Submission to the Government consultation “Science and Innovation:
Working Towards a Ten-Year Investment Framework”.
GeneWatch UK, April 2004.
GeneWatch UK is a policy research group concerned with the science, ethics, policy and
regulation of genetic technologies. Our submission therefore emphasises the role of these
technologies in agriculture, health and sustainable development. However, we feel that
the points we make have broader significance for science and technology in general.
We strongly welcome the Government’s decision to take a strategic view of its
investment in science over the next ten years. Government has a central role to play in
ensuring that taxpayer’s money is spent wisely and that public need and benefit is
considered when research funding decisions are made. We also welcome the important
recognition that the research base must respond to the needs of public services as well as
the economy.
We make a number of general comments and recommendations below, rather than
answering the 20 questions posed in the consultation document.
Our main conclusion is that Government should not simply hand research investment
decisions over to commercial companies (for example by providing ‘matching funds’ for
commercially-driven research projects), but develop its own investment strategy which
serves the public interest. It is critical to involve the public in developing this strategy so
that:
(i) important research gaps and priorities that will not otherwise receive sufficient
investment are identified and funded;
(ii) public concerns about particular technologies or approaches are identified at an early
stage and research strategies adapted accordingly;
(iii) the research needs of public bodies (such as the NHS) and neglected constituencies
(such as the socially excluded) are met;
(iv) there is more accountability for how taxpayers’ money is spent;
(v) public trust in science and the Government’s own ability to make informed decisions
is improved.
1. The need to acknowledge a broader remit for science
The strategy proposed focuses largely on a single narrow objective for science policy –
namely to develop new technologies to improve economic prosperity and quality of life.
Whilst this is an undeniable potential benefit of scientific research, science plays a much
wider role in society by developing our understanding of the world around us.
Science is commonly used to try to predict the impact of different decisions, by
Government and others, including the potential costs and benefits to the environment and
human health. Science therefore plays a key role in the Government’s ability to manage
risk1 and may inform decisions on, for example:
 Policy and strategies in health, agriculture and energy;
1




The pros and cons of adopting particular technologies;
Regulatory frameworks and their implementation;
The financial risks of making particular R&D and investment decisions;
The cost-effectiveness of different approaches to achieving policy goals.
By focusing on innovation and the need for links with business, the consultation
document downplays the many important roles for science which are of no interest to
commercial companies, or which may conflict with commercial objectives. For example:
 Research and development of new treatments for ‘neglected diseases’ and
development of ‘intermediate technologies’ for poor countries, where the market
provides no incentive for commercial investment;
 Independent assessment of evidence of harm relating to commercial products or
processes;
 Evidence supporting public health measures which may impact negatively on the
market for some industries (e.g. tobacco, alcohol or fast food).
Recommendation: The Government should give fuller consideration to the role of
science in informing decisions and the institutional structures needed to best fulfil
this role.
2. The need for ‘joined-up’ Government
Commercial companies typically take a strategic approach to R&D funding, identifying
areas where they expect to make a good return on their investment. The Government
should play a similar role in identifying areas of research which may provide significant
public benefit or help to avoid harm. This implies a need for ‘joined-up Government’
where policies in health, agriculture and sustainable development inform the research
investment decisions that are made.
The inclusion of a reference to the Wanless review is welcome and illustrates how health
policy decisions and priorities can and should influence research investment strategies.
Public health research is obviously an area where there is little incentive for commercial
investment, but enormous potential benefits to the taxpayer and to quality of life. The
King’s Fund has made the same point more broadly in relation to the lack of research
directed towards the needs of the NHS2. In some cases there is simply no commercial
incentive to undertake particular types of research, leaving important gaps. In other cases,
the most cost-effective health strategies (bringing the greatest public benefit) may
conflict with commercial strategies that seek to maximise profits.
Major Government purchasers, such as the NHS, should not be forced simply to react to
new technologies as they arise. They can and should also play a role in shaping research
investment decisions so that they meet public needs. This can apply directly to public
research funds, but the Government, as a major customer of healthcare products, can also
influence the research strategies adopted by commercial and charitable sector by playing
a leadership role.
