Genetic Alliance UK - Views & Policy:
Genetic Alliance UK works for patients and families affected by a wide range of conditions with a genetic component.
These range from multifactorial conditions such as heart disease in which genes play a role, to conditions caused by damaged, extra or missing chromosomes, and to conditions caused by a single mutation in a single gene. (Review the following link for more information about chromosomes, genes and mutations).
Patients affected by diseases such as these with a genetic component have many differing needs. Many lack a treatment or a cure; many existing treatments are painful, tiring, burdensome or only partially effective, or may require frequent hospital visits; some have no means of diagnosis; or their root cause may be poorly understood. All of these needs are only likely to be delivered by good quality, broad ranging biomedical research.
Genetic Alliance UK believes that good quality, ethically sound research which has the potential to deliver greater understanding of the route of action and/or possible cures or treatments of disease should be allowed to flourish. This position informs many of our views and positions on issues that impact upon research.
Research Views & Policies:
Click the links below to reveal/hide more about our views and policies on Research in different areas:
What are Stem Cells?
Stem cells are special cells which are the source of all the cells in our bodies. There are many types which differ in their “potency”. A pluripotent stem cell can produce all the different types of cell in the human body, e.g. muscle cells, nervous tissue, blood etc.
Stem cells are considered to provide a possible source for cures for currently unmet health needs, and are therefore an important research topic.
Adult Stem Cells
We all have stem cells in our bodies throughout our lives, for example in our bone marrow we have haematopoietic stem cells which produce new blood cells, and our skin renews itself with keratinocytes from epidermal stems. The stem cells we have in our body are only capable of producing a small group of cells, so they can only be used to treat health problems relating to this group.
Haematopoietic stem cells have been used to treat blood and immune disorders since 1968 when the first bone marrow transplant occurred.
A promising avenue of research looks at how adult stem cells can be reprogrammed to increase their potency, and solve a wider range of health problems. These are called induced pluripotent stem cells.
Cord Blood Stem Cells
Umbilical cord blood also contains blood stem cells, which can turn into the cells found in blood and the immune system. Just like bone marrow transplants, these stem cells can be used in transplants to treat diseases that affect the blood.
Cord blood can be collected at birth and stored in a bank. Genetic Alliance UK have produced a leaflet explaining more.
Cord blood transplants are often made from siblings of patients conceived by preimplantation tissue typing (savior siblings), click here [link to PTT section of diagnosis] to read more about preimplantation tissue typing.
Embryonic Stem Cells
Embryonic stem cells are regarded by some to have the most potential to deliver cures and treatments, as they are naturally fully pluripotent. This potential comes with a great deal of controversy.
Genetic Alliance UK believes that research involving embryonic stem cells should be allowed to continue in a well regulated environment (currently provided by the HFEA), to ensure all possibilities to deliver cures and treatments for unmet medical needs are properly explored.
Embryonic stem cells are collected from terminated pregnancies and from spare IVF embryos donated for research. Some research is done on cytoplasmic hybrid embryos which are created from animal eggs and human cell nuclei. Find out more about our views on: cytoplasmic hybrid embryos.
Research involving animals is necessary for continuing progress in the development of cures and treatments for unmet medical needs. Genetic Alliance UK supports this work while animal research is well regulated and governed by ethical review.
Many diseases have complex mechanisms that cannot be modelled using one cell or one tissue. Only research using animals can help us to understand, and perhaps treat, these conditions. Until a replacement to animal research is found (a goal which we strongly support) we would like to see research involving animals continue to be permitted.
As you can see in the Policy Archive 2009, Genetic Alliance UK has campaigned hard to keep animal research in the EU where it can be governed properly, during the passage of the review of the EU Animal Directive 86/609/EEC.