Corporate report

Screening in the UK: making effective recommendations 1 April 2020 to 31 March 2021

Published 30 July 2021

Between 1 April 2020 and 31 March 2021 the UK National Screening Committee (UK NSC):

• held 3 virtual meetings

• had 15 members (as of 31 March 2021)

• made 22 recommendations on population screening products

• received 4 submissions during the 2020 annual call for topics

• considered 3 programme modification proposals

• took 2 Chair’s actions in between meetings

Chair’s actions can be taken by the Chair on behalf of the committee, with committee consideration, to make a recommendation in between or after a meeting. This is done where a recommendation would otherwise have to wait for the next committee meeting. It allows the UK NSC to be more responsive and to not delay outcomes.

The programme modification proposals were to:

• permanently stop the offer of bowel scope screening in England

• add thoracic aortic aneurysm (TAA) screening to the abdominal aortic aneurysm (AAA) screening programme and lower the screening age from 64 to 40 years

• add auditory neuropathy spectrum disorder (ANSD) to the newborn hearing screening programme (NHSP)

1. Evidence reviews

The UK NSC has a rigorous process to review evidence relating to the proposed introduction, modification and cessation of national population screening programmes. The committee assesses evidence using its criteria for appraising the viability, effectiveness and appropriateness of a screening programme.

It develops evidence summaries using rapid review methods. The evidence summaries determine if:

• there have been significant developments in the evidence base on a topic

• a current recommendation should be changed or not

• a topic would benefit from further assessment

To make the evidence review process more efficient, the UK NSC also uses an evidence mapping approach. Evidence maps are a way of scanning published literature to look at the amount and type of evidence on a topic to help decide if a more in-depth review is justified.

The UK NSC uses commissioning documents to outline the work that external reviewers undertake to produce evidence review products.

1.1 Abdominal aortic aneurysm (AAA) screening programme modification proposal

The condition

An aneurysm develops when the wall of a blood vessel becomes less elastic and starts to ‘balloon’. This makes the wall weaker and at risk of bursting (rupture). Aneurysms can occur in any artery. They mainly occur in the section of the aorta that passes through the abdomen. This is known as an abdominal aortic aneurysm (AAA). The next most common place for an aneurysm is in the aorta of the chest, a thoracic aortic aneurysm (TAA). A major concern with having an aneurysm is whether it will burst (rupture). If this happens it can cause internal bleeding.

Proposed modification

The proposed programme modification was to add screening for TAA to the AAA screening programme and to lower the screening age from 65 to 40 years.

UK NSC recommendation

Following an evidence map review, the UK NSC does not currently recommend the addition of TAA to the AAA screening programme or lowering the screening age. Read the full UK NSC recommendation on screening for AAA.

Reasons

No studies were identified that met the inclusion criteria for questions covered by the evidence map. There was not enough evidence in these important areas to justify commissioning an evidence summary.

Next review date

1 April 2021 to 31 March 2022

1.2 Adrenoleukodystrophy (ALD)

The condition

ALD is a rare inherited condition where certain fats cannot be broken down by the body. These fats build up and can affect the nervous system and the adrenal glands, which produce hormones.

Symptoms of ALD can include dizziness, visual and hearing problems, coordination difficulties, stiffness and weakness in the legs. The condition worsens over time, leading to gradual loss of physical and mental skills and early death.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for ALD. Read the full UK NSC recommendation on screening for ALD.

Reasons

The UK NSC commissioned an evidence map for newborn screening for ALD, which was published in 2021. The evidence map found limitations in both the amount and type of evidence relating to:

• incidence of ALD in the UK

• how ALD might present over time

• accuracy of screening tests

Studies on treatment tended to focus on describing how the condition progresses and is managed. There was very limited information on the outcome of treatment and whether it is more effective in individuals without symptoms, compared to those already presenting with symptoms.

