Woman would have terminated pregnancy

Ed Madden, BL, looks at a recent Scottish court case in which a woman claimed that had she been told that her unborn son had cystic fibrosis, she would have terminated the pregnancy

On February 6, 1995, a woman (JS) gave birth to a son at the Eastern General Hospital in Edinburgh. Tragically, he was born with cystic fibrosis. JS would later claim that had she been told that the foetus had the condition, she would have terminated the pregnancy.
In due course she brought an action in the Scottish Court of Session in which she alleged negligence on the part of those attending to her ante-natal care. In July 2009, the Court dealt with a preliminary issue – the duties that the Lothian Health Board, which had responsibility for the hospital, owed, or did not owe, to JS.
The Court was told that when she learned that she was pregnant in July 2004, JS was referred by her GP to Dr Farquharson, a Consultant Obstetrician at the Eastern General Hospital. She was sent a leaflet by the hospital prior to her attendance, headed ‘Cystic Fibrosis Carrier Testing for Couples’. The leaflet explained the condition and dealt with the issue in a question/answer format.
The leaflet went on to explain that in Britain, one person in 25 has a single cystic fibrosis gene, which is harmless. However, if a man and woman each carry such a gene, there is a one in four chance that their baby will have cystic fibrosis. This occurs in the case of approximately one in six hundred couples.
Questions and answers
Two questions and answers contained in the leaflet were in the following terms:
“What do I do if I would like to be tested?
“We can test to see if you and your partner are cystic fibrosis carriers. At the Ante-Natal Clinic we will take a mouthwash sample from you.
“With your appointment literature, you will find one specimen container. This is for your partner’s mouthwash sample…. Please bring your partner’s mouthwash sample with you to the Clinic.
“At the laboratory, the female sample will be tested first. If this is negative (you do not carry a cystic fibrosis gene), the male sample will not be tested.
“The result will be recorded as COUPLE NEGATIVE. If the female sample is found to be positive (you do carry a cystic fibrosis gene), the male sample is then tested. If this is found to be negative, the result is then recorded as COUPLE NEGATIVE. If however both female and male samples are found to be positive, the result will be recorded as COUPLE POSITIVE.
“This test can identify 85 per cent of cystic fibrosis carriers and we can then give you a negative or a positive result. If the result is positive we will contact you within 10 days.
“What happens next?
“If you and your partner are both found to carry a single cystic fibrosis gene, you will be offered genetic counselling, which will give you much more information about the disease.
“You will be offered amniocentesis or chorionic villus sampling, which can tell for certain if the baby has cystic fibrosis. If the result does show that the baby is going to have the disease, you may wish to consider termination of pregnancy.”
JS attended for her appointment at the hospital and there provided her own mouthwash sample. It was sent to the Western General Hospital, Edinburgh for testing. She was advised that it was found to be negative.
It would later transpire that the sample in fact demonstrated a positive result; however, the sample was of poor quality and the process should have been repeated.
Having been given the ‘all clear’, JS continued with the pregnancy. Following the birth of her son, it was established that the baby’s CF genotype was D508/DF508. It was also established that JS and her partner carried the cystic fibrosis mutation DF508 on one chromosome.
The Health Board told the Court that the cystic fibrosis screening test was carried out as part of a research study by the Human Genetics Unit of the University of Edinburgh. The unit was located in premises at the Western General Hospital.
The research was not funded by the Health Board and the person who carried out the analysis was not engaged by the Board either as an employee or on the basis of a contract for service. It was submitted that if a duty in relation to the testing was owed to JS, it was owed by the university and not by the Health Board.
Test proved positive
Giving her judgment in the case, Lady Justice Stacey said that JS had attended hospital having been referred by her GP for standard ante-natal care. She received the leaflet relating to cystic fibrosis from the hospital, and accepted the invitation to have testing. There was nothing in the leaflet which indicated that the analysis would be carried out by any body other than the hospital. It was clear from the leaflet that should the test proved positive, the hospital would arrange for further testing and the provision of information to the patient.
The leaflet did not indicate that the offer of the test was in any way unusual or some type of ‘extra’ not normally offered in maternity care at the time. Other expectant mothers in Edinburgh were offered the same test and had the analysis carried out by a person employed by the hospital. The matter was of great importance, as it was stated in the leaflet that a positive test might, after further testing, result in the patient being offered a termination.
The judge said that while the Health Board did not have control over the work of the university employee alleged to have been negligent, the issue was whether or not the hospital had assumed responsibility for the overall wellbeing of the patient. The action against the Board would be allowed to proceed on the basis of the Court’s finding.
Reference: [2009] CSOH 97.