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

6 March 2017
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. 

Ban early pregnancy blood test to curb abortion of baby girls, ethics body demands
The Telegraph |  1 March 2017
Down's test 'used to choose gender': Warning checks for the condition are driving an 'arms race' to create the perfect baby
Mail Online |  1 March 2017
New pregnancy testing technique needs limits says ethics body
Nuffield Council on Bioethics (press release) |  1 March 2017
Non-invasive prenatal testing: ethical issues
Nuffield Council on Bioethics (report) |  1 March 2017
Women warned about private Down's syndrome tests
BBC News |  1 March 2017
1 June 2021 - by Michaela Chen 
A long-running court case over non-invasive prenatal testing patents has been settled...
4 November 2019 - by Emma Laycock 
The US National Council on Disability (NCD) has published a new report calling for greater oversight of genetic testing, particularly prenatal testing...
24 September 2018 - by Rikita Patel 
Prenatal tests offered by private UK clinics are misused for sex-selection and could lead to abortions of female fetuses, according to a BBC investigation...
13 November 2017 - by Dr Barbara Kramarz 
A new prenatal screening method for Down's syndrome, Edwards syndrome and Patau syndromes is safer, more reliable and cheaper than existing approaches, a study has found...
4 September 2017 - by Dr Rachel Huddart 
Current prenatal chromosome screening tests could miss rare chromosomal abnormalities and lead to inaccurate results...
7 November 2016 - by Dr Rachel Huddart 
A more accurate and safer prenatal test for Down's, Edwards' 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...
3 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...
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