Uncertainties remain about the impact of receiving an early diagnosis of ALD. This is particularly relevant for those who do not go on to develop the most severe form of ALD (childhood cerebral ALD) and for those babies identified with conditions other than ALD, for which there are no treatments. For these reasons, an evidence summary is not currently justified, and the UK NSC recommendation remains that newborn screening for ALD is not recommended.

Next review date

1 April 2024 to 31 March 2025

1.3 Asymptomatic bacteriuria

The condition

Asymptomatic bacteriuria is the presence of bacteria in a person’s urine without symptoms of infection. It can suggest that a person may have a urinary tract infection. It may also cause complications for pregnant mothers and their babies.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend antenatal screening for asymptomatic bacteriuria. Read the full UK NSC recommendation on antenatal screening for asymptomatic bacteriuria.

Reasons

The UK NSC determined that:

• it is not known which screening test would work and at what point during pregnancy a test would be useful

• there is not enough information to understand how women might feel about asymptomatic bacteriuria screening and treatment (such as taking antibiotics) in pregnancy

Next review date

1 April 2023 to 31 March 2024

1.4 Bladder cancer

The condition

About 10,000 people are diagnosed with bladder cancer in the UK each year. It is the 10th most common cancer. By the time of diagnosis, most bladder cancers are still limited to the bladder. The condition is more common in older adults, with most new cases diagnosed in people aged 60 and above. Bladder cancer is also more common in men than in women.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for bladder cancer. Read the full UK NSC recommendation on screening for bladder cancer.

Reasons

The UK NSC commissioned an evidence map in 2019 for screening for bladder cancer in adults. The map, published in 2020, did not find enough evidence to warrant a new evidence review. The UK NSC recommendation remains that screening is not recommended because there is no safe, precise and valid screening test for bladder cancer.

Next review date

1 April 2023 to 31 March 2024

1.5 Bowel scope screening in the bowel cancer screening programme

The condition

Bowel cancer is the general name given to cancer that begins in the large bowel. It can also be referred to as colon cancer and colorectal cancer. Bowel cancer is one of the most common types of cancer diagnosed in the UK. Most people diagnosed with it are over the age of 60.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC recommended the permanent discontinuation of the use of bowel scope in the English bowel cancer screening programme. Read the full UK NSC recommendation on bowel cancer screening.

Reasons

The UK NSC recommended the permanent discontinuation of bowel scope in the English bowel cancer screening programme because:

• faecal-immunochemical test (FIT) screening from 50 years old (reduced from 60 years old) is effective in reducing deaths from bowel cancer and may also help prevent it

• it is unclear whether offering both bowel scope and FIT screening to people from 50 years old provides additional benefit to FIT testing alone – further research would be needed to find this out

• the bowel scope test is intrusive and difficult to implement

• all bowel cancer screening was temporarily suspended during the COVID-19 pandemic, and stopping bowel scope screening permanently allows service providers to focus on restoring screening

Next review date

1 April 2021 to 31 March 2022

1.6 Depression

The condition

Depression is a common mental health condition and one of the leading causes of disability worldwide. People who are depressed may have feelings of extreme sadness that can last for a long time and can be severe enough to interfere with daily life.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for depression. Read the full UK NSC recommendation on screening for depression.

Reasons

Screening is not recommended because:

• the test would wrongly identify a large number of people as having depression

• it is uncertain if screening would reduce the negative impact of depression

• it is not known if treating milder depression reduces the development of more severe depression in the longer term

• it is unclear how well depression is identified and managed in the UK at present

Next review date

1 April 2023 to 31 March 2024

1.7 Fetal presentation

The condition

By the late stages of pregnancy, most babies in singleton pregnancies (where a woman is having a single baby) are positioned with their heads down ready for birth. However, approximately 3 to 4% of all pregnant women who reach full term will have a baby presenting in the breech position (bottom first). Breech presentation places the baby and the mother at increased risk of a complicated vaginal birth or caesarean section (C-section).

The proposal

The 2019 annual call for topic proposal for screening for fetal presentation proposed that all pregnant women, irrespective of risk status, should be screened using handheld ultrasound devices to detect fetal presentation during routine antenatal appointments at around 36 weeks’ gestational age.

