APPENDIX 39
Memorandum from the Association of Medical
Research Charities
The Association of Medical Research Charities
has over 100 member charities who together contributed £660
million to medical research for 2002-03 in the UK. They are a
major source of funding for research in all areas of medicine
in the UK.
AMRC welcomes this consultation and the opportunity
to respond. AMRC has consulted a number of its member charities
on this response as well as its Scientific Advisory Committee.
The answers below relate to the use of human embryos in research
from the perspective of AMRC and its member charities.
INTRODUCTION
During the discussions leading up to the extension
of the Human Fertilisation and Embryology Act 1990, AMRC supported
the continuation of research on human embryos for therapeutic
purposes. However, AMRC remains opposed to human reproductive
cloning.
AMRC and its member organisations recognise
there are important ethical issues that must be taken into account
and considers it is important that there is continuing open and
informed public debate about this area of research. AMRC welcomes
a number of initiatives for public engagement on this issue, such
as the formation of regional stem cell networks by leading universities
and research institutes.
The AMRC supports the Government's proposals
for providing a strict and rigorous regulatory framework in which
medical researchers can carry out their work.
NEW DEVELOPMENTS
AMRC has remained engaged in the continued public
debate since the regulations were enacted. The issue of embryonic
stem cell research was debated in the media and within AMRC particularly
during the time that the European Directive on Tissues and Cells
was being finalised. The Science and Technology Committee may
be aware that amendments were put down to this Directive which
would have seriously hindered research using human embryos—but
these amendments were not passed. During that time we established
that AMRC member charities remain enthusiastic about the potential
for all lines of stem cell research, including those derived from
human embryos. A small number of our member charities are now
actively involved in funding research in this area.
AMRC would like to bring to the attention of
the Science and Technology Committee the opinion poll conducted
by MORI during 2003 which showed that around 70% of the British
public support the use of human embryos for medical research to
find treatments for serious diseases and for fertility research—exactly
what is currently allowed.
AMRC also supports the establishment of the
stem cell bank. This is important not only for establishing high-grade
cell lines for research and for eventual therapies, but it may
also play a role in reducing the need for new embryos for research.
AMRC notes the announcement by scientists in
Korea that they have for the first time cloned a human embryo.
AMRC welcomes in particular the responsible manner in which this
was announced, and the clearly stated opposition of the Korean
group to human reproductive cloning.
DEVELOPMENTS IN
LICENSING
AMRC welcomes the development of the research
section of the HFEA website. As of 18 May 2004, this lists over
25 licences awarded for the use of human embryos for research—with
accompanying lay summaries—a degree of openness which can
only be helpful.
AMRC has not been so impressed with the consultation
from the HFEA on human embryo research licence fees. This consultation
states that it is important that the HFEA has in place robust
licensing and marketing systems which give confidence that the
statutory controls are being effectively implemented. AMRC would
agree with this but would point out that this should give scope
for judgement as to just how rigorously legislation is enforced.
Licensing and inspection should not involve a heavy-handed approach,
but should start with the assumption that scientists are applying
to carry out such work for the public benefit and with integrity.
AMRC is concerned at the total expenditure proposed
by the HFEA on research licensing, which would appear to average
out at around £6,000 for each licence. One of the options
they give is for a flat rate at this level—which AMRC considers
may be excessive. AMRC would like to see greater justification
for this level of expenditure. This should include how the HFEA
intends to meet the five principles set out by the Better Regulation
Task Force in 1997, which include proportionality, accountability,
consistency, transparency and targeting.
AMRC would welcome some examination of the HFEA
proposals by the Science and Technology Committee. AMRC would
like to draw the attention of the Science and Technology Committee
to the field of research involving animals where there have been
considerable problems of bureaucracy and excessive paperwork related
to licensing and inspection. We do not wish to go down that route
for embryonic stem cell research.
SUMMARY
AMRC does not consider that a great deal has
changed in principle since the passage of the regulations in 2001.
AMRC remain supportive of this area of research. AMRC wishes to
see continued openness by all institutions involved, regular informed
debate, and appropriate licensing and inspection arrangements
at a reasonable cost.
June 2004
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