2
There is also a danger that by allowing science to be driven by a particular commercial
agenda, it can, in the longer run, become excessively narrow in scope, stifle innovation
and leave us with a knowledge base that is inadequately prepared to deal with changing
environmental or social circumstances. This problem has been seen with the intellectual
and economic commitment to the development and use of genetic modification in
agriculture, loss of public plant breeding efforts, and privatisation of genetic resources
that started in the 1980s. In the 2000s it has become clear that an agricultural science
base centred on GM has not been able to respond to the demands for a more sustainable
agricultural system or answer wider questions about environmental and human safety
posed by the public.
The focus on molecular biology facilitated commercialisation of certain sectors of the
agricultural production system but has left the knowledge base of other sectors
impoverished. In turn, this contributes to selective economic gain for those supported
sectors. Sustainable agricultural systems, such as organic production, can be as equally
wealth generating as chemically based systems, although the distribution of the wealth
will be very different. A diverse knowledge base is required to support these different
sectors, rather than creating an artificially narrow base favouring one area of commercial
interest. The fashion for biotechnology certainly led to negative outcomes for society and
industry and the emerging fashion for nanotechnology could lead us to suffer the same
fate. Diversity should be an important principle in the science investment framework.
Recommendation: The investment framework adopted should not be purely scienceled or business-led but should include processes to allow the public interest and
needs of public bodies to influence the research agenda. It should also encompass
diversity as an important principle to encourage innovation, provide a more
balanced knowledge base for society and to ensure all sectors can benefit from new
developments in science and technology.
3. The need for a realistic and transparent appraisal of the relative benefits of
different research strategies
It is an important part of science to base research strategies on the best available existing
knowledge of how physical, biological and environmental systems work. This should not
mean the elimination of risky, ‘long-shot’, or blue-skies research, but does mean that
strategies need to adapt to increasing knowledge and not pursue trendy theories at the
expense of more credible research.
The best current example of poor use of resources is the decision to fund the UK
Biobank. The biobank’s scientific protocol is not supported by the majority of genetic
epidemiologists and is based on an out-of-date and misleading view of the role of genes
in common diseases3,4,5. The underlying health strategy (“genetic prediction and
prevention”) will not work for most diseases in most people6 and has cost implications
which have been described as “staggering”7. The decision to fund the setting up of the
biobank infrastructure inevitably implies an open-ended commitment to future funding.
3
The biobank’s scientific protocol was never properly peer-reviewed, its start-up funding
having been allocated in a separate stream outside the normal funding processes8.
Similarly, research on xenotransplantation (for example, transplanting pig hearts to
humans) has been driven more by hype than by reality. There is little realistic prospect
for overcoming immune rejection of animal organs, the compatibility of animal organs
with human physiology is highly questionable and there is known to be a risk of
transferring viruses from animal to human populations, which is difficult to justify9.
Uncritically evaluated claims for the power of genomics are, therefore, driving research
agendas in unproductive directions. This is also becoming evident in DEFRA’s
development of sustainable farming and food research priorities. A workshop description
considering ‘the impact of global and technological drivers on farming and food’ says
that ‘consumers will also be more aware of these technologies and diets may be
individually tailored based on genetic risk’, even though this approach has little or no
foundation in science except the science of marketing. The expectations raised by such
claims and their failures will not only lead to false investments but also a erosion of
confidence in science and technology.
There has been a welcome expansion of multi-disciplinary research into the impacts of
new science and technology, such as the Innovative Health Technologies Programme of
the ESRC and its new Centres for Genomics. The inclusion of social research projects in
the remit of the Genetic Knowledge Parks is also welcome. However, Government’s
ability to draw on this expertise seems sadly lacking. Last year’s White Paper on
Genetics in the NHS10, for example, involved no assessment at all of the potential costs
or benefits of using genetic tests to seek to prevent common diseases or adverse drug
reactions or the difficulties already experienced in clinical practice in assigning
individuals to ‘high, medium or low’ genetic risk categories for breast cancer. There is
also a danger that the ability of the Knowledge Parks to assess these new technologies is
compromised by the partnerships that they are making with genetic testing companies
and their commitment to patenting and commercial application of the technology.
