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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