The Nuffield Council on Bioethics is seeking views on the ethical issues raised by the increasing availability and use of non-invasive prenatal testing (NIPT).
NIPT can be carried out by means of a simple blood test from 10 weeks of pregnancy. It uses cells of the placenta that circulate in the mother’s blood to look at the unborn baby’s DNA. It can be used to estimate the chance that the baby has a chromosomal abnormality such as Down's Syndrome, or to test for other genetic conditions such as achondroplasia. NIPT is available through private clinics and in some NHS hospitals as part of research. The Government is considering whether NIPT should be offered more widely on the NHS to pregnant women whose babies are found to be at high risk of having Down's Syndrome, Patau Syndrome or Edwards Syndrome.
“Although NIPT offers many benefits compared to previously available tests, there are important practical and ethical issues to consider as it becomes more widely available,” said Tom Shakespeare, Chair of the Nuffield Council’s working group on NIPT and Professor of Disability Research at the University of East Anglia. “People are worried, for example, that women might feel expected or pressured to have NIPT for Down's Syndrome because it is risk free, or that they will not realise what they are being tested for.”
To gather views and evidence, today the Council has published questionnaires for individuals and organisations with an interest in NIPT.
“We want to know what people think about this type of testing potentially being introduced as part of routine NHS care and the wider implications of increased uptake of NIPT, for example for people living with genetic conditions,” said Professor Shakespeare. “We would also like to hear about people’s views and experiences of how NIPT is or should be provided, including what kind of information and counselling should be offered to potential parents.”
The Council is also interested in how NIPT might be used in future. As the technology develops, NIPT may allow pregnant women and their partners to test their unborn babies for a wider range of genetic conditions, including those that develop later in life, and to find out about non-medical information relating to behaviour and physical appearance. It is also possible that NIPT could be used to carry out ‘whole genome sequencing’, which would reveal the complete genetic make-up of the baby. The Council is interested in views about what genetic information, if any, parents should and should not be allowed to find out about their unborn baby using NIPT in future.
The questionnaires are open to anyone and the Council would particularly like to hear from women who are or have recently been pregnant and their partners, healthcare professionals such as midwives and genetic counsellors, people with genetic conditions and their families, and academics working in the field. Responses will help to inform the Council’s inquiry on non-invasive prenatal testing. The findings and recommendations will be published around the end of 2016.
Notes to editors
- The closing date for responses to the questionnaires is: 25 July 2016
- Contact: Ranveig Svenning Berg, Communications Officer, Nuffield Council on Bioethics firstname.lastname@example.org / 020 7681 9619