British Actress Pens Documentary on Controversial Test to Detect Down Syndrome

By Amy Furr | October 4, 2016 | 4:27pm EDT
Girl with Down Syndrome. (CDC)

( -- British actress Sally Phillips, whose 12-year-old son, Olly, was diagnosed with Down Syndrome ten days after birth, has written a documentary to raise awareness about the congenital condition and a highly controversial non-invasive prenatal test (Non-Invasive Prenatal Testing (NIPT), or SAFE test) used to diagnose it in utero.

Entitled A World Without Down’s Syndrome?, the documentary explores the impact NIPT will have on the future Down Syndrome population.  It will air Wednesday on BBC2. 

An extra chromosome 21 causes “mild to moderate intellectual disabilities” in addition to other problems in those with the syndrome, according to the National Institutes of Health (NIH).

“What this is going to mean is that more and more women are going to know that the baby they’re carrying has Down Syndrome in pregnancy.

"And if we remember that most women who know for sure terminate, presumably this is going to mean far fewer babies with Down Syndrome being born,” Phillips, who starred in both Bridget Jones’s Diary and Bridget Jones: The Edge of Reason, said in a video aired on BBC.

In contrast to the current invasive tests - amniocentesis or chronic villus sampling (CVS) - which are performed by inserting a thin needle into the womb to collect amniotic fluid or cells from the placenta, the new NIPT test only requires expectant mothers to have blood drawn in order to determine if there are any abnormalities that could lead to chromosomal disorders such as Down Syndrome.  

According to St. George’s University Hospitals in London, England, amniocentesis and the CVS test are “only able to detect 85% of babies with Down Syndrome while also giving a very large number of false positive results.”

In contrast, the SAFE test has a “high detection rate of over 99%” for certain chromosomal abnormalities such as Down Syndrome.

 “The increased accuracy of the SAFE test reduces the number of pregnant women who are falsely determined to be high risk, while reducing the chance of unnecessary invasive procedures. These invasive procedures, such as amniocentesis or CVS, can be stressful, painful, and carry a small risk of miscarriage. The SAFE test is safer, faster, and more accurate,” the hospital noted.

The British government is expected to make the NIPT test available through its National Health Service (NHS).

However, a campaign launched by individuals with Down Syndrome, their families, and grassroots advocacy groups opposes the new test, calling it "anothr pathway to abortion".

One group called ‘Don’t Screen Us Out’ has written an open letter to British MP Jeremy Hunt “demanding that his department stop ignoring the concerns of people with Down Syndrome, their families and the wider community and start consulting them on the proposals."

The new test "would have a profound long-term effect on the population of the Down Syndrome community, and enable a kind of informal eugenics in which certain kinds of disabled people are effectively ‘screened out’ of the population before they are even born,” the group stated.

The campaign cites figures released in a 2014 report by the National Down Syndrome Cytogenetic Register for England and Wales showing that “90% of babies who are prenatally diagnosed with Down’s Syndrome are aborted.”

According to the campaign’s research, if the NIPT test is implemented, the percentage of babies aborted due to early detection of Down Syndrome could increase to 92%.

“We have the most expensive state-of-the-art Down Syndrome detection test and the ability to terminate right up until birth,” said Phillips. 

“But no allowance is made for the point of view of the other side. The families of people with Down Syndrome are not consulted. People with Down Syndrome are not consulted. There has never been an ethical debate about it,” the actress said.

“Although Olly is the reason I started making this film, it’s not just a film about him. It’s not just about Down 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?”

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