Amid the right-to-life debate, what of those who could be cured by stem-cell research? Dick Ahlstrom, Science Editor reports
The debate over funding for embryo research has proved just as contentious as any of the past abortion referendums. It has also dished up enough rhetoric and exaggeration to leave the public once again struggling to understand the issues.
The familiar right-to-life row started up this time because of last Wednesday's Council of Ministers meeting in Brussels. Ministers were asked to vote on Commission proposals to give EU cash for research on embryonic stem cells, research that results in the destruction of the embryo.
Well-targeted lobbying caused disarray in the Government parties as backbenchers realised the possible electoral consequences and reared up against the Cabinet's decision to back the original Commission plan. Youth Defence and other protesters were also out in force, further alarming politicians.
At the end of the day the Ministers kicked to touch, postponing a decision for a week until compromise proposals could be considered. These appear to tighten controls on the research but are unlikely to satisfy those so vehemently opposed to it. So the battle continues.
The core of the argument relates to the harvesting of embryonic stem cells, cells with the potential to grow into any of the various tissues in the body. Taking the cells kills off the embryo, but researchers believe the stem cells could then be used to cure intractable diseases.
The central ethical question is whether it is right to destroy a potential, but as yet unrealised, human being, in order to bring relief to those suffering with diseases. Many accept the trade-off but others can't suffer the loss of the embryo.
Patients struggling with illness or disability also face this issue. They must confront the reality of disease, unlike the rest of us who have the comfort of considering disease only in theoretical terms.
Here, we give a chance for the patient support groups to be heard. Their voices are perhaps the single most important to be heard in this debate.
Parkinson's disease
The Parkinson's Association of Ireland, the body that represents those afflicted by Parkinson's disease is strongly in favour of funding for embryonic stem-cell research. However, it argues for strict controls and urges caution given the long delay before any treatments could arise.
"Anyone I have spoken to has been very much in support of the research," states Conall MacRiocaird, the association's development manager. "We would caution people because it could take some time to introduce treatments, 10 to 15 years."
Early work with mice and initial human trials allow people to hope that stem cells might help these patients, MacRiocaird says. "The first experiments seem promising as they do for lots of conditions."
The association is in favour of the EU funding proposals, not just because it will advance the research but also because it will introduce controls on the work. "The research is going to take place in a very regulated environment," he says.
"Parkinson's is a progressive neurological condition that affects about 7,000 people in the Republic of Ireland. The cause is unknown and there is no cure."
The disease causes the progressive loss of brain cells that produce dopamine, a signalling chemical that is essential for the proper control of movement. Well-known people who have the disease include the Pope, former boxer Muhammad Ali and the actor Michael J. Fox.
Loss of dopamine slows muscle movement and can also cause uncontrollable tremors. The mind remains clear but quality of life declines as control over muscles gradually and irreversibly slips away. The main treatment approach is the drug Levodopa that replaces lost dopamine. Its beneficial effects tend to diminish over time, MacRiocaird says, and typically are gone altogether after about seven years.
Contact the association on freephone 1800-359359
Alzheimer's disease
The Alzheimer Society of Ireland is currently opposed to research on human embryos in pursuit of a cure for this devastating illness. The Society's concerns relate to a perceived diminution of the value of the person, explains Prof Desmond O'Neill, medical director of the Alzheimer Society of Ireland.
One in 12 people here will succumb to Alzheimer's or some other form of dementia in later life. The Society strongly backed the concept of the "preserved personhood" of those with dementia, that dignity be retained despite the illness, he says.
"It is this very solidarity with life at its most vulnerable that arouses concern at the prospect of research based on embryos," he states. "A research which depends on arbitrary decisions of what constitutes life sets alarm bells ringing to those sensitised to dismissive attitudes to personhood in dementia."
Alzheimer's disease is a progressive and incurable brain disorder that slowly and insidiously takes away a person's ability to remember. It is the single most common form of dementia, affecting between 30,000 and 40,000 people here. Symptoms worsen over time and can be accompanied by personality and behavioural changes. "You lose your ability to express yourself," he says.