UK NSC recommendation

Following the outcome of an evidence map, the UK NSC recommended that further work on screening for fetal presentation should not be carried out at this time.

Reasons

The evidence map concluded that the volume and type of direct evidence related to ultrasound screening for breech presentation at 36 weeks’ gestation is insufficient to justify an evidence summary at this stage. Though limited, the evidence map pointed out that the current evidence appears promising and that the topic should be added to the UK NSC recommendations list.

1.8 Dyslexia in school age children

The condition

Dyslexia is a common term for reading disability when people have difficulties learning to decode print, a skill required for reading. Reading comprehension is the other reading difficulty people may have, presenting as problems with understanding word meanings and problems learning grammatical skills. People can have both difficulties.

There is no one common cause of dyslexia. It involves the combined effects of many genes and environmental factors, each of which has a small influence.

The proposal

The annual call for topics proposal was to introduce a population screening programme to screen for dyslexia in school age children.

UK NSC recommendation

Following an evidence map review, the UK NSC does not currently recommend screening school age children for dyslexia.

Reasons

Only one study was identified that focused on screening specifically for dyslexia. The volume and type of studies available about the accuracy of screening tests specifically for dyslexia was insufficient to justify a further review of the evidence.

1.9 Fetomaternal alloimmune thrombocytopenia (FMAIT)

The condition

FMAIT is a rare genetically inherited condition that prevents a newborn baby’s blood clotting effectively. In a small number of pregnancies, the mother’s body starts attacking the unborn baby’s platelets (the blood cells that help blood to clot). This can cause serious risk of death or permanent brain damage and long-term disability in the baby.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for FMAIT. Read the full UK NSC recommendation on antenatal screening for FMAIT.

Reasons

Screening for FMAIT is not recommended because:

• FMAIT does not harm all babies, and there is no test which can tell which babies will be harmed

• there is no clear evidence to suggest that screening and subsequent treatment would be better than treating women and babies when problems first arise

These reasons were confirmed by the 2020 evidence map, which did not find enough new information to justify performing a full evidence review.

Next review date

1 April 2023 to 31 March 2024

1.10 Galactosaemia

The condition

Galactosaemia is a rare genetic condition. A person with this condition cannot break down the sugar present in milk into glucose (the sugar used by the body). Symptoms and complications include difficulties with feeding and speech, and damage to the liver and kidney. Treatment involves avoiding foods that contain galactose for life.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend newborn screening for galactosaemia. Read the full UK NSC recommendation on newborn screening for galactosaemia.

Reasons

The UK NSC does not recommend a national screening programme for galactosaemia because:

• babies show symptoms of galactosaemia at around 7 days of age – quicker than the screening results are available

• screening tests are not accurate enough and many healthy babies would be misdiagnosed as having the condition

• it is unclear if early treatment as a result of screening can improve long-term health outcomes.

Next review date

1 April 2024 to 31 March 2025

1.11 Haemochromatosis

The condition

Haemochromatosis is a condition where iron levels build up in the body over time. Deposits of iron begin to increase around various organs, including the heart and liver. This can cause uncomfortable symptoms, such as nausea, abdominal pain, constipation and joint pain. It can also lead to liver damage, heart failure and diabetes.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for haemochromatosis in adults. Read the full UK NSC recommendation on screening for haemochromatosis in adults.

Reasons

The UK NSC does not recommend screening for haemochromatosis in adults because:

• although a faulty HFE gene is known to cause iron to build up, this does not happen to every person with the faulty gene

• screening would identify people who may never experience symptoms

• there is limited evidence on whether treatment is more effective in individuals without symptoms compared with those who have symptoms

• there is no evidence that a screening programme is the best way of helping people with the condition

Next review date

1 April 2024 to 31 March 2025

1.12 Hearing loss in adults

The condition

Hearing impairment, or deafness, is when hearing is affected by a disease, disorder or injury. Hearing loss can be present at birth or develop in childhood or adulthood.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for hearing loss in adults. Read the full UK NSC recommendation on screening for hearing loss in adults.

