Subscribe to the BioNews newsletter for free

Login
Advanced Search

Search for
BioNews

Like the Progress Educational Trust on Facebook


Preimplantation Genetic Diagnosis: The Who, the What, the Why and the How


 

Use of prenatal tests 'must be limited', say bioethicists

06 March 2017

By Emma Laycock

Appeared in BioNews 891

The Nuffield Council on Bioethics has called for a ban on using early prenatal testing to find out the sex or sequence the whole genome of the fetus.

Non-invasive prenatal testing (NIPT) is a simple blood test which analyses fetal DNA in a pregnant woman. From 2018, the NHS will offer the test for high-risk pregnancies at nine weeks to screen for Down's syndrome and other conditions (see BioNews 876).

Professor Tom Shakespeare of University of East Anglia, chair of the Council's Working Group on NIPT, said: 'We support the introduction of this test for Down's syndrome on the NHS next year, so long as it is accompanied by good balanced information and support. But, if the test is used without limits for other kinds of genetic conditions and traits, it could lead to more anxiety, more invasive diagnostic tests, and could change what we think of as a healthy or normal baby.'

The report also cites the right of a future child to find out their own genome for themselves.

'That's why we are calling for a moratorium on its use in sequencing the whole genome of the fetus. We also strongly believe there should be a ban on its use to find out the sex of the fetus, as this could lead to sex-selective abortions,' said Professor Shakespeare.

The council recommends that NIPT should generally only be used to find significant medical conditions that would affect a baby at birth or in childhood. They also warned that many clinics which offer genome sequencing are unable to properly explain the significance of the information provided by the tests.

Dr Louise Bryant of the University of Leeds and a member of the Council's Working Group on NIPT, said: 'The information currently provided to women and couples by the private sector is frequently incomplete, unsubstantiated, inaccurate or misleading, and sometimes uses emotive language.'

'Parents should also be provided with an up-to-date picture of what life is like for people with the condition,' said Dr Bryant. 'In some cases it can have minor effects on people's lives, whilst in others the effects are more significant. Women and couples must get balanced information and support to help them make decisions that are right for them.'

Other experts have deemed the Nuffield Council's report as 'poor quality' and 'disappointing'.

'The proposed restriction to neonatal and childhood onset conditions excludes conditions such as early-onset dementia and neuromuscular disorders, which can be extremely serious and can cause enormous amounts of pain to families,' said Mr Alastair Kent, Director of Genetic Alliance UK.

The British Pregnancy Advisory Service said the report 'seems permeated by a mistrust of women and the reproductive choices they make'.

NIPT is already given by the NHS to women at high-risk of passing on genetic conditions, such as cystic fibrosis. The introduction of NIPT next year to estimate the chance of Down's syndrome should mean fewer false results and less invasive diagnostic testing, which carries a small risk of miscarriage. 

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

04 September 2017 - by Dr Rachel Huddart 
Current prenatal chromosome screening tests could miss rare chromosomal abnormalities and lead to inaccurate results...
06 March 2017 - by Nick Meade 
The Nuffield Council of Bioethics' new report on non-invasive prenatal testing is unnecessarily negative and encroaches on women's reproductive choices...
06 March 2017 - by Matthew Thomas 
Dr Kat Arney leads a fascinating and wide-ranging discussion of genetic testing – from testing for cancer genes to whether your child's DNA can predict their future sporting ability...

07 November 2016 - by Dr Rachel Huddart 
A more accurate and safer prenatal test for Down's, Edward's and Patau's syndromes is to be offered by the NHS from 2018, it has been announced...
24 October 2016 - by Craig Macpherson 
Several online companies now offer non-invasive prenatal testing for Down's syndrome. While there are some protections for consumers, they are currently insufficient...
03 October 2016 - by Victoria Woodham 
The introduction of non-invasive prenatal testing in the NHS screening programme for pregnant women may seem like a no-brainer, but it is based on outdated ideas of what life is like for people with Down's syndrome and their families...
30 August 2016 - by Dr Ainsley Newson 
Jane Fisher and Lyn Chitty highlight in BioNews 864 that it's been almost nine months since the UK National Screening Committee recommended an 'evaluative implementation of NIPT into the NHS's antenatal screening programme – a recommendation that still awaits ministerial decision...
15 August 2016 - by Jane Fisher and Professor Lyn Chitty 
A central tenet of prenatal testing is to promote reproductive autonomy by providing women with information that can assist in pregnancy management. Bringing NIPT into the NHS will improve an established screening programme...

HAVE YOUR SAY
Be the first to have your say.

You need to or  to add comments.

By posting a comment you agree to abide by the BioNews terms and conditions


- click here to enquire about using this story.

Published by the Progress Educational Trust

CROSSING FRONTIERS

Moving the Boundaries of Human Reproduction

Public Conference
London
8 December 2017

Speakers include

Professor Azim Surani

Professor Robin Lovell-Badge

Sally Cheshire

Professor Guido Pennings

Katherine Littler

Professor Richard Anderson

Dr Sue Avery

Dr Elizabeth Garner

Professor Allan Pacey

Dr Anna Smajdor

Dr Andy Greenfield

Philippa Taylor

Dr César Palacios-González

Fiona Fox

Sarah Norcross

EARLY BIRD DISCOUNT
if you book now


BOOK HERE

Good Fundraising Code

Become a Friend of PET HERE and give the Progress Educational Trust a regular donation