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Huntington's disease: Woman who inherited the gene sued NHS



  A picture of an unidentified pregnant woman in a hospital gown

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A woman suing a London NHS Trust for failing to disclose her father's diagnosis of Huntington's disease was, before she had her own child.

She only discovered that he carried the gene for the degenerative, incurable brain disease after her daughter was born.

The woman then found that she too had the faulty gene, which means that her daughter has a 50% chance of having it.

The NHS said the case raises competing due diligence and secrecy obligations.

The applicant is referred to as the ABC to protect the identity of her nine-year-old daughter.

50:50 Chance

The facts are tragic. In 2007, ABC's father shot her mother and killed her.

He was convicted of reduced responsibility for manslaughter and detained under the Mental Health Act.

It has been suggested that he suffers from Huntington's disease, the deadly neurological condition that increasingly destroys brain cells.

Huntington affects movement, cognition and typically causes altered behavior and often aggression.

When his diagnosis was confirmed in 2009 by doctors at the St. George's NHS Trust, ABC's father made it clear he did not want his daughter being informed. She had told him that she was pregnant.

He told the doctors he was afraid she might kill herself or get an abortion.

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The case is being negotiated in the Royal Courts of Justice in central London

Four months after the birth of her daughter, ABC was accidentally informed about her father's condition.

She was tested and found out that she had inherited the HD gene, which means she will eventually develop the disease.

Her daughter has not been tested, but has a 50-50 chance of inheriting her.

Serious Damage

The woman claims that St. George's NHS Trust owed her due diligence to tell her about her father's diagnosis because the doctors there knew she was pregnant.

ABC says she would have received a genetic test immediately and stopped the pregnancy instead of allowing her daughter to take the risk of inheriting the disease or to care for seriously ill parents.

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The St. George NHS Trust operates hospitals and clinics in southwest London

At the time, ABC and her father were treated by the NHS as family-friendly, which is why she argued that there was an obligation to protect their mental or physical well-being.

This is a cornerstone of the doctor-patient relationship, but it is not an absolute criterion.

Disclosure of personal information may be warranted without the consent of a patient to prevent others from being at risk of death or serious harm become .

Huntington's disease

  • About 8,500 people in the UK suffer from Huntington's disease and another 25,000 suffer from old age.
  • It is a rare hereditary disease that damages certain nerve cells in the brain.
  • Huntington's disease in general affects people of the best age (between 30 and 40 years) and patients die about 1
    0 to 20 years after onset of symptoms.
  • Some patients describe Parkinson's, Alzheimer's and motor neurone disease as one disease.

This case was first discussed at the High Court in 2015, when a judge ruled that a full hearing should not take place.

The verdict states that ABC is not responsible for "reasonable due diligence".

But in 2017, the Court of Appeal overturned that ruling and said the case should be brought to trial.

When ABC wins the exam In this case, this would result in a significant shift in patient confidentiality policies and raise questions about the potential duty of care for family members after genetic testing.

Emily Jackson, a professor of law at the London School of Economics, said, "If a patient does not want her doctor to tell her children about her final diagnosis or HIV status, the doctor should of course respect the patient's trust

"The complicating factor with a The genetic diagnosis is not just information about the individual patient, but it also becomes clear that his or her relatives are at risk.

"In such circumstances and if the relative could respond to this information, should the duty of the physician be extended to the close family members of the patient?"

A spokesman for the St. George's Healthcare NHS Trust said, "This case raises complex issues and throws up issues regarding competing interests between due diligence and confidentiality."

"It's a matter for the court to decide the process over these issues. "

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