Personal views: Nuchal translucency—screening without consent
Authors: Josephine Venn-Treloar
Journal: BMJ (1998)

It was during a pregnancy four years ago that I became aware of nuchal translucency. As a doctor with postgraduate training in obstetrics, I thought that I would understand quite a lot about my obstetric care. 

During a scan I became aware that the ultrasonographer was spending a lot of time viewing round the back of the baby’s head. “I’m just measuring fluid around the back of the neck,” was the not unreasonable response to my question. It was only after the baby’s birth that I learnt what was being measured and studied. 

I realised how close I had been to the receipt of non-specific information from a test that I had not consented to. If the baby had had Down’s syndrome I could have been told and been troubled for the rest of the pregnancy. If the test was for research where the results were not given to the mother it means that considerable unnecessary scanning was being done without my consent. I have always said that I would not have an abortion in such circumstances and that I would not have antenatal tests unless they were designed to promote the health of me and the child. 

I am angry that this happened to me. I thought that ethical committees were supposed to regulate the way in which trials are conducted. Do they approve of multicentre trials in which patient consent is not considered? 

My experience has made me extremely wary of attending for an ultrasound test before the time when the information gained would benefit the baby. I believe that many mothers attend for ultrasound diagnosis, believing that the test is designed to confirm that the baby is well. It is only when they are presented with an abnormal scan result that they start to consider what it means. By that time they have already been offered advice on amniocentesis and are well on the way to an abortion. 

In at least one district the first contact that mothers have with hospital antenatal services is a letter inviting them to the 11 week nuchal translucency test. There is no counselling; it is simply called the first trimester scan. While most women attend for a cosy view of their healthy baby, few are well informed of the key purpose of the scan—namely, to detect Down’s syndrome and to decrease the live birth rate of children with this condition. I am told that the studies show that detecting and eliminating two babies with Down’s syndrome by screening programmes costs one “normal” baby who succumbs as a result of the programme. The loss of one normal baby is thought to be a price worth paying. 

My experience of being screened, without my knowledge, and despite my obstetric training, has heightened my awareness of the ethical issues which surround antenatal testing. Although nuchal translucency may have some scientific use, what are the ethical issues? Should society seek to eliminate undesirable members on the basis of health economics? Are mothers who attend for a health check on their baby being propelled towards a termination? There is a real need for screening programmes to be honest about their purpose and for mothers to be sure that they know why tests are performed and what therapeutic outcomes there may be. 

A dishonest approach will distance the service providers from many of those who are producing the next generation. They may not be medically trained but are devoted and loving parents. I have seen many people benefit from the richness of life that people with Down’s syndrome can bring. Yet we live in a country which finds devious means to eliminate people who might cost more than the average. If this is an acceptable situation we should be honest and tell the parents.