According to a story from Science Alert, an ugly and unpleasant tale involving the devastating rare genetic illness known as Huntington’s disease will culminate in a lawsuit. The outcome of the case could forever alter the expectations placed on doctors when treating patients in the UK. In a trial slated for November next year, a woman will sue her father’s doctors for failing to disclose that her father had Huntington’s disease.
About Huntington’s Disease
Huntington’s disease is a heritable disorder that causes brain cells to die. This is a long term, progressive, and ultimately lethal disease that causes severe debilitation over time. The disease is caused by a genetic mutation that affects the HTT gene. It normally appears between 30 and 50 years, but in rare cases is can occur before age 20. Symptoms of Huntington’s may first appear as subtle mood and behavioral changes and loss of coordination. Other symptoms include random movements called chorea, abnormal posture, sleep issues, trouble chewing, swallowing, and speaking, dementia, anxiety, depression, and impulsivity. Nine percent of deaths are the result of suicide. Treatment for Huntington’s disease is symptomatic, with no cure or disease altering therapies available. Most patients die around 15 to 20 years after their diagnosis. To learn more about Huntington’s disease, click here.
A Series of Unfortunate Events
This story of family tragedy begins in 2007, when the woman’s father killed her mother. He was convicted of manslaughter with diminished responsibility due to mental health concerns. It was two years after this conviction that the man’s doctors began to suspect that he may have Huntington’s disease, which can lead to erratic, dangerous, and impulsive behavior.
Given that there is a 50 percent chance if heritability from anyone who has the illness, the father’s doctors told him to tell his daughters about the diagnosis. However, the man, whose decision making was already being adversely affected by Huntington’s, refused. He testified that he feared it would lead to them getting upset, having an abortion, or killing themselves.
The doctors chose not to reach out to the man’s family themselves out of respect for his right to medical privacy and confidentiality. In 2010, still without the knowledge of the deadly disease that she could carry, the woman in the case had her first daughter. Only later did she accidentally learn of her father’s illness. In 2013, she was diagnosed with Huntington’s disease.
Now the woman must live in fear of the future that her daughter she will face. While the outcome of the case hangs in the balance, it could result in fundamental changes to medical law in the UK.