The Times yesterday reported on a clinical negligence claim, currently being heard in the High Court, in which a central issue relates to whether or not there is an obligation to tell a pregnant patient that a relative has been diagnosed with a genetic disorder.
The case involves a tragic series of events during which a patient’s father was diagnosed with Huntington’s disease, a genetic condition which, according to the NHS, generally becomes symptomatic in mid-life and is usually fatal within 15 – 20 years of symptoms starting. There is currently no cure.
The Claimant, a woman who was pregnant at the time and is known in the Court proceedings as “ABC”, is arguing that the NHS Trusts treating her father should have informed her about his diagnosis, which would have led to her being tested and making a decision to terminate her pregnancy.
It is reported, however, that her father was unwilling to have the diagnosis shared with his daughter and she was not told at the time. She later found out about the diagnosis, a few months after giving birth. She has since tested positive for the Huntington’s genetic disorder. Her child has not been tested and has a 50% chance of having inherited the disease.
The ethical implications of genetic testing are complicated because information about a patient’s genes can have important implications for their relatives but generally a patient’s medical records are kept confidential. The outcome of this case will no doubt add to the debate surrounding the use and confidentiality of genetic information.
While this is an unusual case, it also highlights a more general point regarding the value of antenatal testing for serious health conditions, which can inform parents’ decisions about whether to continue a pregnancy. Antenatal investigations typically include ultrasound scanning for abnormalities and, increasingly, fetal genetic screening tests. Where antenatal tests have been conducted (or advised upon) negligently and a child’s condition is not diagnosed until after birth, the parents may be able to bring a clinical negligence claim. Usually, the compensation claimed in those circumstances relates mainly to the costs of meeting the child’s additional needs which arise because of the disability, such as specialist education, equipment and therapies.