Response to Medical Research Council consultation on supply of human embryonic stem cells

1. Should the supply of new stem cell lines continue to be considered as a national strategic issue, requiring a coordinated approach from MRC (and other funders)?

Yes.

Dementia is a devastating illness, which affects 58-65,000 people in Scotland at present, and 750,000 in the UK as a whole. As the population ages, the number of people with dementia is forecast to double by 2038. It is vital that every effort is made to find ways of preventing, postponing, treating or curing dementia, for the benefit both of those diagnosed and of society, which will otherwise be faced with the problem of providing care.

Stem cell research is an important avenue to pursue in the search for a better understanding of Alzheimer's disease and other forms of dementia, and how they can be treated. Therapeutic cloning has the potential to provide a supply of embryonic stem cells with the genetic makeup of diseases such as hereditary forms of dementia, so as to study the genetics and biochemistry of the disease, and to produce large numbers of cells which are hard to obtain in other ways, in order to test drug treatments.

A restricted number of stem cell lines is unlikely to be adequate to provide the range of genotypes required to carry out such research. In addition, we understand that recent research has shown that some existing stem cell lines have become contaminated and thus it may not be possible to use them for potential future treatments.

Alzheimer Scotland carried out a large-scale survey of our members and staff in 2005 to gauge attitudes towards stem cell research, including that involving human embryos, and the results indicted strong support for stem cell research as a means for improving understanding of the causes of dementia and for research into treatments. The majority (76%) of respondents felt that the use of human embryos in dementia research was acceptable, with 83% agreeing with the use of donated embryos donated by couples having fertility treatment. There was less support (43%) for the use of therapeutic cloning to create a human embryo, with 22% responding ‘don’t know’.

2. How many more human embryonic stem cell (hESC) lines are likely to be needed in the foreseeable future, covering what genotypes, and to what specifications? For what purposes?

3. What research questions cannot be addressed with existing hESC lines?

4. What specific issues cannot be met by existing hESC lines for the following: i) Drug Discovery ii) Toxicology iii) Disease models

From the perspective of patients and carers rather than that of medical researchers, Alzheimer Scotland believes that it is important that there are suitable hESC lines, or the potential to develop suitable hESC lines, for all forms of dementia, including hereditary and late onset forms of Alzheimer's disease, vascular dementias, Lewy body dementia, Pick’s disease and other fronto-temporal dementias and other rarer causes of dementia.

5. Are you aware of any clinical trials (worldwide) in which hESCs or their progeny are currently being used or in which their use is planned in the next two years? (please supply information).

6. What are the hurdles that must be overcome for the development of GMP hESC lines for potential clinical use (eg. enabling research or regulation)?

7. What would make it easier for you to communicate to the public about the rationale for creating further hESC lines and researcher responsibility?

Alzheimer Scotland would be happy to be a partner in communicating to our members and to the public the importance of creating further hESC lines for dementia research.

8. If you have any further comments please feel free to add them here:

Alzheimer Scotland is the leading specialist dementia charity in Scotland, representing the interests of Scotland’s estimated 58-65,000 people with dementia, and their carers. We aim to be the voice of and for people with dementia and their carers, to influence the improvement of public policies and to promote and provide high quality services for people with dementia and their carers. We work to improve the lives of everyone affected by dementia.

Alzheimer Scotland supports scientific endeavours to increase understanding of the causes of dementia and seek effective treatments for it. Stem cell research is a welcome new avenue for scientists to explore in addition to existing areas of study, and we believe that research in the area must be allowed to progress, with careful regulation, to ensure that the best possible effort is made to find ways to prevent, alleviate or treat the illness in the future.

We have responded only to those parts of this survey appropriate to our expertise.

We would be happy to provide any further information that the MRC would like.