Sickle salinemia is a disease that is caused by genetic alteration in the hemoglobin structure. When these blood cells are not forming in the normal way, they become sickle-shaped and can have all sorts of different symptoms. Jimmy would be living out of the hospital just to keep this pain under control. He had a heart attack once because he wasn't having good blood flow to his heart. My gallbladder had to be taken out at quite a young age as well because of the same similar reason. And then multiple pulmonary embolisms, you know, acute chest syndrome, pneumonia.
Ever since the discovery of DNA scientists have been on a quest to understand the secrets of the human genome. This quest has not only involved analysing the role genes play in making us who we are – the history of genetics has also been shaped by a desire to explore how far our genes can be altered or enhanced.
In 2012, the discovery that a tool known as CRISPR could be programmed to add and remove elements of DNA marked a huge leap forward, transforming research into treatments for diseases as varied as cancer, Alzheimer’s, sickle cell and HIV, as well as many rare genetic conditions.
In this conversation, recorded at the Francis Crick Institute in London, our panel explores the urgent ethical questions that these advances have unleashed. Chaired by Dr Guddi Singh, the panel featured Tom Whipple, Science Editor at The Times, Shani Dhanda, an award-winning disability activist and inclusion specialist, Dr Güneş Taylor, postdoctoral research scientist at the Francis Crick Institute, and Jimi Olaghere, one of the first people in the world to take part in a life-changing clinical trial using gene therapy to treat sickle cell disease.
In this episode (Part I) the panel explores questions such as: what diseases should we try to cure? How should these be prioritised? What assumptions shape perceptions of disability? Where does the line between editing and enhancing fall? And ultimately who gets to decide?
The event was organised to coincide with a free exhibition at the Francis Crick Institute, London called ‘Cut + Paste,’ exploring the future and ethics of gene editing. The exhibition runs until December 2023. Visit www.crick.ac.uk/CutandPaste to find out more.
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