Memorandum submitted by the Association
of Medical Research Charities (AMRC)
The Association of Medical Research Charities
represents 110 registered charities which have as a principal
activity the support of medical research in the UK. In 1999-2000
these charities funded more than £500 million in UK based
research activity in addition to providing funds for buildings
and other capital and infrastructure projects. Of this total,
50 per cent is accounted for by the Wellcome Trust. A list of
member charities is attached as an annex.
The university sector is the principal beneficiary
of charity funding for medical research and accounts for over
70 per cent of the funding. This reflects the fact that universities
undertake a very wide range of research relevant to medicine and
are able to attract funding for almost every field of research.
The charity sector in medical research is characterised
by the fact that half the funding is for disease specific research.
Prominent in the charity sector is the field of cancer research
but the largest area is general medical research, principally
funding from the Wellcome Trust. Charities fund a range of research
relevant to their disease or objects, some of which will be basis
or "blue skies", some strategic and some applied.
The charity sector, at least in part, reflects
the public's priorities in medical research and provides a stream
of funding which is significantly different from the statutory
and commercial sectors. It is the principal or major source of
funding for research in a wide range of areas, including cancer,
ophthalmology, cystic fibrosis, diabetes psychiatry and heart
disease. It is important therefore that the contribution of the
charity sector is viewed alongside other sources of funding for
UK research though it is equally important that the different
roles are mutually understood and that complementarity is encouraged
by Government policies.
Charities support research through a very wide
range of funding schemes. There are broadly three types of support:
responsive funding (where the charity agrees to support a research
institute of an individual to undertaken the research that they
have themselves identified that they wish to undertake); partnership
support for research infrastructure or longer term programmes
of research (such as unit funding, buildings, endowed chairs)
in HEIs or the NHS where funding is provided for major initiatives
which meet the objectives of both the charity and the host institution;
and research supported in charities' independent institutes (eg
ICRF). It is very unusual for AMRC charities to directly commission
Members of AMRC believe that peer review is
essential in order to ensure the quality of the work being funded
and to maintain distance between those who disburse funds and
those who receive them. It is a condition of membership of AMRC
that a strict and accountable process of peer review is used for
all awards and the operation of this process is regularly monitored
by the AMRC.
In responding to the call for evidence, the
Association of Medical Research Charities (AMRC) has focused on
only the issues it considers relevant to its field of medical
research and there are some aspects of the Inquiry on which it
would not wish to comment.
The annual publication of Forward Look
has not made an obvious impact and AMRC remains unclear as to
its intended audience and users.
AMRC considers that although the report offers
an overview of the Government supported research base it does
not adequately reflect the picture as a whole. Poor quality and
lack of consistency in data included in the Forward Look
on non-government funding gives a misleading picture of the overall
research base, especially in medicine and health.
AMRC believes that this serves to minimise the
impact of non-government funders, particularly the non-profit
sector, and therefore provides a weak basis for policy making.
Government could facilitate better decision-making by commissioning
an annual Forward Look that took a wider view of the research
On balance AMRC believes Technology Foresight
has helped in focusing Government departments and the scientific
community on future directions for research and transfer to practical
Although the White Paper emphasised the importance
of quality of life as well as wealth creation, AMRC feels that
often Government has lost sight of the wider public benefit accruing
from research and has a tendency to focus only on issues of wealth
A preoccupation with technology transfer is
an example of this: in medical research especially, much of the
output is not commercially exploitable but nevertheless requires
mechanisms to be in place if maximum potential is to be gained
Government should also consider why venture
capital for start-up companies is relatively poor in the UK compared
with the USA. Part of this is a greater risk aversion in the UK
and the difference in taxation between the two countries.
The change from Advisory Council on Science
and Technology to Council on Science and Technology was presumably
to ensure that Government played a more direct role in directing
It remains an important function of Government
to have a good overall picture of the research base, emerging
priorities and issues of concern. AMRC believes it is especially
important that there is a body responsible for maintaining a UK-wide
However, AMRC has concerns about the way in
which members of committees and advisory groups are selected and
appointed and considers that the involvement of authoritative
stakeholder groups in making recommendations for membership may
enable DTI/OST to include a better balance of perspectives.
AMRC considers that broader and ongoing networks
of contact with stakeholders should be developed by OST rather
than the current mechanisms, which depend on a limited range of
broad subject committees.
