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A woman is suing the NHS for not telling her that she inherited her father's Huntington's disease gene



Mother sues NHS for not telling her that she inherited the Huntington's disease gene from her father who shot her mother – and claims she would not have had a child if she knew

  • The woman, known as ABC, was pregnant when her father was diagnosed
  • Her father explained that he did not want his daughter to be informed
  • She claims that St. George & # 39; s NHS Trust had a duty to try to tell her about the diagnosis
  • The daughter of ABC will have a 50:50 chance of inheriting the disease

A woman is suing the NHS London fund for not telling her that her father, who shot his mother, was diagnosed with Huntington's disease.

The woman, known as ABC, claims that St. George & # 39; s NHS Trust was guilty of her duty to try to inform her about her father's diagnosis, given that doctors knew she was pregnant.

She discovered that she had a gene for a degenerative, incurable brain disorder only after her daughter was born, and that she also carries a defective gene, which means that her child has a chance to inherit him in a 50:50 ratio.

A woman, known as ABC, claims that St. George & # 39; s NHS Trust owed her a duty of care to inform her of her father's diagnosis, given that doctors knew she was pregnant

A woman, known as ABC, claims that St. George & # 39; s NHS Trust owed her a duty of care to inform her of her father's diagnosis, given that doctors knew she was pregnant

ABC said she would not survive pregnancy if she knew.

Her father was diagnosed with this disease in 2009 by doctors from St. George & # 39; s NHS Trust, and then explained that he did not want his daughter to be informed. She told him she was pregnant. He told doctors that he was afraid he could kill himself or have an abortion, according to the BBC.

What is Huntington's disease?

Huntington's disease is a condition that, over time, inhibits the proper functioning of parts of the brain. It is transmitted (inherited) from a person's parents.

It gets worse over time and usually ends in death after 20 years.

Symptoms usually begin between the ages of 30 and 50, but can begin much sooner or later.

Symptoms of Huntington's disease can include: difficulty concentrating and memory loss; depression; stumble and clumsiness; involuntary jerking or nervous movements of the limbs and body; mood swings and personality changes; problems swallowing, speaking and breathing; difficulty moving.

Full-time nursing care is needed at later stages of the disease. It usually ends in death approximately 15 to 20 years after the onset of symptoms.

Huntington's disease is caused by a defective gene that causes gradual damage to parts of the brain over time.

There is usually a risk of development if one of the parents had or had it. Both men and women can get it.

If the parent has the Huntington's disease gene, there is:

1 in 2 (50%) chance that each of their children will get this disease – affected children are able to pass the gene on to each of their children

It is very rare for Huntington's disease to develop without a family history. But usually this is only because one of your parents has never been diagnosed with it.

There is currently no cure for Huntington's disease or any way to stop it getting worse.

Treatment and support can help reduce some of the problems that it causes.

Source: NHS

In 2007, Father ABC shot his mother.

He was convicted of murder because of reduced liability and detained under the Mental Health Act.

It was suspected then that he might be suffering from Huntington's disease, a deadly neurological condition.

Symptoms of the disease may include: mood swings and personality changes, difficulty concentrating and memory loss; depression; stumble and clumsiness; involuntary jerking or nervous movements of the limbs and body; problems swallowing, speaking and breathing; difficulty moving.

Four months after the birth of her daughter, who is now 9 years old, ABC was accidentally informed about the condition 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 sooner or later.

Her daughter has not yet been tested, but she will have a 50 percent chance of gene transfer.

ABC told the BBC that it would undergo a genetic test and terminate pregnancy instead of risking that the child would inherit the disease and would have to look after a seriously ill parent.

Disclosure of personal data without the consent of the patient may be justified to prevent exposing others to the risk of death or serious harm.

At that time, ABC and her father reportedly had NHS family therapy. ABC argued that there was an obligation to protect her mental or physical well-being.

This is the cornerstone of the doctor / patient relationship, but it is not absolute.

If ABC wins her case, it would significantly change patient confidentiality rules and raise questions about potential care obligations for family members after genetic testing.

The ABC case was first raised before the High Court in 2015, when the judge ruled that a full trial should not take place.

The judgment states that ABC "had no reasonable duty of diligence".

However, in 2017, the appellate court reversed the decision and stated that the case should be considered.

The ABC case was first raised before the High Court in 2015, when the judge ruled that a full trial should not take place. The judgment states that ABC "had no reasonable duty of diligence". However, in 2017, the appellate court reversed the decision and stated that the case should be considered

St George & # 39; s Healthcare spokesman NHS Trust said: "This case raises complex and sensitive issues regarding conflicting interests between the duty of care and the duty of confidentiality.

"The court will rule on these matters during the trial."


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