Disadvantaged young People from Butetown Youth Pavillion and Parc Prison gave their views on the future of gene technology, in new project
Developments in DNA technology mean that in the near future, it will be possible, at a relatively low price, to analyze a person’s entire DNA code to reveal whether they will or could develop some physical and mental health conditions such as heart disease, stroke, Parkinson’s, schizophrenia and depression. Often referred to as "the $1000 genome", one of the benefits of this technology is that it could allow people to take measures into their own hands to prevent disease. This technology, however, raises social and ethical issues. These issues are particularly prevalent to young people, who will have to decide how to use this technology in the future.
With this in mind, members of the Wales Gene Park teamed up with Cardiff based science centre Techniquest to enlist the help of young people from Butetown Youth Pavilion and Parc Prison, who participated in an innovative new project, exploring the issues surrounding developments in gene technology. They used drama, art, film and hands on experiments, and worked with artist Julia Thomas to explore the social and ethical issues of genetics. They learned how to extract DNA in a workshop, and played ‘Meet the Gene Machine, a drama/discussion event designed to raise awareness of the ethical implications raised by advances in medical genetics.
The leader of the project Ms Claudine Anderson works at the Wales Gene Park. She said:
‘The $1000 genome is seen as an important goal for research and clinical diagnostics due to its potential for improving human health. The $1000 genome is expected to become a reality in the near future, however little is known about the public’s perspectives of this development, as the discussions about the implications of the technological are discussed mainly amongst experts.’
‘By using this topic in our project, we aimed to discover the views of young people about the benefits and concerns of affordable whole genome sequencing, and increase young people’s awareness of the implications that scientific developments may have on their lives in the future.’
After these sessions the young people and their family and friends joined the project team, and the university staff who assisted at the sessions at celebration events held at Cardiff University and Parc Prison. At the event, the art produced by the participants was displayed, providing an opportunity for them to discuss their art with others, and highlight the project and its outcomes to those who were involved in public engagement.
The benefits of the project were striking, for the young people in Parc Prison particularly. Ms Claudine Anderson said:
‘The young people in prison did not believe that people from a university were keen to work with them and were interested in their opinions about genetics. We think that by taking part in this project they felt more valued.’
‘Although initially I believed that the young people in prison were going to be the most difficult group to engage with, their workshops were the most rewarding.’
One particular moment stood out in Ms Anderson’s mind as a critical point in the young people’s development. She said:
‘At the end of one of the workshops at Parc Prison, the young people were allowed to listen to the radio as a treat by their teacher. However, the facilitators and university volunteers continued to talk about genetics amongst themselves. The young people at Parc prison turned down their radio so that they could voluntarily re-join the conversation about genetics. The teacher was astounded at their interest as he said afterwards that the boys never turn off the radio for anyone’
This type of engagement project also benefitted the members of the university that got involved. Ms Anderson said:
‘University volunteers said that they enjoyed working with an audience they would not normally encounter and felt that their confidence in engagement methods increased.’
More information on the artist Julia Thomas and her involvement in this project can be found here
The leaders of the project have produced a report detailing their experiences and findings which can be downloaded here
Lead: Claudine Anderson, The Wales Gene Park, Cardiff University