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UK parents call new Down syndrome testing ‘state-sponsored eugenics’

(Photo credit: Carla Alves)

Dominic Lawson is the father of Domenica, a beautiful, 21 year old woman living with Down syndrome. He is also a columnist for the UK Daily Mail, who recently wrote a piece strongly against a new screening process that detects Down’s syndrome. He wrote:

The Department of Health is about to approve a scheme designed to bring about a world in which people like my youngest daughter will cease to exist.

Dawson is referring to a new non-invasive prenatal screening (NIPT) called ‘cell-free DNA’ or ‘cfDNA’. Cell-free DNA works by analyzing fetal cells in the mother’s blood and genetically testing them for signs of abnormalities. A pilot study (RAPID) commissioned by the  United Kingdom National Screening committee concluded that if implemented, cfDNA would lead to 102 more babies with Down syndrome being detected every year.

Figures from The National Down Syndrome Cytogenetic Register for England and Wales: 2013 Annual Report show that 90% of babies who are prenatally diagnosed with Down syndrome are aborted. If the pilot study is correct, 102 more babies with Trisomy 21 would be detected due to cfDNA testing with 92 of these preborn children projected to be aborted.

According to a campaign against the testing called “Don’t Screen Us Out,’ this could lead to a decline of 13% reported live births of babies with Down syndrome.

Lawson is disheartened over the way in which this testing is being applauded. One newspaper spoke enthusiastically of ‘the eradication’ of Down syndrome. Lawson believes this campaign’s  aim is to reduce people based solely on their possible disabilities. He writes:

The purpose of the medical campaign, however, is clear: it is to encourage more expectant mothers to undergo the screening process, on the grounds that it has been made less risky. But there is also a hidden agenda, which can properly be described as state-sponsored eugenics.

Lawson shares the accusations he received when the public discovered his family didn’t undergo pre-natal screening. A well known nurse wrote an article saying, ‘The Lawsons will not be paying the full price of their choice,’ and claiming “society would have to bear the burden of the ‘misery’ of his daughter’s life.” Lawson says that thinking is the same used by a German academic Karl Binding whose book, Permitting The Destruction Of Life Unworthy Of Life, was used to influence the Nazis in forcing the mentally disabled to be euthanized.

via DontScreenUsOut.org

via DontScreenUsOut.org Facebook page

Similar sentiments are being voiced by concerned parents in the “Don’t Screen Us Out” campaign. They say the cfDNA test should not be implemented into the UK Fetal Anomaly Screening Programme at this time. Their website states:

Implementing cfDNA screening at this stage would effectively mean introducing a worsened form of informal eugenics into our culture, particularly as a public perception that screening is now ‘easier’ may lead to a societal view that there is a duty to screen.

They’re asking for a delay to address issues such as:

  • A lack of clarity in communicating the diagnosis or prognosis of fetal disability
  • A presumption of the medical profession that they would opt for abortion
  • A lack of information and support for the option of bearing and raising their child with a disability

They believe the pressure parents receive to abort, along with a lack of support, violates the UK’s obligations stated in the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD states that people with disabilities and their families should be accommodated, included, and supported by society.

The Don’t Screen us out advocates are asking for:

  • A full ethical review  of the cfDNA screening
  •  Improved training and guidance requirements for medical professionals
  • The ready and accessible provision of every needed support for parents who choose to continue their pregnancy
  • The provision of information about adoption services and short-term concurrent foster placement from birth
  • The provision of information about and provision of palliative care for babies with a life limiting disability

They caution against detecting children with disabilities until those reforms are achieved and anti-disabled discrimination is avoided. The U.K Right to Life agrees stating:

Currently….the implementation of any NIPT technique would worsen the current situation for both unborn children and their parents, and contribute to the pervasive perception that disabled lives are worth less than others, as well as other invidious and lethal forms of discrimination. Until our health system is fully committed to enabling, rather than disabling and thereby failing, patients who receive diagnoses of fetal disability, a potential good will become an actual harm. For that reason, it must be currently opposed by all those who support the equal dignity and rights of all human beings.

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