Down’s syndrome advocacy group Don’t Screen Us Out have given a mixed review of the latest draft of an abortion Bill on the Isle of Man, praising its latest inclusion of information for parents who receive a pregnancy diagnosis of foetal impairment, but equally expressing profound concern that it could at the same time enable and worsen eugenic screening against children with Down’s syndrome and other similar conditions.
In the UK, 90% of babies with Down’s syndrome are aborted every year. This ‘informal eugenics’ has come about for three reasons:
• The availability of abortion up to birth following detection of a congenital condition.
• Pre-natal testing technology, which is steadily making detection of babies with congenital conditions easier, and leading to more and more babies with those conditions to be aborted.
• A discriminatory culture in the medical system, which has led parents to be presented by medical professionals, often with no lived experience or knowledge of the condition, with an assumption that they will want an abortion, and even that this is the sole responsible option, rather than presenting them with the help and information that would give them genuine choice to bear and raise children with congenital conditions with all the support society can make available.
The new clause 6(13) in the latest version follows some of the prescriptions made by the Don’t Screen Us Out campaign to correct the third cause of informal eugenics: the failures of medical systems throughout the British Isles, which do not prioritise giving support to parents. It mandates that requiring that “in the case of a prenatal diagnosis of foetal developmental impairment”, pregnancy counselling include “information about the possibility of continuing the pregnancy to term”, and further that “a pregnant woman is provided with information in writing from support groups and other organisations representing disabled people”. This is a significant improvement, that could help to blunt the effects of introducing cfDNA screening to the Island.
At the same time, Don’t Screen Us Out are alarmed that the Bill would also worsen the situation for the community of people with congenital conditions, by introducing the very legal context that has enabled informal eugenics in the UK and internationally: abortion for congenital conditions up to birth. Such legal changes carry the danger of reinforcing negative views of people with conditions, such as Down’s syndrome, on the Isle of Man, creating a negative effect on the number of babies born into the Down’s syndrome community.
Current IoM abortion law already allows for abortion up to 24 weeks on the grounds that the child would be “seriously handicapped”, and, as in the UK, requires two doctors to make an additional ‘good faith’ judgement that “that the handicap is not capable of being cured or substantially relieved by treatment or the passage of time”. This has apparently meant that there have not been terminations for Down’s syndrome and similar impairments on the IoM under the 1995 provisions.
The new proposed Bill, however, would extend abortion for disability up to birth, making Manx law equivalent to that of the UK, where it has led to 90% of such children being aborted. This number is set to worsen with the introduction of a new prenatal test, ‘cell-free DNA’ (cfDNA), otherwise known as Non-Invasive Prenatal testing (NIPT), which is projected to result in a profound increase in the number of children with Down’s syndrome screened out by termination.
A recent report of the International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) issued a stern warning about the drive to adopt NIPT in national screening programmes, saying that “the potential ethical disadvantages of NIPT can be summarised as routinisation and institutionalisation of the choice of not giving birth to an ill or disabled child”.
In November last year, Don’t Screen Us Out called on the IoM Government to revoke a decision to roll-out cfDNA in line with the UK Government. This announcement was made without consultation with people with Down’s syndrome and their families, no assessment was made by the Manx Department of Health and Social Care of the effect that the roll-out would have on the lives of people with Down’s syndrome, and no ethical review of the proposed rollout was carried out.
People with Down’s syndrome and their families have been taking to the airwaves, broadcast TV and newspapers voicing the alarm they have felt about this new testing. In 2016, the airing of Bridget Jones’s Diary star Sally Phillips’ BBC documentary A World Without Down’s Syndrome generated much discussion about the proposed rollout. The result has been that the relevant issues have gone on to be covered by the media internationally, most recently by Australian and US television.
Don’t Screen Us Out are calling on the Bill’s framer, Dr. Alex Allinson MHK, as well as other members of the Tynwald and the Manx public, especially those who are or who care for people with mental or physical impairments, to ensure that the positive new elements of the Bill that enable support to parents of a child with a congenital condition are not compromised by introducing any change to the law which could increase the number of children with Down’s syndrome screened out by termination on the Isle of Man.
Fran Tinkler, Manx parent of Elizabeth who has Down’s syndrome, and Secretary of ‘Down’s Syndrome Isle of Man’, said:
“Whatever you think about abortion, we know that the laws across the UK have led to 90% of babies found to have Down’s syndrome being aborted. If these laws were copied on the Isle of Man by introducing abortion for disability up to birth, at the same time as going ahead with the planned DHSC roll-out of access to cfDNA tests (without any consultation with the Manx community of people with Down’s syndrome and their families), we will simply be exporting the dire eugenic consequences from the UK to the Island”.
Lynn Murray, spokesperson for Don’t Screen Us Out, said:
“We are very glad indeed that the new version of Dr. Allinson’s Bill contains information and support for parents. Nonetheless, the consequence of worsening the law and consequently attitudes on the Isle of Man by copying the UK and introducing abortion up to birth in cases of congenital conditions, at the same time as introducing NIPT, will be seriously harmful.
As a mother of a child with Down’s syndrome, who knows the love and joy that such children can experience, I have to stress how important it is for the Manx Government and its people to respond to the challenge of creating a truly caring and compassionate society by means of urgent meaningful consultation with the Down’s syndrome community and adherence to national and international disability guidance, thereby giving this community the support they need to flourish”.
ENDS
- For more information on the Don’t Screen Us Out campaign, see our website www.dontscreenusout.org or email info@dontscreenusout.org
- For interviews, contact Don’t Screen Us Out spokeswoman: Lynn Murray – info@dontscreenusout.org / 07840966736
- For a full list of previous coverage on this issue see our website – www.dontscreenusout.org