Reasons

The UK NSC does not recommend screening for hearing loss in adults because:

• new screening tests, such as smartphone apps, were identified but they were not accurate enough

• although the main treatment would be the use of hearing aids, it is unclear how willing people would be to use them

• there was no evidence on whether people were likely to have better health if they did use hearing aids after being screened

• it is unclear how well hearing loss in adults is already identified and managed in the UK at present, without a screening programme

Next review date

1 April 2024 to 31 March 2025

1.13 Newborn hearing screening programme modification proposal

The condition

Hearing impairment, or deafness, is when hearing is affected by a disease, disorder or injury. Hearing loss can be present at birth or develop in childhood or adulthood.

The NHS Newborn Hearing Screening Programme offers screening using the automated otoacoustic emission (AOAE) test. A baby with clear responses from the AOAE test has no suspected hearing problems. The rare condition of auditory neuropathy spectrum disorder (ANSD) occurs when sounds are received normally by the cochlea but become disrupted as they travel to the brain. This means there is a problem with the hearing nerve. Babies with ANSD would have clear responses from the AOAE test and be presumed to have no hearing problems.

Proposed modification

The proposed programme modification was to add ANSD to the newborn hearing screening programme.

UK NSC recommendation

Following an evidence map review, the UK NSC does not currently recommend adding ANSD to the NHS Newborn Hearing Screening Programme. Read the full UK NSC recommendation on screening for hearing loss in newborns.

Reasons

There is limited evidence on the incidence of ANSD. It is thought that via the current screening programme in England, 4 out of 6 per 100,000 well babies with ANSD may be missed. As ANSD may only affect one ear it is unclear how this would affect their hearing and development overall. There was not enough applicable evidence on the time, resource or cost implications of including AABR into the ‘well-baby protocol’ care pathway for babies who are not born premature or suspected of having a condition.

Next review date

1 April 2023 to 31 March 2024

1.14 Oral cancer

The condition

The term oral cancer refers to cancers which develop in a part of the mouth, such as the:

• surface of the tongue

• inside of the cheeks

• roof of the mouth (palate)

• lips

• gums

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for oral cancer. Read the full UK NSC recommendation on screening for oral cancer.

Reasons

Oral cancer develops from abnormal tissue in the mouth, but only 5% of abnormalities become cancers. It is not possible to predict which ones will become a cancer and which will not. There is not enough evidence to know how well existing tests would perform in a general population. It is also not clear what is the best treatment to use in people who are detected by screening.

This was confirmed by the 2020 evidence map, which did not find enough new information to justify a full evidence review.

Next review date

1 April 2023 to 31 March 2024

1.15 Pressure reducing carotid stenosis, vascular dementia, regional cerebral hypotension

Chair’s action was taken on an 2019 annual call for topic proposal for an evidence map on screening for pressure reducing carotid stenosis, vascular dementia, regional cerebral hypotension.

The condition

Carotid artery stenosis is a narrowing of the large arteries located on each side of the neck that carry blood to the head, face and brain. Over time, narrowing of these arteries can lead to low blood pressure in parts of the brain. Sometimes, if the person has an episode of low blood pressure, the pressure reducing stenosis causes low blood flow to the brain resulting in temporary or permanent brain dysfunction.

Call for topic proposal

The proposal from the 2019 annual call was to introduce population screening for pressure reducing carotid stenosis, vascular dementia, regional cerebral hypotension in adults over the age of 50 years.

UK NSC recommendation

Following an evidence map review, the UK NSC does not currently recommend screening for pressure reducing carotid stenosis, vascular dementia, regional cerebral hypotension in adults over the age of 50.

Reasons

No studies were identified that met the inclusion criteria for the single question covered by the evidence map. There was not enough evidence in this important area to justify commissioning an evidence summary.

