Position Paper / European Policy

 

CF Statement to European Parliament, Temp Cttee on Human Genetics
Research involving human embryonic stem cells

Comment on the EP Parliament resolution on “Human Cloning”
dated September 7, 2000. Doc.: B5-0710, 0751, 0753 and 0764/2000


HIGH LIGHTS

Research in stem cells could revolutionise and improve the way new drugs and tests are developed particularly as regards safety and efficacy – and will greatly affect all areas of medical treatment for the benefit of European patients.

One of the great potentials in embryonic stem cells is the possibility to develop cells and tissues, which can be used in organ transplantation. Today, donated organs are often used but the number of patients in need of organ  transplantation far exceeds available donated organs.  Thus, a succesful research in and development of stem cell based treatment will benefit millions of patients. 

Stem cells stimulated to develop into specialised cells offer an inexhaustible source of replacement cells and –tissues.  Alone or in combination with gene therapy the potential is to develop improved treatments of hitherto incurable disorders such as: Parkinson, Alzheimer, diabetes, liver disorders, cancer, osteoporosis, visual impairment disorders, muscular dystrophy, cystic fibrosis etc. Without research and development this potential will never be realized.


Where should the stem cells come from?

Early stem cell trials on patients with Parkinson were performed using cells from pig foetuses, and the so-called Alberta Protocol includes the administration to diabetic patients of a solution of islet cells derived from pancreas from corpses. These sources are in no way optimal neither technologically nor ethically.

We, as patients, believe that this research should take place using the best possible cells with the highest possible level of stability and safety: human embryonic stem cells. 

Embryonic stem cells are at the origin of more than 200 cell types in our fully developed body. They can be divided and multiplied endlessly in laboratories and they can be modified into any cell type needed by patients. Embryonic stem cells can be harvested from fertilized eggs unused after in vitro fertilization (IVF). They can also be
developed via nuclear transfer on unfertilized egg cells  – a procedure which in no way involves neither foetuses nor embryos. Also gene therapy can correct inborn inherited defects in the DNA of the transplanted nucleus.

In the long view it may be possible to harvest stem cells from adults. Up to now, however, it has only been possible to make them grow into a small number of cell types, and it has also been found that cells derived from adult stem cells are not stable because they spontaneously revert to the original cell type. For that reason The Royal Academy (UK) is of the opinion that research here and now should be based on embryonic stem cells in order to avoid that medical progress is delayed unnecessarily. 

As patients with severe disorders we see the present regulation of stem cell research as extremely important for the cure of the generation of the future suffering from our disorders.

Therefore, we urge the European politicians to create the optimal framework for stem cell research both in terms of legislation and funding oportunities. We call for a common European regulation, on line with the recommendations described by the English group of experts chaired by Professor Liam Donaldson, Chief Medical Officer, in their report “Stem Cell Research: Medical Progress with Responsibility”, Department of Health, June 2000, and adopted by the Britsh Parliament in December 2000.


9 January 2001
Danish Cystic Fibrosis Association