Ìý
ONCE upon a time, a doctor’s consulting room was as safe as a confessional. You could say what you liked confident that, barring very exceptional circumstances, it would go no further. No more. Two legal cases, one in Germany and one still ongoing in the UK, show how the limits of patient confidentiality are being tested, and how this challenges long-established medical norms.
Advertisement
At issue is how to define a patient in an era of genetic testing. If a test shows that I carry a disease-causing gene, that may be relevant to other members of my family. If I refuse to tell them, should my doctor?
That is the nub of a trial coming up at the High Court in London in November, in which a woman is for not informing her. Huntington’s is a fatal, incurable neurodegenerative disorder caused by a mutation in a single gene. Every child of an affected parent has a 50 per cent chance of inheriting the mutation.
The woman argues that, had she known her father’s diagnosis, she wouldn’t have given birth to her daughter, who is now herself at risk of Huntington’s. Currently, in the UK as in many other countries, doctors are legally obliged to respect the confidentiality of patients unless they consent to their information being shared.
Guidelines issued by professional organisations do acknowledge that situations can arise where a doctor has a duty of disclosure to third parties even in the absence of consent – notably when not sharing information could result in death or serious harm. The High Court trial will test whether that duty of disclosure should also be recognised in law.
That could bring some much needed clarity to the area, but also create new problems. What if I test positive for a disease-causing gene variant and my family members, who didn’t consent to be tested themselves, don’t want to know they are at risk?
This question was raised by a German case in which a woman sued a doctor for telling her that her ex-husband had Huntington’s, meaning that their two children were at risk. The doctor acted with the consent of his patient, the ex-husband, but the woman’s lawyers argued that the information was useless to her because the condition can’t be cured and the children were too young to be tested anyway. Knowing her ex-husband’s diagnosis without being able to act on it, the woman claimed, had sent her into a reactive depression and left her unable to work.
The German case wound its way through several courts before , in 2014, in favour of the doctor – despite the fact that, unlike in the UK, the right not to know is legally protected in Germany, with respect to genetic information.
Balancing these various rights isn’t easy. Huntington’s is a clear-cut case, medically: if you have the mutation, you will develop the disease, assuming you live long enough. That is unusual. In most cases, a gene test is likely to reveal only an increased risk of disease. The real problem is that the law is black-and-white, while predictive medicine is all about grey.