1.16 Preterm birth in low risk women

The condition

1 in 12 babies in the UK are born preterm. Premature babies can have serious medical problems including breathing issues and might need to go to an intensive care unit.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for preterm birth. Read the full UK NSC recommendation on newborn screening for preterm birth.

Reasons

Screening is not recommended because:

• the screening tests currently available to predict preterm birth in women without symptoms are not reliable enough.

• it is not certain that treating women identified by screening as having a higher chance of preterm birth would reduce their risk of having a premature baby.

Next review date

1 April 2023 to 31 March 2024

1.17 Prostate cancer

The condition

Prostate cancer is the most common cancer in men and usually affects men over the age of 65. The prostate is a small gland found in men. It is located in the pelvis between the penis and the bladder. The main function of the prostate is to help in the production of semen.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for prostate cancer. Read the full UK NSC recommendation on screening for prostate cancer.

Reasons

The prostate-specific antigen (PSA) test is not accurate enough to detect prostate cancer that needs treatment. It can falsely find men who do not have prostate cancer. It can also miss some cancers. This means many men might have to undergo unnecessary and often unpleasant tests and/or unnecessary treatment. It is unclear if other tests such as an MRI scan, with or without PSA, are accurate enough.

At present, there is no single treatment that is definitely better for patients with early-stage prostate cancer, as treatment effectiveness needs to be weighed against side effects.

It is unclear how PSA screening would impact on deaths due to prostate cancer. A PSA-based screening programme could harm men as some would be diagnosed with a cancer that would not have caused them problems during their life. This would lead to additional tests and treatments which can also have harmful side effects.

Next review date

1 April 2023 to 31 March 2024

1.18 Scoliosis

The condition

Scoliosis is an abnormal curvature of the spine to one side. In those who have the condition, the spine bends either to the left or to the right. The bend can occur at any point along the spine from the top to the bottom. Adolescent idiopathic scoliosis (AIS) is a condition of unknown cause that affects 2 to 3% of children between the age of 10 and reaching skeletal maturity.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for AIS. Read the full UK NSC recommendation on screening for AIS.

Reasons

The UK NSC does not recommend screening because there is not enough evidence to show if detecting the condition earlier through screening would result in better health outcomes than waiting until symptoms develop.

Next review date

1 April 2024 to 31 March 2025.

1.19 Sickle cell and thalassaemia screening programme modification proposal

The condition

Sickle cell and thalassaemia are inherited blood disorders that affect a part of the blood that carries oxygen around the body.

Proposed modification

The proposed programme modification was to add non-invasive prenatal testing or diagnosis (NIPT or NIPD) to the recommended sickle cell and thalassaemia (SCT) screening programme.

UK NSC recommendation

Following an evidence map review, the UK NSC does not currently recommend adding NIPT or NIPD to the SCT screening programme. Public Health England’s national SCT screening programme team has set up a steering group to monitor ongoing research across the UK.

Reasons

The evidence base for this topic was moderate but of varying quality and of low applicability to the UK setting. On the basis of the evidence map, the type of evidence related to NIPT or NIPD screening for SCT was insufficient to justify a full review.

Next review date

1 April 2021 to 31 March 2022

1.20 Stomach cancer

The condition

The stomach is part of the digestive system. Stomach cancer, or gastric cancer, tends to affect people over the age of 55. It is more common in men than in women.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for stomach cancer. Read the full UK NSC recommendation on screening for stomach cancer.

Reasons

The UK NSC does not currently recommend introducing a national screening programme for stomach cancer because:

• there is no appropriate screening test

• it is not known how and when to treat suspicious signs of stomach cancer

Next review date

1 April 2024 to 31 March 2025

1.21 Syphilis in pregnancy

The condition

Syphilis is a bacterial infection which is usually passed through sexual contact. Congenital syphilis occurs if infected mothers pass the infection to their unborn child. Untreated syphilis can cause serious health problems for mother and baby.