Government needs to develop the ability to make its own assessment of R&D investment
risk, on the taxpayer’s behalf, so that it does not simply subsidise failing business
strategies. It must also recognise that the US market for innovative products is often very
different from the European one, and European consumers may not fall for misleading
marketing strategies such as selling skin cream11 or breakfast cereals12 that are
supposedly tailored to an individual’s genetic make-up. The biotech industry has recently
made a case for more Government support13. However, it requires this support because
investment has dried up due to the fact that few investors have made any money14,15.
Similarly, drug discovery has slowed since the Human Genome Project16 and many
pharmaceutical companies now regret their over-investment in technologies such as gene
databases17. If the Government is to subsidise industry research strategies it needs to be
able to make an independent assessment of their likely success18. Maintaining the
independence of science and implementing policies to prevent conflicts-of-interest is
4
therefore critical to developing an accountable and effective Government research
strategy (see below).
In general, the Government needs the ability to assess the pros and cons of different
research projects in a more transparent and objective manner, taking into account their
scientific merit, social implications, and the views of the public (see below).
Recommendation: The desire to compete with other countries on commercialisation
of the human genome or other scientific projects should not be allowed to over-ride
a realistic and transparent appraisal of the science, costs and benefits of particular
research projects.
4. The need for public involvement and public accountability
Public involvement can significantly improve research investment decisions by
identifying important public needs and concerns before significant funding, training and
infrastructure commitments are made. One example of public involvement in research is
the Alzheimer’s Society’s award-winning “Quality Research in Dementia” programme (a
unique example of a ‘consumer-led’ research programme, which has identified new
research priorities)19. Another is the “DIY Citizens’ Jury” conducted by the Policy Ethics
and Life Sciences Research Institute (PEALS) at the University of Newcastle upon Tyne,
which investigated the issue of how to prevent falls in the elderly20.
However, such positive examples are rare and the underlying shaping of the science
agenda remains largely closed to public scrutiny. Public input is critically important to
decide in what areas of innovation is welcome and economic growth to be encouraged21.
Unless accountability is introduced, science will not be able to gain the trust of the
public. Research investment will also continue to be wasted by failing to take account of
public needs and concerns (e.g. the massive investment in GM crops for which there is no
consumer demand). Research on public attitudes successfully identified public concerns
about GM crops and food22 and might have led to investment in alternative research
strategies had these concerns been taken seriously at an early stage.
One obvious example of a research area which could benefit significantly from public
involvement in funding decisions is preventive health, since public reactions and
compliance are critical to the success or failure of different public health strategies. This
means broadening public involvement strategies beyond patient groups to include the
public as a whole.
Recommendation: The Government should cease its reliance on committees of
industry and scientific representatives as its key source of information on what
research to fund. Public and democratic involvement in setting research priorities is
critical to making wise research investment decisions and regaining public trust.
5. A reappraisal of Intellectual Property Rights and measures to limit conflicts-ofinterest are needed.
5
Research has shown that whilst most people are positive about science, support is not
uncritical and a majority agree with statements such as “The independence of science is
often put at risk by the interest of their funders,” and “The funding of science is
becoming too commercialised”23.
It is particularly difficult to justify the dominant role of the tobacco and food industries in
academic health research, where clear conflicts of interest can arise. For example, a 1997
survey identified only one UK medical school that had not accepted tobacco funding
from 1988-199424 and sponsorship of academic researchers by the food industry is
ubiquitous25. Problems will arise when any industry dominates research funding on the
health, safety or environmental impacts of its own products or processes.
Commercial interests can also significantly distort funding priorities. For example, as the
Nobel Prize-winning geneticist Sydney Brenner has noted, research into the genetics of
obesity (a major preoccupation of the pharmaceutical industry) is unlikely to be either an
effective or affordable means of tackling the growing epidemic of obesity26.
Patents can have positive or negative impacts on research and innovation. The granting
patent claims on gene sequences allows unprecedented monopolies on scientific
discoveries and is widely regarded to have had negative impacts on scientific research27.
Recommendation: The Government should encourage academic institutions to
adopt a code of ethics that requires them to both vet and declare all funding sources
and create a register of interests28. The Research Councils should adopt Cancer
Research UK’s Code of Practice, which seeks to keep its funds separate from funds
derived from the tobacco industry29 and explore the options for developing similar
codes in other areas where significant conflicts of interest may arise. The practice of
patenting gene sequences should end.
