1.  BACKGROUND

  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.  EXECUTIVE SUMMARY

  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 devastating disease.

  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.  INTRODUCTION

  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 human embryos.

  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 CYBRID EMBRYOS NEEDED FOR MND RESEARCH?

  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 compounds.

  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 stem cells).

  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.

January 2007