The NHS Infectious Diseases in Pregnancy Screening Programme currently offers women a blood test between 8 and 12 weeks of pregnancy to screen for syphilis. Following 4 isolated cases of congenital syphilis between 1 April 2016 and 31 March 2017 in babies whose mothers had been given true negative screening results, the UK NSC commissioned a clinical and cost effectiveness model to establish if offering all pregnant women repeat screening for syphilis in the third trimester would be beneficial.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC recommended that screening for syphilis in early pregnancy should continue but did not recommend repeat screening in the third trimester in pregnancy. Read the full UK NSC recommendation on antenatal screening for syphilis.

Reasons

Screening enables early diagnosis and antibiotic treatment to reduce the risk of syphilis passing from mother to baby and any associated health problems. A repeat screening test later in pregnancy was not recommended because it would not be cost effective, costing an estimated £1.8m to prevent one case of congenital syphilis.

Next review date

1 April 2023 to 31 March 2024

1.22 Thrombophilia

The condition

Thrombophilia is a condition where the blood has an increased tendency to form clots. This clotting is called thrombosis. There are many different causes, some of which are hereditary. Some people with thrombophilia have no problems, while others may need to take medication to prevent or treat blood clots.

UK NSC recommendation

Following a review of the evidence against strict criteria, the UK NSC does not currently recommend screening for thrombophilia. Read the full UK NSC recommendation on screening for thrombophilia.

Reasons

Screening is not recommended for newborns, adults or pregnant women because there is not enough evidence:

• about the potential screening tests

• that it would benefit pregnant women, newborns or adults

This was confirmed by the 2021 evidence map.

Next review due

1 April 2024 to 31 March 2025

2. Annual call for topic submissions 2020

The 2020 annual call was the UK NSC’s fifth call for new topics to be considered. It received 4 submissions.

2.1 Biliary atresia

The UK NSC received a proposal to introduce screening for biliary atresia using stool coloured cards. These are cards that explain the colour of stools, ranging from those that are healthy to those that may require further investigation. Biliary atresia was already on the UK NSC list, so was not a new topic.

However, as work was being commissioned to look at biliary atresia in the regular UK NSC review cycle, it was agreed that additional questions on the use of stool coloured cards could be added to the commissioning document.

2.2 Klinefelter syndrome

The submission on screening for Klinefelter syndrome sought the UK NSC’s input as to whether more work should be commissioned.

The UK NSC received a proposal to look at Klinefelter syndrome in 2018. An evidence map was commissioned to scope the volume and direction of the evidence for this condition since it had not been previously considered. The UK NSC considered the evidence map, which looked at 3 important questions, at its meeting in November 2019.

The evidence map only found 5 potential references which related to the incidence and prevalence of the condition. It found no evidence on the 2 other questions, which looked at any type of potential screening test in newborns, children or adolescents. There were no national or international guidelines or recommendations on screening for Klinefelter syndrome.

As the evidence base was limited, the committee agreed that it did not meet the UK NSC’s criteria for a population screening programme and further work should not be commissioned.

2.3 Neuronal ceroid lipofuscinosis type 2 (CLN2)

This was a new topic which the UK NSC had not reviewed before and met the initial triage step. This is the first step of the annual call process where conditions relevant to the UK NSC’s remit are considered.

An evidence map is being commissioned which looks at 3 important questions covering:

• test accuracy

• treatment

• whether there are any national or international guidelines on population screening

2.4 Pressure reducing carotid stenosis in adults over 50

It was noted that the UK NSC had looked at this topic following a 2019 annual call for topic submission and an evidence map had been commissioned. The recommendation of the 2019 evidence map was that further work should not be commissioned. Given the recent work undertaken on this topic and that no new evidence was submitted with the new proposal, it was agreed that no further work should be commissioned at this time.