————————————
For further information contact:
GeneWatch UK
The Mill House
Manchester Rd
Tideswell
Buxton
Derbyshire
SK17 8LN
Tel: 01298-871898
Fax: 01298-872531
Email: mail@genewatch.org
Website: www.genewatch.org
6
Cabinet Office Strategy Unit (2002), Risk: Improving Government’s Capacity to Handle Risk and
Uncertainty.
2
Harrison A, New B. Public interest, private decisions: health-related research in the UK. London; The
Kings Fund; 2002.
3
Barbour, V (2003), UK Biobank: a Project in Search of a Protocol?, The Lancet, 361, 1734-1738.
4
Clayton, D, McKeigue, PM (2001), Epidemiological Methods for Studying Genes and Environmental
Factors in Complex Diseases, The Lancet, 358, 1356-1360.
5
Wright, AF, Carothers, AD, Campbell, H (2002), Gene-Environment Interactions – the Biobank UK
Study, The Pharmacogenetics Journal, 2, 75-82.
6
Baird, P (2001), The Human Genome Project, Genetics and Health, Community Genetics, 4, 77-80.
7
Col. NF (2003), The use of gene tests to detect hereditary predisposition to chronic disease: is costeffectiveness analysis relevant? Medical Decision Making, 23, 441-448.
8
http://www.publications.parliament.uk/pa/cm200203/cmselect/cmsctech/132/1320
9
Bach, F. (1998) Nature Medicine 4: 142-145.
10
Department of Health (2003). Our Inheritance, Our Future: Realising the Potential of Genetics in the
NHS. Cm5791-II.
11
http://www.lab21.com/web .
12
Check, E (2003). Consumers Warned that Time is Not Yet Ripe for Nutrition Profiling. Nature, 462, 107.
13
BIGT(2003). Bioscience 2015: Improving National Health, Increasing National Wealth. Report to
Government by the Bioscience Innovation and Growth Team.
14
Biotech Becalmed. Leader. Financial Times. 18 Nov 2003.
15
Journal editor offers sobering picture of struggling biotech sector. The Business Review. 3 November
2003.
16
Coghlan, A. (2002) Gene Data Slows Drug Discovery. New Scientist, 21st September 2002.
17
What’s Next for Pharma? Business Week Online. 5 Jan 2004.
http://www.businessweek.com/technology/content/jan2004/tc2004015_0769_tc074.htm .
18
Rasnick, D (2003). The Biotechnology Bubble Machine. Nature Biotechnology, 21, 355-356.
19
http://www.qrd.alzheimers.org.uk .
20
http://www.peals.ncl.ac.uk/publications/DIYFinalVerdict.pdf .
21
Mayer S. Science out of step with the public: the need for public accountability of science in the UK.
Science and Public Policy 2003; 30(3):177-181.
22
Grove-White, R, Macnaghten, P, Mayer, S, Wynne, B ((1997), Uncertain world. Genetically Modified
Organisms, Food and Public Attitudes in Britain. Lancaster University, March 1997.
23
Poortinga, W and Pidgeon, N (2003). Public Perceptions of Risk, Science and Governance: Main
Findings of a British Survey of Five Risk Cases. Centre for Environmental Risk, University of East Anglia.
January 2003.
24
Lewison G, Dawson G, Anderson J. Support for UK biomedical research from tobacco industry. Lancet
2003; 349: 778.
25
Nestle, M (2001). Food Company Sponsorship of Nutrition Research and Professional Activities: A
Conflict of Interest? Public Health Nutrition, 4(5), 1015-1022.
26
http://news.bbc.co.uk/1/hi/health/3200873.stm .
27
Nuffield Council on Bioethics (2002). The Ethics of Patenting DNA. July 2002.
28
The Missenden Centre for the Development of Higher Education (2002). The Missenden Code of
Practice for Ethics and Accountability. Available from: URL:
http://www.missendencentre.co.uk/docs/MissCode.pdf . Accessed: 2003 Aug 14.
29
Cancer Research UK. Preventing lung cancer: isolating the tobacco industry. 2002 Jul. Available from:
URL: http://www.cancerresearchuk.org/news/publicaffairs/tobacco/tactics .
1
7