Non-invasive prenatal testing: ethical issues

Non-invasive prenatal testing (NIPT) is a technique that can be used to test a fetus for genetic conditions and variations, such as Down’s syndrome. It involves taking a blood sample from the pregnant woman at around 9 or 10 weeks of pregnancy. NIPT is more accurate than some other screening tests, it carries no risk of miscarriage and, in some circumstances, NIPT can provide earlier results than current screening and diagnostic tests.

This report considers, at this early stage of its use, how NIPT could change the way we view pregnancy, disability and difference, and what the wider consequences of its increasing use might be. It considers views and evidence gathered from a wide range of people and organisations and from the academic literature. It sets out the potential implications of this technique for prenatal screening and testing for a range of genetic conditions and variations both in the NHS and in the private sector.

We suggest three general principles that should be adopted by policy makers:

1. The wider societal environment in which NIPT is provided and developed should be considered when developing policy relating to NIPT.
2. Pregnant women and couples should have access to NIPT within an environment that enables them to make autonomous, informed choices.
3. Efforts should be made to reduce any risks of significant harms posed by the growing use and development of NIPT.

Key recommendations include:

• Women and couples should be able to access NIPT to enable them to find out, if they wish, whether their fetus has a significant medical condition or impairment, but only within an environment that enables them to make autonomous, informed choices, and when steps are taken to minimise the potential wider harms of NIPT.
• NIPT should not normally be used to test whether a fetus has a less significant medical condition or impairment or an adult-onset condition; or to find out whether the fetus is the carrier of a gene for any kind of medical condition or impairment; or to reveal non-medical features of the fetus, including sex. NIPT for whole genome or exome sequencing of fetuses normally should not be offered.
• Professional guidance for health and social care professionals on the availability and provision of NIPT in the UK should be developed by relevant Royal Colleges and other professional bodies.

Project team