Tag: Huntington’s disease
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Right to know v. right not to know
IN THIS information-saturated age, what happens when the right to know comes up against the right not to know? The ease of genetic testing has brought this question to the fore. Genes, some of which contain disease-causing mutations, are shared within families, meaning the results of a test for a genetic condition inevitably affect more…
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We don’t want to know what will kill us
WHEN, in 1996, French nun Mariannick Caniou found out she didn’t have Huntington’s disease, the lethal, degenerative genetic disorder, she fell into a depression. Throughout her life, she had been convinced that she would develop the illness that had killed her mother and grandmother. So convinced, in fact, that all her most important decisions had…
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Pope Francis champions Huntington’s disease
YOSBELY Soto Soto shares a corrugated iron hut with her two sons on the shores of Venezuela’s Lake Maracaibo. The heat inside has been unbearable since her husband left her a few years ago, taking the air conditioner with him. The 32-year-old has to beg for food to feed herself and her children, something made…
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The Pope and Huntington’s disease
FRANKLIN Soto will develop Huntington’s disease (HD), a lethal genetic disorder that causes progressive mental and physical deterioration and for which there is no cure. His two sisters already have it. His wife died of the disease last year, and his three-year-old daughter has a 75 per cent chance of developing it. Franklin’s was among…
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A Faustian bargain
HUNTINGTON’S disease is awful. It slowly robs its victims of mobility, wits and emotions. And there is no cure. The idea that it might be the obverse of something good sounds, to say the least, counter-intuitive. Yet that is the contention of a small band of neuroscientists who have been studying it. They suggest the…
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Charles Sabine’s battle
IN 1996, an NBC war reporter and his crew were captured by a renegade platoon of mujahideen guerrillas near the Bosnian town of Doboj. As the sun set and the call to prayer went up, the reporter stared at a blood-spattered wall while a young warrior pulled the pin from a grenade, replaced it with…