People with Down’s syndrome, supporters and the wider community have raised serious concerns about the proposed cfDNA screening implementation, as it is projected to result in a profound increase in the number of children with Down’s syndrome screened out by termination. This would have a profound long-term effect on the community of people with Down’s syndrome.
These concerns are being constantly ignored by the Government. This must stop.
If you are person with Down’s syndrome, have a family member or friend with Down’s syndrome or are concerned about this change, please sign the open letter below to demand a stop to ignoring the concerns of our community. We know that there is many people within our community who are concerned about this change and have not been heard yet – this letter is your chance to be heard and to show the Government and Jeremy Hunt just how many people are seriously concerned about the proposed changes.
We will also be aiming to take this letter to the media so that the whole country knows about your concerns with a goal of demanding that the Government ensure our voices are heard and the right medical reforms in place to ensure the community of people with Down’s syndrome are not negatively impacted by this decision.
Dear Secretary of State for Health, Jeremy Hunt,
You are currently deciding on whether to follow a National Screening Committee recommendation that second-line cfDNA screening (NIPT – Non-Invasive Prenatal Testing) be implemented into the NHS Fetal Anomaly Screening Programme (FASP). The proposal has been presented as a measure to reduce a number of miscarriages from those who undergo invasive testing.
What has not been highlighted is that the National Institute for Health and Research RAPID evaluation study projects that the proposed implementation will result in 102 more babies with Down’s syndrome being identified each year and, based on the fact that 90% of babies diagnosed with Down’s syndrome in the womb are terminated annually, this is projected to result in a further 92 abortions of such children each year. The same study projects that it will result in 25 fewer miscarriages per annum compared to the current NHS Fetal Anomaly Screening Programme. There will, therefore, be an overall increase in loss of life.
Based on the most recent figures for Down’s syndrome births (2013), this would mean a 13% decline in reported live births of babies with Down’s syndrome. Such a decline would have a profound long-term effect on the community of people with Down’s syndrome and further enable the effective ‘screening out’ of those with certain disabilities from the UK population before they are even born. Implementing cfDNA at this stage would effectively mean introducing a worsened form of informal eugenics into our culture than already exists.
We are writing to you because the voice of people with Down’s syndrome and their families has been totally ignored by the Government on this issue. We have asked for a number of meetings with you and other members of the Department of Health to discuss our concerns regarding this matter. These requests have been ignored. Our concerns have been raised by an MP during Prime Minister’s Questions where David Cameron acknowledged that “there are moral and ethical issues that need to be considered in these cases” and said that you would “have to find a way through this” and “make sure we go about it the right way” – these promises have been swept aside. People with Down’s syndrome and their families have been taking to the airways, broadcast TV and newspapers around the country voicing the alarm they have felt about this new testing. Again all such concerns have been ignored.
This has to stop.
It is crucial that you consult us further on this decision before proceeding. It has been suggested by Department of Health staff in emails that the Nuffield Bioethics Council working group on this issue will deal with our concerns. While the intentions of the working group may be admirable, the Nuffield Bioethics Council is an independent body and recommendations from the working group are not binding on the Government. Accordingly, we urge you to stop using the existence of this working group as an excuse not to engage with us and our concerns.
What the undersigned are requesting is simple and straightforward – delay the introduction of cfDNA screening until there is a full ethical review of cfDNA testing and the current Fetal Anomaly Screening Programme, involving people with Down’s syndrome and their families, to ensure that the programme is consistent and compliant with the Convention on the Rights of Persons with Disabilities (CRPD) and wider human rights obligations.
This must be accompanied with medical reforms to ensure every parent with a disability diagnosis receives balanced information and support to ensure that cfDNA testing does not lead to the further screening out of people with Down’s syndrome.