Submission from the Motor Neurone Disease
1.1 Few disorders are as devastating as
Motor Neurone Disease (MND). It progressively attacks the body,
removing the ability to walk, talk or feed oneself, but the intellect
and senses usually remain unaffected. There are estimated to be
around 5,000 people living with MND in the UK. Half will die within
14 months of diagnosis.
1.2 The MND Association's vision is "A
World Free of MND" and we will fund and promote research
to bring about an end to the disease. Until that time we will
do everything we can to enable everyone with MND to receive the
best care, achieve the highest quality of life possible and to
die with dignity.
2.1 The MND Association is concerned that
current Government proposals for the regulation of hybrid and
chimera embryos will have a negative impact on research into this
2.2 Somatic Cell Nuclear Transfer (SCNT)
techniques offer scientists a potential source of motor neurons
for research studies that are otherwise currently impossible to
perform, but progress in this area is hampered by a lack of human
eggs. The use of animal eggs and with human DNA offers an alternative
source of motor neurons for research.
3.1 The MND Association welcomes the Science
and Technology Committee's inquiry into current Government proposals
for the regulation of hybrid and chimera embryos.
3.2 We fully endorse the Committee's recommendation
stated in the White Paper that revised legislation should permit
the creation of hybrid and chimera embryos for research provided
they are destroyed in line with the 14 day rule applicable to
3.3 However, we do feel that it is important
for the Committee to provide clear definitions of the various
terms being used, to avoid potential misinterpretation of their
findings. A chimera describes an embryo containing a mix
of cells of different species, whereas the term hybrid suggests
a mixing of chromosomal DNA. SCNT using an enucleated animal egg
fused with human somatic cell, generates a cell that is most commonly
termed a cybrid.
3.4 The researchers propose to use cybrid
embryos (with chromosomal DNA from humans but mitochondrial
DNA from the animal) for MND research.
4. WHY ARE
4.1 MND causes nerve cells that control
movement to die. At present, there is no viable way of isolating
and studying living human motor neurons in the laboratory. This
greatly inhibits research into the mechanisms of motor neurone
degeneration and the high-throughput screening of potential therapeutic
4.2 Emerging stem cell technology offers
scientists a potential source of human motor neurons for research.
To date, at least two research teams in the USA have reported
the successful generation of motor neuron cell lines from embryonic
stem cells (no similar success has been demonstrated with adult
4.3 The creation of motor neurone cell lines
from healthy people will represent a significant advance in understanding
the pathogenesis of MND. However, the creation of cell lines that
most accurately represent human forms of MND will require SCNT
techniques to fuse enucleated eggs with somatic cells from patients
with the rare, hereditary forms of the disease. Progress is greatly
hampered by a lack of human eggs.
4.4 We believe the use of animal eggs and
the creation of cybrid embryos offers a viable alternative
source of motor neurones, which could revolutionise research into
MND and related conditions. As such, we would not wish to see
this avenue of research closed off to scientists.