3. UK NSC membership

3.1 Chair

Professor Robert (Bob) Steele, Professor of Surgery and Head of Division of Surgery and Oncology, University of Dundee

3.2 Vice-chair

Dr Graham Shortland, Medical Director and Consultant Paediatrician, Cardiff and Vale University Health Board

3.3 Members

Claire Bailey, Lead Clinical Nurse Specialist, Breast Screening, SW London Breast Screening Service

Professor Roger Brownsword, Professor in Law at King’s College London and Bournemouth University

Professor Louise Bryant, social scientist

Professor Alan Cameron, Consultant Obstetrician, Queen Elizabeth University Hospital, Glasgow (stepped down from October 2020)

Eleanor Cozens, International Development Consultant, Independent

Dr Paul Cross, Consultant Cellular Pathologist, Queen Elizabeth Hospital Gateshead Health NHS Foundation Trust

Dr Hilary Dobson, Deputy Director of the Innovative Healthcare Delivery Programme, University of Edinburgh (stepped down from April 2020)

Professor Stephen Duffy, Director of the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis and Professor of Cancer Screening, Centre for Cancer Prevention, Wolfson Institute of Preventive Medicine

Professor Gareth R Evans, Consultant in Genetics Medicine, St Mary’s Hospital, Manchester

Jane Fisher, Patient and Public Voice

Hilary Goodman, Midwife, Senior Transformation Manager – Maternity and Children North and Mid Local Delivery System

Professor Alastair Gray, Director, Health Economics Research Centre, Nuffield Department of Population Health University of Oxford

Dr John Holden, Joint Head of Medical Division, Medical and Dental Defence Union of Scotland (stepped down March 2021)

Professor Chris Hyde, Professor of Public Health and Clinical Epidemiology, University of Exeter Medical School

Dr Jim McMorran (GP)

Mrs Margaret Ann Powell, Patient and Public Voice

Dr Anne-Marie Slowther, Reader in Clinical Ethics, Warwick Medical School, University of Warwick

3.4 UK country representatives

Dr Carol Beattie, Senior Medical Officer, Department of Health, Social Services and Public Safety Northern Ireland

Daniel Gascoigne, Head of Screening Policy, Department of Health and Social Care (DHSC)

Dr Tasmin Sommerfield, National Screening Programmes, Scottish Government

Dr Heather Payne, Consultant Paediatrician, Senior Medical Officer for Maternal and Child Health, Welsh Government

Niall O’Higgins, Chair of the National Screening Advisory Committee, Republic of Ireland

Alan Smith, Deputy CMO, Department of Health, Republic of Ireland

3.5 Observers

Nimisha de Souza, DHSC, Screening Policy Team, Global and Public Health Group, (joined 2020)

Lucjan Kaliniecki, DHSC, Screening Policy Team, Global and Public Health Group (joined 2020)

Ardiana Gjini, Public Health Wales

Deborah Tomlinson, NHS England and Improvement

Sandra Anglin, NHS England and Improvement

Alison Cowie, NHS England and Improvement

David Elliman, Clinical Lead for NHS Newborn Infant Physical Examination Programme and NHS Newborn Blood Spot Screening Programme

Ros Given-Wilson, Chair of Adult Reference Group

Sharon Hillier, Director of Screening Division, Public Health Wales, Chair of Fetal Maternal and Child Health Group

Nick Hicks, National Co-ordinating Centre for HTA

Mariejka Beauregard, Screening Fellowship

Billie Moores, Public Health England

Karen Emery-Downing, Public Health England

Caroline Vass, Public Health Consultant

Gareth Brown, Director of Screening for Scotland

3.6 Presenters

Catherine Joynson, ethics and stakeholder engagement consultant, PHE Screening and UK NSC

Professor Jim Bonham – laboratory lead, Newborn Blood Spot Screening Programme

Professor James Leonard – professor of paediatric metabolic disease, Institute of Child Health, London

3.7 Membership changes

Dr Hilary Dobson stepped down in April 2020

Prof Alan Cameron stepped down in October 2020

Dr John Holden stepped down in March 2021

Hilary Goodman’s employer changed but she remains a midwife on the committee

Louise Bryant’s title changed to Prof Louise Bryant (professor in psychological and social medicine)

3.8 Observer changes

Daniel Gascoigne became the DHSC representative

Tasmin Sommerfield became the Scottish representative