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Huntington's disease: Woman who inherits gene sues NHS

  Image of unidentified pregnant woman in hospital gown Copyright
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A woman sues the London NHS for not revealing that her father was diagnosed with Huntington's disease, to have her own child.

She discovered that she was carrying the gene for degenerative, incurable brain disorder after her daughter was born.

Then the woman realized that she also carried the defective gene, which means her daughter has a 50% chance to have it.

The NHS stated that the case raises a competitive duty of care and a duty of confidentiality.

The plaintiff is known as ABC to protect the identity of his daughter, who is now nine.

50:50 chance

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

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

It was suspected that he may be suffering from Huntington's disease, a fatal neurological condition which progressively destroys brain cells.

Huntington influences movement, knowledge, and usually causes altered behavior and frequent aggression.

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

He told doctors that he feared she might commit suicide or have an abortion.

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The case is heard at the Royal Courts of Justice in central London

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

It has been tested and found to inherit the Huntington gene, which means that it will eventually develop the disease.

Her daughter has not been tested, but there will be a 50:50 chance of inheriting her.

Serious harm

A woman claims that the NHS Trust of St. George owed her an obligation to take care of telling her father her diagnosis, given that the doctors there knew she was pregnant.

ABC says it would immediately do a genetic test and terminate the pregnancy instead of allowing its daughter to risk inheriting the disease or having to care for a seriously ill parent.

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The St George's NES Trust operates hospitals and clinics in south-west London

At this time, ABC and her father were undergoing family therapy organized by the NHS, so she claimed that she had an obligation to protect her mental or physical well-being.

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

Disclosure of personal information without the consent of a patient may be justified in order to prevent other people at risk of death or serious harm. ,

Huntington's disease

  • About 8,500 people in the UK have Huntington's disease and another 25,000 will develop it when left behind
  • This is a rare hereditary disease that damages certain nerve cells in the brain
  • Huntington's disease generally affects people in their prime ̵
    1; in their 30s and 40s – and patients die about 10 to 20 years after the onset of symptoms.
  • Some patients describe it as Parkinson's, Alzheimer's disease and a motor neuron converted to one

This case was originally disputed in the Supreme Court in 2015, hen a judge decides that they should be held fully heard.

The decision stated that ABC did not owe a "reasonable disputed duty of care".

But in 2017, the Court of Appeal reversed that decision and stated that the case should go to court.

If ABC wins In this case, it will result in a major change in the rules governing patient confidentiality and raise questions about the potential duty of care owed to family members after genetic testing.

Emily Jackson, Professor of Law at the London School of Economics, said: "If the patient does not want the doctor to tell their children about her terminal diagnosis, for example, or her HIV status, then of course the doctor must respect the trust

"The complicating factor with a genetic diagnosis is that it is not only information about the individual patient, but also reveals that his or her loved ones are at risk.

"In such circumstances, and where the relative can act upon this information, should the physician's obligation be extended to the immediate family members of the patient?"

A spokesman for the St. George Health NHS Trust said: "This case raises complex and sensitive issues regarding competing interests between the duty of care and the obligation of confidentiality.

" The court will decide on these issues during process. "

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