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Huntington's disease: Woman inheriting gene sues NHS



  A picture of an unidentified pregnant woman in a hospital dress

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A woman sues a London NHS trust for not revealing that her father had been diagnosed with Huntington's disease before she got her own child.

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

The woman then found that she also carried the wrong gene, which means her daughter has a 50% chance of getting it.

The NHS said the case increased competing duty of care and confidentiality.

The complainant is known as ABC for protecting the identity of her 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 murder for diminished responsibility and arrested under the Mental Health Act.

It was suspected that he could be affected by Huntington's disease, a deadly neurological condition that gradually destroys brain cells.

Huntington's affect movement, cognition and usually cause altered behavior and often 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 the doctors that he feared she might kill herself or have an abortion.

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

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

She was tested and found that she had inherited Huntington's gene, which means that she will eventually develop the disease.

Her daughter has not been tested, but will have a 50:50 chance of inheriting it.

Serious Injury

The woman claims that St. George's NHS Trust owed her a duty of care to tell her father's diagnosis, given that doctors there knew she was pregnant.

ABC says that she would have had a genetic test immediately and would have terminated the pregnancy, rather than allow her daughter to risk inheriting the disease or have to take care of a seriously ill parent.

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St George's NHS Trust runs hospitals and clinics in south west London

At that time, ABC and her father underwent family therapy organized by the NHS, so she argues that there was an obligation to protect her psychological or physical well-being.

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

Disclosure of personal information without the patient's consent may be justified in preventing others from being at risk of death or serious injury.

Huntington's disease

  • About 8,500 people in the UK have Huntington's disease and another 25,000 will develop it when they are older
  • It is a rare hereditary disorder that damages certain neurons in the brain
  • Huntington's generally affects people in their prime ̵
    1; in the 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 and motor neuron disease rolled into a

This case was argued first at the Supreme Court in 2015 when a judge decided that a full hearing would not proceed.

The verdict stated that there was "no reasonably contentious duty of care" that ABC owes.

But in 2017, the court revoked the decision, saying that the case should be tried.

Should ABC win cases, it would trigger a major change in the patient's confidentiality rules and raise questions about the potential duty of care that family members owe after genetic testing.

Emily Jackson, a law professor at the London School of Economics, said: "If a patient does not want her doctor to tell her children about her terminal diagnosis, for example, or her HIV status, it is obvious that the doctor should respect the patient's trust. "

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

"In such circumstances, and where the relative could act on that information, should the physician's obligation be extended to the patient's close family members?"

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

" It will be for the court to assess these issues during the trial . "

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