National Health Screening - Science and Technology Committee Contents

1  Introduction

1. Screening involves systematically approaching apparently healthy, non-symptomatic people to ask if they wish to be tested for a serious disease or condition. Grounded in the principle that prognosis can be improved by intervening earlier, the primary purpose of screening is to improve health outcomes by detecting and treating disease at an early stage.

2. In the UK, screening took off in 1950s with the use of mass radiography to identify tuberculosis in adults and the application of ferric chloride solutions to detect phenylketonuria—a rare metabolic, genetic disorder—in newborns.[1] Today, the National Health Service (NHS) offers screening for a range of conditions and diseases covering all life stages, from antenatal and newborn screening through to adulthood. Each year approximately 11 million people in England are invited to participate in a screening programme[2] at a total annual cost of around £348 million for the breast[3], cervical[4] and bowel[5] cancer screening programmes, with an additional £400 million spent on a suite of non-cancer screening programmes.[6] NHS programmes are characterised by the commitment to guide individuals through each stage of the process, from the test through to referral, further investigations, and treatment for those who require it.[7]

3. Although screening has been described as an "admirable method of combating disease", debate and disagreement about its practice has never been far away.[8] Over 45 years ago, following controversies about cervical screening, the World Health Organization commissioned James Wilson (Ministry of Health, London) and Gunner Jungner (Sahlgren's Hospital, Sweden) to set out "the principles and practice of screening for disease in a clear and simple way".[9] According to Wilson and Jungner, applying the theory underpinning screening was "far from simple" since it required a delicate balance to be struck between "bringing to treatment those with previously undetected disease and […] avoiding harm to those persons not in need of treatment".[10] Such harms include receiving a false positive or false negative result; adverse psychological and behavioural effects; negative impacts on employment and insurance premiums; and over-diagnosis, whereby abnormalities are identified that would not have become clinically apparent, or caused harm, in the individual's lifetime.[11]

4. Wilson and Jungner's treatise explaining the complexities of this "deceptively easy"[12] field helped shape the governance and practice of screening across the world.[13] However, the tension between maximising benefit and minimising harm, identified by the authors in 1968, has persisted throughout the intervening years, most recently in the context of screening for breast cancer.[14] Calls for health screening to be expanded to cover other conditions, on the basis that more people could benefit, have consequently been challenged by those who question the efficacy of existing programmes, the evidence upon which they are based, and the risks they may pose to participants. We therefore decided to conduct a wide-ranging inquiry examining how evidence is used as a base for national health screening programmes, with a particular focus on how effectively the risks and benefits of screening are communicated to the public.

Our inquiry

5. On 17 December 2013, we announced our inquiry on National Health Screening and sought written submissions addressing the following points:

a)  What evidence are the national health screening programmes based on, and how regularly is the evidence base reviewed?

b)  Could the evidence base and sources of scientific advice to Government on health screening be improved? If so, how?

c)  How effectively are the potential risks and benefits of health screening communicated to and understood by the public?

d)  How does health screening provided in the UK through the NHS compare with that offered by other countries?

We received 50 written submissions and took oral evidence from 19 witnesses including:

·  Academics with expertise in screening and novel screening technologies;

·  Representatives from expert medical bodies;

·  Patient advocacy groups;

·  Officials from Public Health England, Public Health Wales, and the UK National Screening Committee;

·  The Government, represented by Jane Ellison MP, Parliamentary Under-Secretary of State for Public Health (hereafter "the Minister") and Professor David Walker, deputy Chief Medical Officer for England, Department of Health and Chair of the UK National Screening Committee.

We would like to thank everyone who contributed to the inquiry.

6. This report focuses primarily on those antenatal, newborn and adult screening programmes that are delivered free of charge by the NHS. Background information on screening in the UK is presented in Chapter 2, while Chapter 3 examines how the evidence base for a screening programme is reviewed and considers if a robust, formal procedure is in place. Chapter 4 looks at how the risks and benefits of screening are communicated, with a particular focus on the design and delivery of public information materials, as well as the use of statistics. Finally, Chapter 5 considers the governance and status of the UK National Screening Committee (UK NSC) and its role in providing policy advice on screening to health Ministers. During the course of our inquiry, the UK NSC announced an independent review of its role, terms of reference and membership to be conducted by a working group comprised of screening experts, including the Chair of the UK NSC. This report therefore identifies matters for the independent review to consider alongside its own findings.

1   Walter Holland and Susie Stewart, Screening in disease prevention: what works? (London, 2005), p 1 Back

2   Public Health England & NHS England, Immunisation & Screening National Delivery Framework & Local Operating Model, (May 2013), para 1.2.1 Back

3   Public Health England, 'How much does the breast screening programme cost?', accessed 8 July 2014 Back

4   Public Health England, 'About cervical Screening: how much does the programme cost and how is it funded?', accessed 8 July 2014 Back

5   Public Health England, 'How much does bowel screening cost?', accessed 8 July 2014 Back

6   UK National Screening Committee & NHS Screening Programmes, Annual Report: Screening in England 2011-2012, p 10 Back

7   NHS0040 [Public Health England], para 2.3 Back

8   James Maxwell Glover Wilson and Gunner Jungner, Principles and Practice of Screening for Disease (Geneva, World Health Organization, 1968), p 7 Back

9   James Maxwell Glover Wilson and Gunner Jungner, Principles and Practice of Screening for Disease (Geneva, World Health Organization, 1968), p 7 Back

10   James Maxwell Glover Wilson and Gunner Jungner, Principles and Practice of Screening for Disease (Geneva, World Health Organization, 1968), p 26 Back

11   Council of Europe Committee of Ministers, Recommendation No.R (94) 11 of the Committee of Ministers to Member States on Screening as a Tool of Preventative Medicine. Back

12   James Maxwell Glover Wilson and Gunner Jungner, Principles and Practice of Screening for Disease (Geneva, World Health Organization, 1968), p 26: Back

13   NHS0013 [Climb] Back

14   See, for example: Harald Weedon-Fekjær, Pål R Romundstad and Lars J Vatten, "Modern mammography screening and breast cancer mortality: population study", British Medical Journal, 17 June 2014, BMJ 2014;348:g3701; Anthony B Miller, Claus Wall, Cornelia J Baines, Ping Sun, Teresa To, Steven A Narod, "Twenty five year follow-up for breast cancer incidence and mortality of the Canadian National Breast Screening Study: randomised screening trial", British Medical Journal, 11 February 2014, BMJ 2014;348:g366 Back

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Prepared 29 October 2014