A London hospital trust finds itself in the middle of what could be a landmark case with regard to rules governing patient confidentiality. The case involves a woman – who cannot be currently named for legal reasons – who is suing doctors because they failed to tell her about her father’s fatal hereditary disease before she had her own child. The father carried a gene for Huntington’s Disease – a degenerative, incurable brain condition – and now, after giving birth, the woman found out that the daughter may have a 50% chance of having the disease.
The woman says she would have had an abortion had she known about her father’s condition, and is suing the doctors who failed to tell her about the risks she and her child faced. It is the first case in English law to deal with a relative’s claim over issues of genetic responsibility.
Anna Middleton, head of society and ethics research at the Wellcome Genome Campus in Cambridge said in an interview to The Guardian, “This could really change the way we do medicine, because it is about the duty that doctors have to share genetic test results with relatives and whether the duty exists in law”.
The problem with this case is that it could set a complicated legal precedent. A lot of diseases today, including cancer and dementia, have genetic links to them. So with this case, the question arises of whether or not patient-doctor confidentiality must be respected in its strictest form or whether doctors should be allowed to talk about tests and genetic problems identified in relatives.
To me, as much as possible, patient confidentiality must be respected in the strictest form unless there are certain risk factors associated – like the possibility of self-harm or harm to others, for example. In the case of genetic diseases like Huntington’s, which are known to be passed on from one generation to another and diseases in which genetics plays what is possibly the biggest role in causation, I feel like the patient must know about the risks involved – especially in this case.
With other diseases where genetics has a role to play but may not be the main causative factor, the patient must be asked about any history of genetic illness within the family and if yes, the doctor must be open and say that while there is a risk that the illness could spread to the next generation, the chances are minor.
A little more background on this case will make things clearer to some degree. The woman’s father shot and killed his wife in 2007 and was convicted of manslaughter. Two years later, doctors at St George’s Hospital in London found that he had Huntington’s disease and asked him to tell his daughter about his condition and her risk of developing it. But he refused to do so because he thought she might abort the child she was carrying. The doctors accepted his decision.
In April 2010 the woman gave birth to a daughter. Four months later, she learned about her father’s condition. She was also subsequently diagnosed as having the disease and has had to cope with the impact of the disease ever since, in addition to the knowledge that her daughter has a 50% chance of succumbing to it.
In this case, I personally think that the answer is clear. The doctors should have told the daughter about the condition especially in view of the fact that she was pregnant. There was clearly another human being who was affected by the decision not to share this information, and since April 2010, there have been two.
However, changes to the confidentiality laws may have its own problems.
Middleton goes on to say, “Enshrining that in law actually gives doctors more protection, but how much effort should a clinician make in chasing up relatives? And those relatives might be unhappy to be tracked down and given unwelcome information – for example, that they possess a gene that predisposes them to breast cancer. You cannot take back that information once you have given it.”
The case itself has had ups and downs, initially being struck down before a court of appeal reinstated it – with the case being set for trial next November. It is however clear, whatever the outcome is of this case, that some changes in medical practice are now inevitable as a result of this case and the debate it has sparked.
Last modified: 4th December 2018