Who are we?
In February 2016, a group of parents from this community joined together to advocate for those with Down’s syndrome; and through providing a more modern and accurate picture of the realities of life with Down’s syndrome, we hope to help families make a more informed choice following a prenatal diagnosis.
Why now?
We got together following an announcement from the UK National Screening Council about implementing non-invasive prenatal testing (NIPT) for Down’s syndrome as part of an evaluative programme.
While we recognise that NIPT will reduce the need for invasive testing for prospective parents, we have real concerns about its impact on the Down’s syndrome community. The roll out of this screening needs to be respectful of our Down’s syndrome family, and the ethical and moral implications need careful exploration. As such, we’re calling for the Department of Health to wait for the findings of Nuffield Council of Bioethics working group and incorporate those recommendations before this screening is implemented.
We’re also on a mission, after many years of conversation about our own experiences, to improve prenatal screening practices and support for expectant parents via a complete and independent review of screening for Down’s syndrome. We want better, unbiased information and more support for those who choose to continue their pregnancies.
What can I do to help?
Please write to your MP. This is by far the most effective way to get our voices heard. There is a draft letter for you here:-
Use this link to find out who your MP is and how to contact them
Thank you for your support.
If you have any questions, please contact Victoria Woodham or Sarah Hoss.
We believe this campaign can be complementary to the Down’s Syndrome Association activity concerning NIPT implementation. If you would like to enclose the DSA documentation there is a link below.