I have worked in Huntington’s disease research for many years, so I followed with interest and a certain amount of apprehension the news in November 2019 that a woman who had inherited Huntington’s disease was suing the NHS. The story was reported widely across the media including the BBC, the original news article is available here.
Huntington’s disease is a neurodegenerative condition which affects approximately 1 in 12,000 people and is caused by a faulty gene. The disease causes cognitive, psychiatric and motor problems and leads to fatality ten to fifteen years after clinical diagnosis. Due to the genetic nature of the condition, if you carry the faulty gene, there is a fifty percent change that you may pass the disease causing gene on to your children.
The legal case rests on the corner stone of individual patient confidentiality. The woman (termed ABC to protect her identity) brought a legal case against three NHS trusts arguing that they had a duty of care to tell her about her father’s diagnosis of Huntington’s disease. The case is further complicated by the fact that the father’s diagnosis was suspected after he killed the mother of ABC who brought the legal challenge.
After the father tested positive for the gene that causes Huntington’s disease he was clear that he did not want his genetic status disclosed to his daughter as he feared she would abort her unborn child or harm herself. His requests were upheld and due to individual patient confidentiality his daughter was not told about her risk of developing Huntington’s disease.
The claimant, ABC, discovered her father’s diagnosis four months after giving birth. The claimant has now had the genetic test for the condition and has tested positive. Therefore, her child now has a 50% chance of inheriting the gene for the fatal condition.
ABC says that she would have had an abortion if she had known about the potential risk to her child and argues that there was a duty of care among medical professionals to her to reveal her risk of Huntington’s disease, given her father’s diagnosis. If ABC were to have won the case, this would have triggered a major change to the corner stone of individual patient confidentiality. Genetic test results are treated as highly confidential information and this information is not shared with family members without explicit consent.
ABC’s case against three NHS trusts was unsuccessful, the High Court ruled that the decision not to tell ABC about her father’s diagnosis was supported by a “responsible body of medical opinion”. The BBC news article on the results of this case can be found here.
I found following this case incredibly interesting. It brought back memories from studying Philosophy and Ethics at A-Level in my school days. There are many ethical challenges associated with Huntington’s disease and I feel that we need more informed debate and discussion about these emotive issues, which often only crop up in challenging and difficult circumstances.
If the case had been successful it would have led to significant changes in the way that patient confidentiality is managed. The very nature of genetics means that you share various genetic information with your parents. So should there be a requirement to share important information with the rest of your family? The issue of sharing your personal genetic information with family members undoubtedly sparks many ethical and moral questions. However, this case was brought on legal grounds and, the claimant ABC was unsuccessful in her legal challenge. But, despite this, the case has highlighted important issues. The challenges faced in the general public understanding of Huntington’s disease and societal challenges and stigma which are still associated with Huntington’s disease. Finally, these challenges are very personal and everyone will have their own views and opinions, but this case highlights important societal, ethical, moral and legal questions in relation to Huntington’s disease which I believe require further discussion and debate.