At last, hope for families living in the shadow of Huntington’s disease: An innovative drug may soon offer new ways to fight this cruel inherited condition

Anna weighs in on this article by Robin McKie for The Guardian/Observer Special Report from her expertise as a genetic counsellor
3rd March 2019

Excerpt from article:

"The discovery of the Huntington’s gene may not have resulted in the immediate creation of treatments, but it did lead to one important development: a test that could identify those who would succumb to the condition in later life. Previously, affected individuals were only spotted at the stage when their symptoms were manifesting themselves.

Some researchers envisaged a future in which tests would be offered to at-risk men and women who were planning families. Those who registered positive would be persuaded not to have children. Thus Huntington’s disease would slowly be eliminated from the human gene pool.

But this idea ignores the fact that many people from affected families are terrified they might die in the same grim fashion as their parents. As a result, most people at risk of the disease choose not to have the test. And many genetic counsellors accept this decision, says Anna Middleton, head of society and ethics research at the Wellcome Genome Campus in Cambridge.

'Managing the uncertainty is one of the most difficult things to cope with for people from affected families. The whole condition is a myriad of uncertainties. People have to cope with so many factors – the experience of seeing the disease in relatives, the acceptance of uncertainty, and being able to live in the moment.'"

Citation:

McKie, R 2019. 'At last, hope for families living in the shadow of Huntington’s disease: An innovative drug may soon offer new ways to fight this cruel inherited condition.' The Guardian. 3rd March. Available at: https://www.theguardian.com/science/2019/mar/03/huntingtons-disease-new-... [Accessed: 7 March 2019]