyr Tydfil in South Wales; how they related to other attitudes, for example, to reproductive decision making and lifestyle choices; and whether they changed over time when young people engaged with a series of tasks that were intended to promote genetic literacy?.

This was a qualitative study with twenty young people aged 16-18, based at the Science Shop in Merthyr Tydfil, South Wales over two years. Participants were interviewed individually and also took part in a focus group every year. The purpose of the focus group was to map out a genetics task, broadly outlined from the outset, but the exact nature of which were determined by the participants themselves. These tasks were carried out on a one-to-one basis with the assistance of the project team and included constructing family trees, compiling genetic diaries, and producing photo biographies/short films about their family history using mixed media.

Research team

Rachel Iredale, Maggie Kirk, Mark Brake, Steve Harris and Martin O’Neill.

Collaborators include the Institute of Medical Genetics, Science Shops Wales, Merthyr Media, Techniquest, Wales Centre for Health, Swansea University, GIG, SETPOINT WALES and the NHS Education and Development Centre.

More information

Watch Oort Kuiper’s rap commissioned for the GAMY project. An alternative link is via YouTube.

Please download the project report. (PDF, 3.95Mb)

Please contact Rachel Iredale for more details.