For unknown reasons, Alzheimer's patients lose a particular cell-type in a part of the brain linked to memory. The hope is that stem cells might bring the regeneration of these missing cells and reverse the symptoms.
However, there is no evidence yet that this can ever be done, Prof O'Neill says. The great scourge of dementia was the "loss of personhood". If the embryo lost its personhood then there were disturbing echoes "at the other end" of life.
"We would be opposed to allowing embryonic stem-cell research to progress while adult stem-cell research is also possible."
Contact the society at 01-2846616 or visit www.alzheimer.ie
Diabetes
The Diabetes Federation of Ireland holds no formal view on whether the Government should support EU funding for research on embryos, according to its manager, Kieran O'Leary.
However, a former chairman of the federation, Prof Gerald Tomkin, believes that stem-cell research holds huge promise for patients with this disease. "There is tremendous potential. It seems a wonderful way to use tissue," he says. "I can't imagine any parent of a child with diabetes who wouldn't want stem-cell research."
The incidence of diabetes is racing ahead, says Prof Tomkin, a consultant physician and professor at Trinity College Dublin. "Of the adult population, 10 per cent will have diabetes or be glucose intolerant. Up to 50 per cent of patients coming to coronary care units are diabetic or pre-diabetic."
The disease occurs when the body can't regulate sugar levels in the blood, a job done by the hormone insulin. Beta cells in the pancreas produce insulin, but these cells die off in Type I diabetes, which affects children and requires daily insulin injections. Either too little insulin is produced or the body can't utilise it properly in Type II or adult diabetes. Careful diet and drugs control the adult disease, Prof Tomkin explains.
While sugar levels can be controlled from o day, long-term diabetics have significant problems with loss of adequate circulation in the limbs. It also affects the retina and vision. Beta-cell transplants have shown promise but it takes up to five donor organs for a single recipient and beta cells cannot be cultured for transplant. Attempts to use adult stem cells have not shown much potential, but embryonic stem cells in animal tests have given very good results.
"There have been animal studies that show [embryonic stem cells\] can be grown up and implanted to cure diabetes. It would look like a hugely promising way forward."
Contact the federation at 1850-909909, e-mail: info@diabetes.ie or visit www.diabetes.ie
Spinal injuries
The Spinal Injury Association does not take an official view on whether embryonic stem-cell research should be funded by the EU, says the Association's support coordinator, Joan Carthy. However, its members are largely infavour of this research and the promise it holds.
Carthy has used a wheelchair for 13 years and works with the Association at its base in the National Rehabilitation Hospital in Dublin. "Speaking for people with spinal injuries, the majority of them would say yes, lets go ahead with this research," she says.
However, Carthy acknowledges that it is ethically fraught and would "need to be looked into very carefully before being brought forward". She is also sceptical about whether stem-cell research can deliver results.
Promising tests on rats have remained no more than promising, she says. "It never seems to get any further than that. None of these cures will be this year or next year. If people are lucky it may be in their lifetime."
The Association provides support and information for those who have suffered spinal-cord injury and for their families. There are two main categories of injury, she says, "complete" and "incomplete".
A complete injury causes total loss of movement and sensation below the point of damage. Incomplete injury usually allows some degree of movement and sensation, but spinal-cord tissue does not repair itself, and any damage is invariably permanent. "The human body doesn't allow the cells in the spinal cord to regenerate."
Researchers believe that stem cells might enable the spinal cord to overcome this resistance to regrowth and to reconnect itself. There have been promising results in rats with damaged spinal cords, but the research has a long way to go.
Hollywood actor Christopher Reeve, left paralysed after a riding accident that severed his spinal cord, established a research foundation and is now a key funder of advanced research, including the use of embryonic stem cells.
Contact the association at 01-2355317, e-mail: info@siairl.org or visit www.siairl.org