Do we have a right to know if we could have the Huntington’s disease gene?

Not telling your child that this hereditary condition is in the family can be devastating later on

On a lazy Sunday morning in May last year, Isobel Lloyd was at her boyfriend’s house, having coffee with his mum. The conversation had worked around to Lloyd’s grandma – her mother’s mother – who’d died in her 50s, when Lloyd was very young. Lloyd’s only memories of her had been hospice visits where her grandma lay bedbound, unable to talk or swallow, with no control over how her body moved. Lloyd had forgotten the name of her grandma’s disease, hadn’t thought about it in years. Like most 20-year-olds, she was future-focused – a student from Yorkshire, keen on her studies, in love with her boyfriend of four years.

Sitting in his family kitchen, they began reeling off degenerative diseases. Motor neurone. Multiple sclerosis. Parkinson’s. Alzheimer’s. Then finally Huntington’s disease (HD). In a flash of recognition, Lloyd knew that was the one her grandma had. “It just clicked,” she says. “I Googled it on my phone – and that’s when I read that it was genetic. My mum had a 50% risk of getting it – and if she did, I had a 50% risk, too.”

Continue reading…