Huntington’s disease is a debilitating, inherited neurodegenerative genetic disease of the body and mind for which there is no cure. But that might be about to change. If a new treatment being tested in Britain lives up to its pre-clinical results we will have the first treatment for the disease after decades of research. It’s a time for much celebration but also for reflection on responsibility to poor Latin American communities who enabled this discovery.
In the 1980s, before the human genome project, generations of villagers in Latin America, especially Venezuela—where the incidence of the disease is 1,000 times higher than elsewhere—donated samples of skin, blood and semen, and handed over organs of their diseased relatives, including their own children, to enable identification of the gene.
Hundreds of cell lines from these villagers sit in laboratories around the world, yet these villagers have been left in abject poverty by their disease. Some die on the street with no food. The most affected areas in Venezuela are said to be too dangerous to travel to.
Health and science writer Dara Mohammadi travels to Colombia, where he meets with families that have become resentful and mistrustful of scientists. This problem is as complicated as much socially as it is scientifically, which means nobody has taken ownership of their care.