When Peter Elliott founded the charity thirty 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 Antenatal 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

Assisted Dying Bill (Terminally Ill Adults / End-of-Life Bill)

We have also been deeply engaged in the debate around the Assisted Dying Bill, as proposed by Kim Leadbeater MP (blog). We’ve been working closely with fellow charity the National Down Syndrome Policy Group.

Why we raised our voice
In our view, people with Down syndrome — and others with intellectual disabilities — face particular risks under any assisted dying law. Evidence from jurisdictions where assisted dying is legal shows that consent, capacity, and autonomy assessments can be fraught when applied to individuals with intellectual disabilities (blogs). During the COVID-19 pandemic, the disproportionate mortality among people with intellectual disabilities revealed serious systemic failures in care and rights protection (blogs).

Our actions

  • We submitted written evidence to the Public Bill Committee in January 2025, outlining why the Bill, in its current form, poses a “serious threat to future care of people with Down syndrome and other intellectual disabilities.”  (blog).
  • We co-signed an open letter from the National Down Syndrome Policy Group (NDSPG), calling on Members of Parliament to prioritise disability rights and protection (blog).
  • We have continually raised awareness through our blogs and appeals — for example sharing personal testimony such as that of “Jen,” a mother and former healthcare professional, highlighting how assisted dying laws could devalue lives of people with DS.

Our concerns

  • The Bill appears rushed and was introduced with limited public notice.
  • Safeguards designed to protect people with intellectual disabilities — including a proposed amendment invoking the Down Syndrome Act 2022 — were rejected by the Bill Committee.
  • There is a real risk of coercion, misjudged consent, or societal pressures influencing medically vulnerable individuals. The history of systemic failures in care and support for people with disabilities makes this risk all the more acute.

Our continuing role and call to action
We remain committed to amplifying the voices of people with Down syndrome and their families through this debate. As the Bill advances through Parliament — including consideration by the House of Lords — we will continue to alert supporters, facilitate engagement with decision-makers, and call for protections rooted in human rights, equity, and dignity.

Down Syndrome Act 2022

The Down Syndrome Act 2022 represents a landmark legal milestone for our community.

What the Act means
The Act makes formal provision for meeting the specific needs of people with Down syndrome, aiming to ensure that individuals with DS receive appropriate, equitable support in healthcare, education, social care and other aspects of public policy.

How we engaged
As soon as the statutory guidance for the Act was published — on 5 November 2025 — we issued a public call for our community to get involved. We encouraged people with Down syndrome, their families/carers, organisations, and professionals in health, social care, education and housing to respond to the consultation.

Why this matters to us
The implementation of the Act has the potential to deliver real, practical improvements in quality of life for people with DS. The guidance currently being shaped will influence how support is delivered — and by participating in the consultation, the DS community has a direct opportunity to shape how law translates into real-world care and services.

Our call to action
We urge all members of our community to share their lived experience, knowledge and priorities as part of the consultation: the voices of people with DS, their families, and those who know them best, must inform how this “ground-breaking” law is put into practice.

Down Syndrome All-Party Parliamentary Group (DS APPG)

The DS APPG is a cross-party group of MPs and Peers that focuses on issues affecting people with Down syndrome.

Our involvement

We contribute evidence, expertise and lived-experience insights to the group’s meetings and consultations.

Why it matters

The DS APPG helped bring national attention to key inequalities and played an important role in the development of the Down Syndrome Act 2022.

Our role going forward

We will continue to provide input and ensure the needs and views of the Down syndrome community are reflected in policy discussions.

Personalised Antenatal Care Pathway for Pregnancies Suspected or Diagnosed with Down syndrome

2021

We helped develop a formal care pathway for pregnancies where there is a high chance — or a confirmed diagnosis — of Down syndrome, in collaboration with Positive About Down Syndrome (PADS) and St George’s University Hospitals NHS Foundation Trust.

What the pathway covers

  • Antenatal care under a named midwife or team for continuity of care.
  • Screening and assessment for possible fetal structural problems.
  • Monitoring for risks associated with prematurity or placental dysfunction.
  • Emotional and psychological support, using unbiased language and offering early access to support (formal or informal).
  • Postnatal planning — offering parents the opportunity to meet neonatal care teams before birth to discuss care after delivery.

Our role

We contributed to and supported the development of this pathway to help address the lack of consistent maternity care for families expecting a baby with Down syndrome. We advocate for wider adoption of the pathway across NHS trusts, to ensure all expecting parents in similar situations receive informed, compassionate, and evidence-based care.

Why it matters

Without a dedicated pathway, pregnancies involving Down syndrome have too often been subject to inconsistent care and inadequate support. A standardised pathway helps ensure better outcomes and supports informed, respectful decision-making by families.

 

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

2016 – 2023

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.

 

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.