Don’t Screen Us Out

 In General, News

 

Government announces roll-out of new Down syndrome test that will likely see rise in abortions.

The number of babies with Down syndrome that are aborted is likely to increase following a decision announced by the Government.

People with Down syndrome, their families and campaign groups are very disappointed that a new prenatal test that is projected to lead to a profound increase in the number of children with Down syndrome screened out by termination, is going to be rolled-out by the Department of Health and Social Care, without responding to the very real concerns of those in the Down syndrome community.

The UK Government has announced plans to procure and roll out the Non-Invasive Prenatal Testing (NIPT) technique called ‘’cell-free DNA’’ (cfDNA) to all health boards in England.

Recently, an investigation by The Sunday Times found that the number of babies born with Down syndrome has fallen by 30% in the small number of NHS hospitals that have introduced the new form of screening.

This situation is set to accelerate as the Government intends to roll out the test across England. The National Institute for Health and Research RAPID evaluation study forecasts that the proposed implementation will result in more babies with Down syndrome being identified each year, and based on the current 90% of parents with a diagnosis that terminate a pregnancy, this is projected to result in more terminations where babies have the condition.

In its 2017 report on NIPT, the Nuffield Council of Bioethics warned that the UK National Screening Committee should take better consideration of the consequences, some perhaps unintended, of prenatal screening programmes where termination of pregnancy is an option.

The Don’t Screen Us Out campaign calls on the Government to halt the implementation of cfDNA screening, and to introduce reforms which would support those with Down syndrome and their families. The group adds that cfDNA may only worsen the culture of informally eugenic anti-disabled discrimination that exists in the Fetal Anomaly Screening Programme (FASP).

Lynn Murray, spokesperson for the Don’t Screen Us Out campaign said:

“As a mother of a daughter who has Down syndrome, I see every day the unique value she brings to our family and the positive impact she has on others around her.

Figures released earlier this year show that the fears of the Down syndrome community, namely that rolling out these tests would lead to a large drop in the number of babies with Down syndrome, were not unfounded.

While the screening itself is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, figures published in The Sunday Times last December revealed that the number of babies born with Down syndrome fell by 30% in NHS hospitals that have already introduced the new test. When this test is rolled out across the country, we can expect to see this situation replicated elsewhere. Such outcomes are likely to have a profoundly negative impact on the Down syndrome community.

We are calling on the Government to halt the further roll out of the tests in the NHS immediately, and to undertake an urgent inquiry into the impact that these tests are having on birth numbers of babies with Down syndrome.

There also needs to be greater support for parents who are expecting a child with Down syndrome.

Despite Nuffield Council of Bioethics’ 2017 call for the Royal College of Obstetricians and Gynaecologists to take immediate action and introduce professional guidance to cover the continuation of pregnancy after a diagnosis of foetal anomaly, there are still no guidelines to support women who choose to continue their pregnancies after finding that their baby has Down syndrome.

There is mounting evidence that unconscious bias exists in the FASP programme. We need the right reforms to turn things around and ensure that the tenets of diversity and inclusivity extend to screening conversations in the NHS.”

Written by Lynn Murray (features within MCC awareness magazine, issue 1).

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