As research on genetics and technology brings us new treatments for illnesses, it also brings with it new ethical dilemmas. These dilemmas are especially pertinent to young people, who will be faced with decisions on healthcare that have not been open to people from previous generations. However young people are a group that researchers do not engage particularly effectively with, which is why a new project used the medium of the internet and social networking sites such as Facebook and YouTube to harness young people’s opinion about the ethics of genetics.

16 participants from South Wales aged 16-19 years took part in an online discussion group, exploring the ethical issues around cancer genetics, cardiac genetics and designer babies. In particular they debated the ethical implications surrounding online Storytelling. Online stories are when people share personal health related stories with others on the internet. The project asked the participants to define the ethical boundaries that they would set when providing online stories relating to genetics. The project proved successful, as the majority of the group said that their experiences were positive and the website was a successful way of stimulating debate.

This project noticeably benefitted the young people. The leader of the project Dr Juping Yu is a research Fellow in the Faculty of Health, Sport and Science at the University of Glamorgan. She said:

‘The researchers had an opportunity to learn how to engage young people online and collect their views, whilst the young people had an opportunity to express their views.’

‘It was great to know that young people enjoyed the participation and gained some knowledge which they would not have otherwise obtained.’

‘We were impressed at the thought they put into the discussion and the maturity of some of their answers.’

The researchers also benefitted from the experience, as they developed the skills needed to use technology to successfully engage a hard to reach demographic. These skills will benefit future research, as the project managers intend to use internet technology in future projects. The project also allowed researchers to build new working relationships with a range of groups, such as schools, a college and various youth groups.

Overall the project was an example of universities listening to, working with, and learning from their communities. The researchers are currently preparing papers for publication to disseminate their findings about young people’s views on storytelling and the strategies they used to engage the participants. They also plan to do further research using online focus groups and to share their experiences through delivering teaching sessions.

Interesting Links

Yu J, Taverner N & Madden K (2011) Young people’s views on sharing health-related stories on the Internet. Health and Social Care in the Community doi: 10.1111/j.1365-2524.2010.00987.x

Lead: Dr Juping Yu, Faculty of Health, Sport and Science, University of Glamorgan