A successful rally took place outside Parliament yesterday, where individuals, families and research organisations gathered to speak up for those with Down's Syndrome.
The Don't Screen Us Out demonstration highlighted the discriminatory consequences of new pre-natal testing – which many believe will lead to increased abortions on the basis of a Down's Syndrome diagnosis.
The rally was well-attended by individuals with Down's Syndrome, their families and other researchers and campaigners, as they called on the government to increase support for those with the condition, and to ensure parents are given balanced information if their unborn child is thus diagnosed.
They also affirmed the dignity and happiness that those with Down's Syndrome can experience, and the joy they bring to others around them.
Pre-natal testing approved despite opposition
The demonstration was held in response to new-prenatal screening, called 'cell-free DNA' (cfDNA) testing, which proponents say will help to reduce the number of miscarriages that are associated with more invasive testing through amniocentesis.
cfDNA tesing, recently approved for use in the UK, has received some strong opposition, including a warning from a recent UN report from the International Bioethics Committee.
A National Screening Committee pilot study has predicted that the new testing will result in 25 fewer miscarriages per year, but it also suggests that 92 more babies per year will be aborted.
It predicted that the testing will detect 102 more babies with Down's Syndrome a year, and with 90% of mothers with a pregnancy diagnosis of Down's Syndrome choosing to abort, this equates to 92 more abortions.
This also equates to a decline of Down's Syndrome live births by 13%.
'These tests will make the situation worse'
Christian Concern highlighted these concerns in its response to a consultation on cfDNA testing.
Lynn Murray, the head of Saving Downs and spokeswoman for Don't Screen Us Out, commented:
"We call on Jeremy Hunt to reject proposals to introduce these new tests. As a parent of a teenage daughter with Down's syndrome, I've had 16 years of seeing the effects of screening on the lives of people with Down's syndrome and their families.
"These new tests will make this situation worse, not better. The UK government should be putting its energy behind providing real support for our families and other parents who are expecting a child with Down's syndrome."
'There is a chance that things may change'
Bridget Jones's Diary and Miranda star Sally Phillips, whose son has Down's Syndrome, spoke via a pre-recorded message for the event. She said:
"It’s so important that we bust these myths about Down's syndrome and that we get rid of all the out of date information that is out there... For too long the government have acted as if our lives don't matter but… Be encouraged! There is a chance that things might change."
'A more diverse society'
Sarah Hoss, spokeswoman for Future of Downs, said:
"Personally I believe that people with Down's make for a more diverse society and that people with DS require respect and support to become more independent and live satisfying lives. The life expectancy of people born now with DS is similar to the general population.
"People with DS and their families need to be heard and contribute to the decision making around tests and the government needs to hear what we are saying."
Related Links:
View images of the event and like Don't Screen Us Out on Facebook
Don't Screen Us Out initiative to protect babies with Down's
Challenging society's perception of Down's syndrome