Patient Confidentiality: a Difficult Case Surrounding Huntington’s Disease

Patient confidentiality is often seen as an absolute in the medical world. Many people believe that it should never be broken. Cases do exist that challenge this thought however, where the situation is not just black and white. ABC v. St. George’s Healthcare NHS Trust is a perfect example. A father was diagnosed with Huntington’s disease, but invoked his right to patient confidentiality and asked that his daughters not be notified. His doctor, as well as his daughter’s family therapist, respected his wishes and did not inform his children. One of his daughters went on to have a child, which was followed by her own Huntington’s diagnosis. She sued the medical professionals that kept her father’s diagnosis from her as she felt that she had the right to know about a disease that had the potential to affect her. She argued that she would have lived her life differently and not gotten pregnant had she known she was at risk of the neurodegenerative disease. Her case exemplifies the debate around patient confidentiality.

About Huntington’s Disease

Huntington’s disease is a progressive, neurological condition that sees the deterioration of the brain. It causes the loss of mental and physical functions. This disease is very rare, affecting three to seven of every 100,000 people. It tends to affect those of European ancestry, with diagnosis typically occurring from age 30 to 40.

The HTT gene is mutated in those with this condition, and it creates the instructions for the protein huntingtin. The exact purpose of this protein is unknown, but doctors believe that it is involved in the health of neurons. It accumulates in long chains due to the mutation and it will then bind to neurons which lose function and die. This gene is inherited in an autosomal dominant pattern, meaning only one parent has to pass down the mutated gene for a child to be affected.

Huntington’s symptoms fall into one of three categories: emotional issues, cognitive decline, or uncontrolled motor symptoms. The first form of symptoms may manifest as personality changes, mood swings, anxiety, depression, and impulsive behavior. Cognitive decline sees effects such as poor decision-making, forgetfulness, and issues with learning and retaining new information. The last category includes symptoms like twitching, shrugging, and issues with walking, coordination, and swallowing. Chorea, or uncontrolled movements, is one of the most common effects.

Genetic testing is the major method used to diagnose this disease, as people are typically aware that Huntington’s runs in their family. Once a diagnosis is obtained and symptoms begin, treatment is symptomatic. Anti-psychotic drugs or dopamine-depleting drugs are used to suppress chorea. Doctors may also prescribe anti-depressants, neuroleptics, and antiepileptic drugs.

ABC v. St. George’s Healthcare NHS Trust

The claimant, ABC, sued the defendants for adhering to patient confidentiality and not informing her of her father’s Huntington’s disease diagnosis. Her father was diagnosed after being subjected to a hospital order for the murder of his wife. The doctor that diagnosed him is one of the defendants, accompanied by the ABC’s family therapist.

ABC states that she should have been informed of her risk of Huntington’s disease; she would have lived her life differently had she known. Both defendants were aware of this risk, and they also knew that she became pregnant around the time of her father’s diagnosis. Not only was she at a heightened chance of this disease, but so was her unborn child. She only learned of the disease after a doctor mentioned it accidentally. It was this accident that encouraged her to get tested, which led to her diagnosis.

In 2017, this case was taken to the Court of Appeal. Mrs. Justice Yip has decided the case and used multiple considerations to make her decision. First, she decided to judge the defendants separately. She also made her choice based on the duty of care the defendants owed to the claimant. She found that the first defendant, the father’s doctor, did not owe her any duty of care. On the other hand, her family therapist did. They had a close, proximal relationship. Within this decision, she claimed that telling the claimant of her father’s diagnosis did not fall under the therapist’s duty of care. In the end, Mrs. Yip found that there was no breach of the duty of care to ABC.

This case shows the difficulty in deciding cases of patient confidentiality. It is often an issue that can be examined from multiple perspectives and seen in many different lights. While people may form their own opinions of this case, the final decision determined that the medical professionals were not negligent or unreasonable.

ABC v. St. George’s Healthcare NHS Trust will be examined and drawn upon for many years. Whenever patient confidentiality is brought up in the future, this case will be looked at. It proves that in a world where few things are absolute, patient confidentiality may be.

Find the original article here.


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