When Peter Elliott founded the charity over twenty years ago, he could not predict the vital necessity of advocacy for the DS community.

Today, there is a need for an accurate and evidence-based representation of Down syndrome for the public and professionals. This is an integral part of what the foundation does; we put people with DS and their views at the centre of all our work.

A prime example of this is the Foundation’s role lobbying government about the current National Ante-Natal Screening Programme. We support campaigns that fight disability discrimination, like Don’t Screen Us Out, campaigns and groups that ask for a true ethical review of the screening programme in light of the UK’s obligations under the Convention on the Rights of Persons with Disabilities (CRPD). This demands that disabled people and their families be accommodated, included, and supported by society.

“At a time when medical research is advancing at an unprecedented rate, it seems perverse that we should be putting so much effort into denying ever greater numbers of human beings with Down Syndrome the most fundamental right of all – the equal right to exist. If choice is to mean anything, then there has to be an alternative to the dead-end option of ‘search and destroy’ technology. The Down Syndrome Research Foundation is crucial because it both helps provide that alternative and champions the positive choice for life, love and laughter. It does so not just by supporting and working with parents, researchers and people with Down Syndrome to find ways of improving their quality of life, but also through its invaluable involvement in campaigns like ‘Don’t Screen Us Out’ and ‘We’re All Equal’. I look forward to working with this amazing organisation as, together, we build a better, fairer and genuinely equal world for everyone with Down Syndrome.”
— Lord Kevin Shinkwin

With all this at stake, we at the Foundation believe that fighting for the human rights of people with DS and their families’ means that one day:

  • The condition will be better understood and negative myths can be put to rest
  • We’ll see equitable research funding for DS related issues
  • New parents can be free of fear, stigma and poor treatment
  • National and compassionate guidelines, from pregnancy to end-of-life care, become commonplace

Using evidence and the actual views of adults with DS and parents we will continue to speak out and boldly advocate for our community.

We participate in on-going programme reviews and external ethical reviews.

Past and Present Projects

NHS Fetal Anomaly Screening Programme (FASP) Information and Education Sub-Group

Oct 2016 – Present

The UK National Screening Committee (UKNSC), through the Fetal Anomaly Screening Programme, has recommended that non-invasive prenatal testing (NIPT) be offered as an additional step in the current screening pathway for Down’s, Edward’s and Patau’s syndromes for women with a higher risk (chance) result of 1 in 2 to 1 in 150.

The aim of the Information and Education sub-group is to identify and specify the parent and public information and staff training requirements to support the rollout.

In addition, the Information and Education sub-group will address any other issues raised, as appropriate, regarding information and education for users and professionals along the whole FASP pathway.

Dr Corcoran will represent the DSRF UK, presenting the evidence-based views of people with DS, their parents and prospective parents.

Read More

Non-invasive prenatal testing: ethical issues – submission to Nuffield Bioethics Committee/ethics review of MENCAP work collecting views from people with DS

May 2016 – Feb 2017

The Nuffield Council on Bioethics sought views on the ethical issues raised by the increasing availability and use of non-invasive prenatal testing (NIPT).

NIPT can be carried out by means of a simple blood test from 10 weeks of pregnancy. It uses cells of the placenta that circulate in the mother’s blood to look at the unborn baby’s DNA. It can be used to estimate the chance that the baby has a chromosomal abnormality such as Down’s syndrome, or to test for other genetic conditions such as achondroplasia. NIPT is available through private clinics and in some NHS hospitals as part of the research. The Government is considering whether NIPT should be offered more widely on the NHS to pregnant women whose babies are found to be at high risk of having Down’s Syndrome, Patau Syndrome or Edwards Syndrome.

Dr Corcoran submitted the response for the DSRF UK and advocated for seeking the views of people with DS for the report and assisted MENCAP in the ethical review of this piece of work.