NIPT (Non-Invasive Prenatal Testing) WALES: Understanding and Improving the New Landscape of Prenatal Screening
In April 2018 a new kind of test called Non-Invasive-Prenatal Testing (NIPT) became part of the normal NHS care that is offered to women in Wales when they are pregnant.
Women in Wales are the first group to be offered NIPT as part of normal pregnancy care, because it is not yet being offered in England, Scotland or Northern Ireland in this way. Like other tests that are offered to women during pregnancy, NIPT is used to tell women whether they have a very 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 it there is no risk that the pregnant woman or their baby will be harmed when it is used. NIPT can also tell women about the health of their baby at a very early stage of pregnancy, and the test can be taken at any time during the pregnancy, up until birth.
Even though NIPT is a very good test, it is not perfect. When results come back and say that the baby has one of the conditions tested for, there is a chance that the test could be wrong. If women want to know for sure, they must have another kind test called amniocentesis. Amniocentesis can tell for certain if the baby has the condition or not, but there is a small chance that the women will lose her baby because of that test.
NIPT is not just being offered through the NHS in Wales. Women can also buy an NIPT test directly 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 women must have had another test first).
Private tests can also be used to tell women 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 pregnancy (in the NHS NIPT is used when women are about twelve weeks pregnant, in private clinics NIPT can be used from when they are about ten weeks pregnant).
Private NIPT tests also allow women to test for some rare and less well-understood genetic conditions. Because NIPT is so new, we do not have much information on what pregnant women in Wales, their midwives, and other people involved (like women's partners, or hospital doctors) really think about the test.
We do not know what is has been like for them to use NIPT in the NHS for the first time and there are no clear rules that can be used to help NHS staff give the NIPT tests to women in a way that suits everyone best. We also do not know exactly how private NIPT tests might change pregnant women's NHS care.
This project will be carried out by a team of research staff from xxx University who are working with midwives from NHS Wales. It will help to answer these important questions by working closely with patients and their 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 women talk about NIPT, and by talking directly to women, midwives and other people involved in NIPT.
Details on how many people use the test in the NHS and in private clinics will also be collected. The project team will work very closely with patients midwives and doctors to understand what matters most to them, and build some rules to help guide the way NIPT is spoken about and used in Wales. The research team will also work with the same groups of people to design a tool which can help make sure these rules are followed in practice.