Deep disappointment as Down’s test rolled out despite concerns

The Department of Health has decided to roll out a new pre-natal test, despite serious concerns raised by a number of groups about how the implementation of this test will affect society.

For ten months, those with Down’s syndrome and their families have requested that they be properly consulted before the test was given approval. It is believed that the test will lead to an increase in the number of babies diagnosed with Down’s being aborted. 

The test will be introduced in 2018, prompting people with Down’s syndrome, their families, campaign groups and doctors to respond with deep disappointment, fearing it will 'screen out' the Down’s community. 
 

The value of life

The test's approval follows a consultation in September by the Royal College of Obstetricians and Gynaecologists (RCOG). The consultation stated that if the test is only offered to women at high risk of having a child with Down’s, a "more rigorous economic analysis has to be made that includes the lifetime costs of caring for children and adults with Down’s syndrome."

The consultation provoked strong criticism for attempting to calculate the cost of a human being.  

Over the weekend, 279 medical professionals signed a letter accusing the RCOG of "advocating that women with a prenatal diagnosis of Down's syndrome should end their pregnancy". 

The letter said: "We utterly reject the implicit premise that the value of a human being is based on their economic contribution to society."

What is NIPT? 

NIPT screens a pregnant mother's blood for tiny fragments of DNA. These fragments are then checked at between 11 and 14 weeks of pregnancy for abnormalities, such as Down's syndrome and Edward's syndrome.

The current pre-natal testing for the condition can take place from 12 weeks into the pregnancy. If the tests show a high change of a genetic condition then the mother also has the option to take an additional test which is 'more accurate', but involves injecting a needle into the womb.

This invasive test carries a 1% risk of miscarriage and a one in 1,000 risk of serious infection. The NIPT test is more accurate and non-invasive, therefore avoiding these risks. More people are thus likely to opt for the test, which is expected to lead to an increase in abortions for Down's syndrome. 
 

'Very disappointed'

In response to the test being rolled out, Lynn Murray of Don't Screen Us Out, which has actively been campaigning against its implementation, stated in a press release: 

"We are very disappointed that the Department of Health have approved the NIPT roll-out without consultation with the very group that this is going to have the biggest impact on, people with Down’s syndrome and their families. The Government has admitted itself that it has made no assessment of the impact this will have on the community of people with Down’s syndrome. The conditions of the UK Equality Act may not have been met.

"Furthermore, this roll-out is projected to result in an increase in the number of children with Down’s syndrome screened out by termination. The decision released today will have a massive impact on our community.

"We are also stunned by the unprofessional manner that the Department of Health have chosen to announce the news of the decision coming via comment to a Saturday newspaper rather than an official release on a working day."

Earlier this month, Don’t Screen Us Out delivered an open letter to Health Secretary Jeremy Hunt, signed by over 900 people with Down’s and their families. It asked Jeremy Hunt and his department to consult with the Down’s community before the screening is introduced.
 

'I am saddened'

Conservative Peer, Lord Shinkwin, who is himself disabled, said:

"I am saddened by the way this decision was taken. Ministers could have met with people with Down’s syndrome and their families and addressed their concerns before making the announcement. They chose not to and instead signalled to disabled people once again that they would be better off dead. 

"Such prejudice doesn’t fit with my Party’s proud tradition of social reform and the commitment to equality underpinning its ground-breaking Disability Discrimination Act. I hope we learn from this, so that we can really build a country that works for everyone."
 

A world without Down's

The ethical issues surrounding NIPT have gained media attention over the last several months. Last month, a documentary, 'A World Without Down’s

Syndrome', aired on BBC 2. Actress Sally Phillips, whose 11-year-old son Olly has Down’s, examined whether the use of non-invasive prenatal testing (NIPT) might eventually completely eradicate Down’s syndrome, a prospect she finds "chilling".

She said: "It's not just a film about [my son], it’s not just about Down’s syndrome either. It’s a film that asks the question - what kind of society do we want to live in, and who do we think should be allowed to live in it?"

Sally's documentary painted a positive picture of life with a Down's syndrome child, and the joy they bring to their families.