X-Men Inheritance - research project launched to discover how families understand genetics
Advances in genetics mean that information from our DNA is increasingly being used in the clinic and more families will come into contact with treatments based on genetic insights.
Genetic technology is developing very rapidly, meaning things that were once only possible in science fiction are today becoming a reality. It is currently not known how families will talk about inheritance, DNA and genetics in this new era when genetic information will be so freely available, but children today will see their future healthcare dominated by information contained in their genes.
The 2012 Wellcome Trust Monitor report found that only about 12 per cent of people said they knew what the human genome was and 33 per cent said they understood the term genetic modification. In the most recent Monitor report (2016), while almost 9 in 10 people are aware that genetic tests can predict the likelihood of developing diseases, 40 per cent of people had heard very little about such tests.
We’re living in an age where science fiction movies are blockbuster hits, and these films contain many scientific references, often related to genetics. In the ‘X-Men’ film series, the ‘X-Men’ superheroes, such as Wolverine and Storm, have powers caused by genetic mutations, and this means that people are now used to hearing words such as ‘mutants’ or ‘mutation’.
The study is being led by Jon Roberts, genetic counsellor and a researcher at the Wellcome Genome Campus and Kings College London. He is exploring how families talk about these issues, and is using people’s own interests and knowledge, such as the ‘X-men’ franchise, to help spark engagement with the emerging challenges of genomics and health.
“I’m particularly interested in how families use their own interests and knowledge when talking about genetics – it’s an incredibly important issue for families, and yet the conversations around it aren’t happening. The only point where such a discussion might happen is when there’s a diagnosis in a family with a genetic element – only at that point is there a rush to comprehend the issues. Finding out what people know and how they’re talking about this will help us develop better ways to engage people with genetics, and assist with communication between families and medical staff in the clinic.”
Jon Roberts Genetic counsellor and a researcher at the Wellcome Genome Campus and Kings College London
“We’re at a tipping point, our genes hold great promise for our own personalised treatments, but to engage people in debate about genetics, we need to know how to make it resonate; popular film, as explored in this study, is a great start.”
Dr Anna Middleton Principal Social Scientist at the Wellcome Genome Campus
The survey is open to anyone to complete. Those wishing to take part can complete it here: http://www.characterofdna.com/
More information
Blog on science in film: https://genomethicsblog.org/2016/04/18/cinema-magic-for-engagement-with-genomics/
Blog on how Harry Potter could be helpful when talking to children about genetics. http://www.characterofdna.com/#!Talking-to-your-children-about-genetics-Try-using-‘Harry-Potter’/cjds/56e7e4ea0cf286cff61c5ae2
Selected websites
Wellcome Genome Campus Courses, Conferences and Public Engagement programme
The Wellcome Genome Campus Courses, Conferences and Public Engagement programme delivers training and engagement focussed around genomics, its applications, and implications. Its vision is to inspire a range of audiences both on the Campus and beyond it, and make the world of genomics open and accessible to all. Wholly funded by the Wellcome Trust, three teams work as a single, joint initiative to offer a wide range of events and activities, collaborating closely with scientists from the Wellcome Trust Sanger Institute and EMBL-EBI.
The Wellcome Trust
The Wellcome Trust is a global charitable foundation dedicated to improving health. We support bright minds in science, the humanities and the social sciences, as well as education, public engagement and the application of research to medicine. Our investment portfolio gives us the independence to support such transformative work as the sequencing and understanding of the human genome, research that established front-line drugs for malaria, and Wellcome Collection, our free venue for the incurably curious that explores medicine, life and art.
