Several people have asked me recently why I offer NIPT. These tests (non-invasive prenatal tests) have become a significant part of antenatal test provision in the last few years. They are available under a range of trade names including The SAFE Test, Harmony. Panorama, NIFTY and many more. They are now widely accepted internationally and are validated (considered reliable) for trisomy 21,18 and 13 (Down’s , Edward’s and Patau’s syndromes). I offer NIPT in Surrey and Sussex, usually during a home visit.
These tests work by examining fragments of the baby’s DNA found in a blood sample taken from the mother’s arm. This means that it is much more accurate than the combined test which is routinely offered to women in the UK by the NHS. The combined test makes assumptions based on the mother’s age, the nuchal (back of the neck) measurement and hormone levels and compares these to avaerage ranges. The more “average” you are, the lower the chance will be estimated to be. NIPT looks at the baby’s DNA, so it is not skewed by averages or maternal age. It is the baby’s chromosomes that matter and that is what NIPT looks at.
I decided to offer these tests after my experiences working with women over the last five years as these tests have become more widely available. So many women I talk to have been given very poor quality information. Many have not understood that it is a screening test and so the result is not certain – there are tests reported as “high chance” when the baby is not affected by the condition and NIPT will not identify every affected baby. Only two weeks ago I had contact with a women who had booked a termination based on her NIPT result. She believed that her baby had Edwards syndrome. It had not been explained that this could be a “false positive” result. Having understood this, she had an invasive test and learned that her baby is NOT affected. That misunderstanding could have cost the life of a healthy baby.
Other people have contacted me for advice after having an “expanded” NIPT which is now offered by several companies. This offers results relating to a number of much rarer conditions, and in some cases chromosomal variants which are not known to be of any significance to the baby’s life. Many of these results are of very questionable validity, causing a great many people huge anxiety when there is no actual issue for the baby. An unusual result for one of these, in my experience, is often emailed to the women telling her to “seek advice” but not offering any advice, information or support. I feel it is unethical to undertake testing unless you offer good quality pretest information and have the knowledge and skills to explain and support the client afterwards.
NIPT is not always the best test to have. There are some circumstances in which it can give false reassurance or where it is unlikely to be reliable. There are times when you may be wasting both time and money doing NIPT. Do you actually want the information it can provide anyway? It is important to consider all aspects before making a decision. It is the practitioner’s role to highlight issues to you that should be considered.
This is why I offer NIPT in Surrey and Sussex. I am committed to sharing high quality information, so that parents have the knowledge and opportunity to make the decisions which they believe to be correct for them. I support parents to decide if they want the information offered by such tests, and if they have the test I support them in whatever follows. Please see some frequently asked questions about the services I offer.
I am not alone in my concerns. Nuffield Council on Bioethics have been raising these issues repeatedly over the last few years, and the Care Quality Commission have now started to take interest in services offering such testing. It will take several years before the effect of regulation mean that all providers will be reliably offering high quality care and information.
If you are interested in NIPT in Surrey or Sussex please get in touch to discuss your needs and concerns. I also sometimes work in parts of Kent, Hampshire, Croydon and London. I use The SAFE Test (a version of IONA) and am happy to discuss the reasons for this choice with you. My service includes a detailed discussion in advance of the test, the test itself and a full explanation of the result. In the case of a “screen positive” result, suggesting that the baby is affected by one of the conditions, I will work to help you make a decision about what to do. I can arrange further care either privately or through the NHS.
A home visit for NIPT in Surrey or Sussex, with detailed discussion and information before and afterwards is £345.