Mother sues NHS for not telling her that she inherited the Huntingdon's disease gene from her father, who shot her mother – and says she would not have a child if she knew
- A woman known as ABC was pregnant during her father's diagnosis
- Her father made it clear that he did not want his daughter to be informed
- She claims that the NHS Trust of St. George had a duty to tell her about the diagnosis.
- ABC's daughter will have a 50:50 chance of inheriting the disease
A woman is suing the London Department of Health for not informing her that her father, who was shot dead by her mother, was diagnosed with Huntington's disease.
A woman known as ABC claims that the St. George's NHS Trust is required to ensure that her father is diagnosed with her, given that the doctors knew that she was pregnant.
She found that he carries the gene for a degenerative, incurable brain disorder only after the birth of her daughter, and that she also carried the defective gene, which means that her child has a 50:50 chance to inherit it.
A woman known as ABC claims that the St. George's NHS Trust was obliged to take care of telling her about her father’s diagnosis, as the doctors knew that she was pregnant.
ABC said she would not survive a pregnancy if she knew.
In 2009, her father was diagnosed with a “health condition” by doctors at St. George's Trust, then he made it clear that he did not want his daughter to be informed. She told him she was pregnant. He told doctors that he was afraid that she might commit suicide or have an abortion, according to the BBC.
What is Huntingdon's disease?
Huntington's disease is a condition in which the brain ceases to function properly over time. It is transmitted (inherited) from the parents of a person.
Over time, it gradually worsens and usually ends in death after 20 years.
Symptoms usually begin between the ages of 30 and 50, but can begin much earlier or later.
Symptoms of Huntington's disease may include: difficulty concentrating and memory lapses; depression; stone and clumsiness; involuntary twitching or restless movements of the limbs and body; mood swings and personality changes; trouble swallowing, speaking, and breathing; Difficulty in moving.
In the later stages of the disease, constant care is required. This is usually fatal 15-20 years after the onset of symptoms.
Huntington's disease is caused by a defective gene, which leads to the gradual damage to parts of the brain over time.
Usually you risk developing it only if one of your parents has or had it. Both men and women can get it.
If a parent has a Huntington's disease gene, there are:
1 out of 2 (50%) chances that each of their children will develop a disease is that affected children can also pass the gene on to any children they have.
It’s very rare to get Huntington’s disease without a medical history in your family. But usually this is only because one of your parents has never been diagnosed.
There is currently no cure for Huntington's disease or any way to stop it from getting worse.
But treatment and support can help reduce some of the problems that it causes.
In 2007, ABC's father shot her mother.
He was convicted of manslaughter on the basis of reduced responsibility and was detained under the Mental Health Act.
At the time, it was suspected that he might be suffering from Huntington's disease, a fatal neurological condition.
Symptoms of the disease may include: mood swings and personality changes, difficulty concentrating and memory lapses; depression; stone and clumsiness; involuntary twitching or restless movements of the limbs and body; trouble swallowing, speaking, and breathing; Difficulty in moving.
Four months after the birth of her daughter, who is now 9 years old, ABC accidentally reported the status of her father.
She was tested and found that she had inherited the Huntington gene. Symptoms usually begin between the ages of 30 and 50, but can begin much earlier or later.
Her daughter has not yet been tested, but she will have a 50 percent chance of carrying the gene.
ABC told the BBC that she would have a genetic test and she would terminate her pregnancy rather than risk having a child who inherited the disease and who might have to care for a seriously ill parent.
Disclosure of personal information without the consent of the patient may be warranted so as not to expose others to the risk of death or serious harm.
ABC and her father were reportedly undergoing NHS family therapy at the time. The ABC claims to have been committed to protecting her psychological or physical well-being.
This is the cornerstone of the relationship between doctor and patient, but it is not absolute.
If ABC wins her case, it will lead to a major change in the rules governing patient confidentiality and raise questions about the potential responsibility to care for family members after genetic testing.
The ABC case was first considered in the High Court back in 2015, when the judge ruled that a full hearing should not be held.
The ruling stated that "ABC had no reasonable justification for being careful."
However, in 2017, the Court of Appeal overturned the decision and stated that the case should be referred to court.
The ABC case was first considered in the High Court back in 2015, when the judge ruled that a full hearing should not be held. The ruling stated that "ABC had no reasonable justification for being careful." However, in 2017, the Court of Appeal overturned the decision and stated that the case should be referred to court.
St. NHS Trust Health Representative George said: “This case raises complex and delicate questions regarding competing interests between the duty of care and the duty of confidentiality.
“The court will decide on these issues during the trial.”