Since the introduction of the 1993 White Paper
Realising our potential there has undoubtedly been a greater
emphasis on technology transfer within the science base which
may, at least in part, be due to the recommendations of the White
Paper. A number of changes were already occurring in higher education
and it is not clear that these or the gathering momentum were
due to the White Paper.
Charities recognise that over the last eight
years higher education technology transfer has improved and there
are some notable pockets of expertise and success. However, some
difficulties remain: in many universities the facility for technology
transfer remains problematic and is not recognised as a high enough
priority or is perceived as against the culture of the sector.
There are also differences of view with regard to the community
of users that university technology transfer exists to serve.
There is a shortage of university expertise
mirrored in a lack of clarity about what support systems are available
through Government and little awareness of best practice elsewhere.
AMRC supports strongly the principle that inventors should benefit
from their work but wonders whether the current mechanisms in
HEIs focus too strongly on short term gains. There is much further
work to be done in higher education and government in considering
how these issues can be overcome.
The 1993 White Paper did not foresee the range
of issues that have arisen from the globalisation of research
and variations in patenting law. For example, the significant
differences in UK and US patent law are important and confusion
can act against innovation and successful technology transfer.
One issue for future consideration by Government is the question
of a "grace period" for patenting.
It has been useful for there to be a single
point of contact for all the research councils and the appointment
of the director general of the research councils built upon this.
Clearly the Government has a responsibility
to manage the research councils but AMRC would stress that it
believes the focus of Government strategy should be on enabling
AMRC considers the creation of a Minister for
Science and Technology and the Office of Science and Technology
has been very positive. They have provided a focus and voice for
science within Government and wider recognition of the important
role Government has in creating the right environment for science
to thrive in the UK.
AMRC considers it is primarily Government's
role to support a science base that enables scientists to engage
effectively and innovatively in research and not to direct that
research effort in its totality.
While AMRC would encourage the Government to
identify strategic initiatives or needs that require central leadership,
AMRC believes it is probably undesirable for Government to become
increasingly involved in directing the research itself.
Government should focus on mechanisms, which
will enable research to be undertaken, and the fruits of research
to be transcribed into practical outcomes.
Increased Governmental involvement in the way
funding for research is used has had a perverse influence in that
Government takes on an increased accountability for the research
which is undertaken.
Confusion about intellectual property law is
one of the possible disincentives that might drive research overseas.
The pharmaceutical industry in the UK does itself
undertake much first class research and AMRC considers it is important
that OST works to ensure that the research environment continues
to encourage this investment and to be aware that regulations
introduced by other Government departments may create disincentives
for research investment. In medical research, issues that concern
both the charities and industry include difficulties in organising
large scale clinical trials and animal licence procedures.
The AMRC considers that despite Government efforts
it is clear that it has not achieved its aspirations to improve
the public understanding or confidence in science contained in
the White Paper.
The public understanding of science has not
been helped by adverse media comment on the high profile cases
of cloning and GM foods.
Government should develop a better understanding
of its own role and credibility in developing public confidence
in science. The recent House of Lords report on Science and Society
makes many valuable recommendations for Government and others
and AMRC hopes that the Government will give them serious consideration.
It is of course important that Government consults
experts when drawing up its pronouncements but this must be done
in the context of the reality of scientific knowledge.
The AMRC considers that there are some non-governmental
organisations which are more trusted by the public for their contribution
towards science-based decision making and that Government should
develop mechanisms for working with such bodies rather than seek
to direct public understanding of science initiatives itself.
AMRC suggests that consideration is given as to how OST might
facilitate a wider range of PUS activities through partnerships
and funding schemes.
AMRC and the medical research charity sector
can play a very particular role in helping build public trust
and confidence in science because of their direct public support
and their focus on the positive use of science for the alleviation
of suffering and improvement in health. They are seen as independent
of Government (politics) and industry (profit) and do not speak
on behalf of the scientists themselves. This unique position is
one that the Government could note.
Government funding of polls in public awareness
and understanding of science has been very helpful and further
work along these lines should be encouraged.
AMRC would wish to suggest that civil servants
from DTI/OST might be seconded for a period of time to AMRC or
member charities in order to improve understanding of differing
roles and perspectives and to foster greater collaboration on