EXECUTIVE SUMMARY

  AMRC welcomes the House of Commons Science and Technology Committee's inquiry into the Regulation of Hybrid and Chimera Embryos and is pleased to have the opportunity to submit evidence.AMRC is a membership organisation of the leading medical and health research charities in the UK. Working with our 112 member charities—many of them also patient organisations—and partners, we aim to support the sector's effectiveness and advance medical research by developing best practice, providing information and guidance, improving public dialogue about research and science, and influencing government. Following the recent announcement by the Human Fertilisation and Embryology Authority (HFEA) that they will delay a decision about whether to grant two licences to researchers seeking to conduct work involving hybrid embryos in order to provide more time for public consultation, AMRC is conducting a survey of all our members to inform the deliberations of HFEA, the Science and Technology Select Committee and others on this issue.However, a number of our member charities including Parkinson's Disease Society, Multiple Sclerosis Society, Motor Neurone Disease Association and the Alzheimer's Society have already gone on public record to express their disquiet at the impact on research in their respective fields, of a possible ban on work involving hybrid embryos. Comments from other charities in support of this viewpoint are included as an Appendix to this memorandum.We share their concerns. And without wishing to pre-empt the outcome of our all-member survey, we believe that any ban would hamper a potentially vital avenue for research which could greatly increase our understanding of serious medical conditions which may ultimately lead to new treatments and cures.

BACKGROUND

  On 11 January, the Human Fertilisation and Embryology Authority (HFEA) deferred a decision about whether to allow scientists to use animal eggs as "shells" for the creation of "hybrid" human embryos. These hybrids would contain virtually no animal DNA, but involve using an animal egg to host the nucleus and hence DNA (genetic material) from a human cell. This could come, for example, from the skin of a patient with Parkinson's disease, and a very early stage embryo thus be created as a source of further cells for research. Two groups have so far sought licences for such work: one, led by Stephen Minger at King's College London is researching diseases with a genetic basis, such as Alzheimer's, spinal muscular atrophy and Parkinson's. Lyle Armstrong and colleagues at Newcastle University want to use the technique to study how stem cells develop into the different specialised tissues of the body with a view to growing such tissue for transplant operations. In addition, Chris Shaw of King's College London and Professor Ian Wilmut of Edinburgh University are considering applying for a licence to use embryonic stem cells to help patients suffering from motor neurone disease.

RATIONALE

  There is a shortage of human eggs for research purposes, which is why scientists want to use animal eggs as shells to create embryos. These would have human genetic material inserted into them, usually taken from people with the condition under study, be allowed to develop for no more than 14 days and be a source of stem cells. These cells would then be directed to develop into any one of a number of specialised types, such as heart muscle, neurones or hormone-producing tissue, allowing the disease processes that occur within them to be studied. There is no intention of allowing these embryos to develop beyond the 14-day stage, nor, at least currently, to use the resulting stem cells directly for treatment. The HFEA currently licences the creation of human embryos as sources of stem cells. Given the scarcity of human eggs for this purpose, the use of animal eggs could be viewed primarily as a practical step enabling stem cell research that is already accepted to proceed with greater ease.

PUBLIC CONSULTATION

  The main arguments put forward against this work by pressure groups and religious organisations include: that mixing animal and human cells is immoral and demeaning (to both species), that stem cells from adult humans would be as useful in research as creating new embryos and that such research is a step on a slippery slope to the day when a hybrid embryo will be implanted and allowed to develop into an organism. We also acknowledge the 2000 expert-group report's conclusions on stem-cell research led by Liam Donaldson, the Chief Medical Officer—which concluded: "The use of eggs from a non-human species to carry a human cell nucleus was not a realistic or desirable solution to the possible lack of human eggs for research or subsequent treatment"—as setting a precedent that the Government rehearsed in its 2006 White Paper. However, we believe that although the public consultation revealed some antipathy, it was principally concerned with a different issue—the regulation of fertility treatment, and that the agency could have been more proactive in garnering a range of views on this specific issue both ahead of the formal consultation period and during it. Indeed, it is our experience—and those of our member charities who often have active public and patient involvement programmes—that those who know the reality of illness and disease, are more willing to support groundbreaking and controversial work for patient benefit. So, although we welcome the further opportunity for consultation we do believe some of the controversy that has since occurred could have been avoided if the consultation been conducted more thoroughly in the first instance.

THE NEED FOR PUBLIC ENGAGEMENT

  AMRC both encourages public debate about medical research and respects and acknowledges sensitive feelings surrounding this issue, but it is important to balance these against the medical benefits that might be lost if such work were outlawed. Just as with the use of animals in medical research, which has overwhelming public support, we need to ensure that well-regulated, carefully planned and high-quality work for patient benefit is encouraged, in a climate of public understanding and against a background of ongoing public engagement. Researchers who are tasked with unraveling and treating devastating disease appear to see this work as potentially beneficial. It is AMRC's view that we must not prevent this work from happening but must now work with them to help increase public knowledge of the reality of this, and what might be lost if it is not allowed to progress. We have seen patient and public support consistently generated in such ways in relation to the use of animals in medical research.

January 2007

  Scientists researching muscular dystrophies and allied neuromuscular disorders have for a long time thought that human stem cells offered the realistic possibility of developing new treatments for what are a devastating set of diseases. Stem cells also offer the realistic possibility of creating an environment for researching drug treatments reducing the need for human and animal testing. Both these avenues of investigation are constrained by a shortage of human stem cells, a shortage which would be addressed by proposed advances in chimera embryo research the underlying technology of which, cell nuclear replacement, is well known to both the HFEA and the Muscular Dystrophy Campaign. The HFEA granted a research licence to a team using cell nuclear replacement funded by the Muscular Dystrophy Campaign investigating mitochondrial myopathy. Research such as this is well regulated in the UK. The charity's members are very clear in their unequivocal support for advancing research into technologies that might offer current and future generations the hope of treatment for muscular dystrophy and would resist all attempts to curtail such advances. One such advance is research into chimera embryos which should be encouraged now and into the future.

Philip Butcher

Chief Executive Officer

Muscular Dystrophy Campaign

  Stem cells offer a new and exciting avenue of medical research that may revolutionise research into Motor Neurone Disease. The creation of cell lines that most accurately represent human forms of MND will require cell nuclear replacement techniques, to fuse enucleated eggs with somatic cells from patients with the hereditary forms of the disease. Progress, however, is greatly hampered by a lack of human eggs.

  The use of animal eggs offers a viable alternative approach to the creation of motor neurone cell lines, with the potential to help identify the causes of MND, aid understanding of mechanisms of motor neuron death and fast-track the identification of potential therapeutic drugs. We do not wish to see this avenue of research closed off to scientists and with it, the prospects of rapid advances in the search for a cure for this devastating disease

Kirstine Knox

Chief Executive

Motor Neurone Disease Association