November 13, 2017 (SPUC) — Ethicists and Down's syndrome advocates have raised concerns about a new process for prenatally screening for chromosomal conditions, which, they say, removes the opportunity for families to receive proper counselling.
Newspapers such as the Independent have been talking about a new, “far more accurate” test, which researchers have hailed as “transformational.” The test is in fact the non-invasive prenatal screening (NIPT) which the Government announced it was rolling out last year, despite campaigners concerns. However, the “reflex” DNA system, trialled by researchers at Queen Mary University of London across five NHS maternity wards, involves taking the pregnant woman’s blood at the initial screening stage and automatically sending it to be analysed using NIPT if the woman is found to have at least a 1 in 800 chance of having a baby with Down's, Edward's or Patau's syndromes.
According to the Nuffield Bioethics Centre, “this contrasts with the system that Public Health England will be rolling out across the NHS next year, in which women found to have a 'high chance' initial screening result will be given the opportunity to discuss NIPT with a specially trained healthcare professional and decide if they would like to have NIPT or not.”
Catherine Joynson, Assistant Director at the Nuffield Council on Bioethics raised concerns about the reflex system, saying: “The reflex study authors believe that recalling women for a discussion before ordering the NIPT test to be a weakness, but we think this step could be an important opportunity to give women and couples information and support.”
A report on the ethics of NIPT published by the Council earlier this year concluded that NIPT should only be offered in a way that enables women and couples to make informed choices. Joynson added: “Information should be provided on the optional nature of testing, the implications of a positive or negative result, the choices that testing may lead to, and up-to-date, balanced information about what it is like to have a child with the condition being tested for. This is unlikely to be covered adequately at the initial booking appointment.”
Serious consent issues
Other voices have also been raised against the idea that screening be done automatically. Actress Sally Phillips, who was inspired by her son Ollie to make the documentary A World Without Down's Syndrome, tweeted: “This test is not new – it’s #NIPT with even more consent issues. Travelling in opposite direction to good, ethical prenatal care.”
Insulting to the Down's syndrome community
Lynn Murray, spokesperson for Don’t Screen Us Out, told the Huffington Post: “The researchers are claiming this approach is going to lead to more babies with Down’s syndrome being identified, so it is likely to result in an increase in the number of children with Down’s syndrome screened out by termination.”
“This is likely to have a profound long-term effect on the population of the Down’s syndrome community, and further 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.” Lynn, whose daughter Rachel has Down's syndrome, added: “It’s insulting to the community of people with Down’s syndrome and our families to call this 'transformational.'”
Reprinted with permission from the Society for the Protection of Unborn Children.