The number of babies aborted with Down’s syndrome is expected to rise as Public Health England roll out a controversial screening test across the NHS from June.
The non-invasive prenatal test (NIPT) called “cell-free DNA” (cfDNA) will be made available on all health boards in England. According to PHE’s screening blog, women with a “higher chance (‘1 in 2’ to ‘1 in 150’)” of having babies with Down’s, Edward’s or Patau’s syndrome will have access to the test following screenings “in single and twin pregnancies”. The new screening will be part of the NHS Fetal Anomaly Screening Programme (FASP), the team that manages the roll out of screening programmes in the UK.
Disability rights activists and those living with the syndrome are concerned that the plan will contribute to a rise in the number of children with Down’s syndrome being screened out by termination.
A 2019 investigation by the The Sunday Times found that the number of children born with Down’s has fallen by 30% in English hospitals that already offer the service.
In December last year, the Telegraph reported that UK Down’s syndrome births have fallen by 54% since non-invasive screenings were introduced. The report, based on research published by the European Journal of Human Genetics, found that 9 in 10 women who knew their children had the syndrome aborted their pregnancies.
Findings from the National Institute for Health and Research RAPID evaluation study suggest that the NPIT screening will increase the number of children diagnosed with the syndrome. In light of that
The Don’t Screen Us Out campaign are calling on the government to evaluate the ramifications of the roll out. The Down’s syndrome rights group fear that NIPT “may only worsen the culture of informally eugenic anti-disabled discrimination that exists in the Fetal Anomaly Screening Programme”.
Lynn Murray, a spokesperson for the campaign, has noted the fears of the Down’s syndrome community about the affect of NPIT.
“The latest figures show that the fears of the Down’s syndrome community that rolling out these tests would lead to a large drop in the number of babies with Down’s syndrome were not unfounded,” she said.
“There is mounting evidence that an unconscious bias exists in the FASP programme,” she concluded, “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.”