News & blog British Science Festival: Hunting for a Huntington’s treatment Written by Alan Barker, Freelance Writer, British Science Festival Dr Emma Yhnell is looking for ways to build brain resilience in people living with Huntington’s using computer games. She explained more in the Charles Darwin Award Lecture at this year’s British Science Festival. Alan Barker tore himself away from his smartphone and listened in. In some parts of the academic establishment, you’re likely to hear two major prohibitions about science presentations. One: never present until you’ve got results. And two: never, ever use props. Emma Yhnell of Cardiff University cheerfully ignores both diktats. In the Charles Darwin Award Lecture at this year’s British Science Festival, she told us that her feasibility study is incomplete – so she can’t even look at the interim results, let alone discuss them. And, to help her explain some fundamentals of genetics, she happily strung a collection of jeans on a washing line across the stage. She even extended the denim theme to the pre-show music: Woody Guthrie serenaded us as we took our seats. Guthrie died in 1967 of complications from Huntington’s disease, so his music guided us neatly towards Emma’s main theme: how to help people living with Huntington’s. At its heart, then, this was a lecture about research methods. But it didn’t feel like it. True, she flashed up a flowchart at one point; but at every stage, Emma related her material to her audience’s interests and values. Emma made a jean-ius use of onstage props (Picture: Twitter/Emma Yhnell) She began by challenging us directly to consider what makes us who we are. That took us to genes and jeans: the denim took on the illustrative role of explaining the structure of DNA, vital information in the understanding of Huntington’s and how it develops. (Little-known fact: each of your cells contains about two metres of DNA. With 50 trillion cells in the average human body, we each contain enough DNA to stretch to the Sun and back 300 times. Think about it.) Huntington’s is cruel. It’s caused by a gene that expands unusually to twice or three times its normal length. The gene codes for a protein that does extensive damage to the nervous system. (“If there’s one thing I want you to remember,” Emma told us, “it’s that genes make proteins.”) If you carry this expanded gene, the risk of developing Huntington’s is 100%. One in 1,200 people are affected, making it challenging to carry out studies of any size. The disease produces physical symptoms – uncontrollable movement and shaking – but it also affects cognitive function, often before the physical symptoms set in. A great deal of research is seeking ways to intervene at the physical and genetic level; Emma wants to find ways of increasing cognitive resilience, and her tool of choice is brain training. After demonstrating how brain training works using the Stroop test (try it for yourself), she demonstrated a couple of elements of the games she’s using. But perhaps the most interesting part of her talk was her discussion of the ethical dimensions of her research. Look familiar? The Stroop test is widely used for brain training (Picture: Khayne, Wikimedia Commons) To begin with, will brain training work? Does improving your skill at a game on an iPad improve your skills in real life? Would it be helpful to customise the training for people with different digital abilities, or at different stages of the disease? Then there are issues surrounding the research process. Emma explained randomisation, subtly smuggling in a key feature of any social study: she’s forbidden from deciding who does the training and who goes into the control group, and she’s very pleased that she’s not forced to decide. But how do participants react when they’re asked to take part but don’t do brain training that might improve their quality of life? What’s the effect of bringing participants to a clinic? Is it better to work with people in their homes? How does the study affect participants’ friends, families and carers – and can those people themselves make a useful contribution to the work? We emerged from Emma’s account with a rich sense of the complexity of a clinical study. She’s not just measuring how training can affect a brain struggling with disease; she’s reflecting on the thoughts and feelings of the people she’s studying, and the people who care for the people she’s studying. And her absorbing lecture reminded us that good scientists never lose sight of their work’s ultimate aim: not merely to understand the effects of an intervention, but to improve people’s lives. Find out more about the British Science Festival here.