NEPTUNE

Non-invasive prenatal testing Wales: understanding and improving the new landscape of prenatal screening.

Non-Invasive-Prenatal Testing

In April 2018 a new test called Non-Invasive-Prenatal Testing (NIPT) became part of normal NHS pregnancy care in Wales. Like other tests offered during pregnancy, NIPT is used to tell people whether they have a high chance of having a baby with three different genetic conditions: Down’s syndrome, Edwards’ Syndrome and Patau’s syndrome. NIPT is different from other tests because it is very accurate, and there is no risk that the pregnant person or baby will be harmed. NIPT can tell people about the health of their baby at a very early stage of pregnancy, and the test can be taken any time during pregnancy, until birth.

Even though NIPT is a good test, it is not perfect. When results say the baby has one of the conditions tested for, there is a chance the test could be wrong. If people want to know for sure, they must have another test called amniocentesis. Amniocentesis can tell for certain if the baby has the condition, but there is a small chance the pregnancy will be lost because of that test.

NIPT is not just being offered through the NHS in Wales.  NIPT can also be purchased from a private clinic for about £400. In these clinics, NIPT is slightly different. Anyone can use NIPT at a private clinic (in the NHS people must have another test first).  Private tests can be used to tell people about the sex of their baby (in the NHS NIPT is not used in this way) and they can be used about two weeks earlier (in the NHS NIPT is used when people are about 12 weeks pregnant, in private clinics NIPT is used from when they are about 10 weeks pregnant). Private NIPT also allows people to test for some rare and less well-understood genetic conditions.

Because NIPT is new, we do not have much information on what women and other pregnant people in Wales, their midwives, and other people involved (like their partners, or hospital doctors) think about the test. We do not know what it is has been like for them to use NIPT in the NHS for the first time and we do not know how to help NHS staff offer NIPT tests in a way that suits everyone best. We also do not know how private NIPT tests might change people’s NHS care.

Public involvement

This project (NEPTUNE) will be carried out by a team of researchers from Cardiff University who are working with midwives from NHS Wales. It will help answer important questions by working closely with service users and care providers. It will build a detailed picture of how NIPT is being used and spoken about, and will do this by watching how midwives and pregnant people talk about NIPT, and by talking directly to pregnant people, parents, midwives and other people involved. Information on how many people use the test in the NHS and in private clinics will also be collected. The project team will work closely with service users, midwives and doctors to understand what matters most to them and to create guidance and tools to support best practice.