John Darkin: Disabled deserve our best research

Opinion

The doctor was blunt. "Your son is going blind. He has a genetic disorder that will deteriorate through his life.

"I strongly advise that you find him a special school that teaches Braille without delay. There is no cure."

My son was 10. The news of his impending blindness was shocking and devastated him and the family.

Not long after, we were told our other son had inherited the same faulty recessive genes and he would suffer a similar fate.

We were not familiar with the boys' form of blindness and had no idea from precisely whom this double-whammy was inherited because there is no known history of the disease in either family.

It seems that without knowledge of some ancestral malfunction, or unless would-be parents have the foresight to undergo a raft of tests, those planning a family enter a lottery in which the winning prize is a healthy child.

The eye disease from which my sons suffer is retinitis pigmentosa (RP). It is the biggest cause of blindness in the developed world, and has puzzled medical scientists trying to find a cure.

It is sometimes known as night blindness because in low-light vision is minimal, but mostly the disease is referred to as tunnel vision. The idiom requires no explanation, but the reality of its provenance is rarely considered.

Tunnel vision is so-called because only limited shafts of light transmit through victims' retinas in an otherwise grey and black confusion. These shafts narrow in time until the grey and black confusion is total, and their window on the world closes.

Progress in finding a medical solution to halt or cure RP has been slow, but the completion of the human gene map has stimulated further research. Funding for this work, always a problem for medical science, is mostly raised privately, governments being reluctant to invest taxpayer money.

Now, however, we are in the exciting age of stem-cell technology and already successful results have been reported. But some of the methods used to acquire the cells are throwing up hard ethical questions.

Governments may not have provided much cash for medical science but they can now set an ethical lead and allow vital stem-cell research.

It has been reported in New Scientist magazine that in the United States, Elisabeth Bryant, an advanced RP sufferer, has had her sight restored by a transplant of retinal cells taken from an aborted foetus, and that a further six patients with RP have had similar treatment.

Researchers at the University of Toronto have successfully regenerated human retinal stem cells into the eyes of mice. These cells were taken from human cadavers, and if this early work leads to successful treatment of humans, harvesting stem cells this way may negate some ethical concerns.

This relatively new study of genetic material and its benefits is giving cautious optimism to millions of victims of a variety of medical conditions, including Alzheimer's, some cancers, diabetes and, as the late Christopher Reeve reminded us, spinal-cord damage.

Enthusiastic calls for stem-cell research can be heard loud and clear. At the Democratic Party convention in the US, the son of the late President Ronald Reagan made an impassioned appeal to the Government to allow further research in this field. His father had been a victim of Alzheimer's.

To the sufferer, progress is slow. Governments hesitate to fully endorse embryonic stem-cell research in the fear it will lead to deliberate pregnancies aimed at providing foetuses for use within the family, or for sale on the open market. This practice would be abhorrent to most people, even to the pro-abortion lobby, and would be a subject for legislators.

Stem-cell science undoubtedly has huge potential and although human foetuses are a prime cell source for many diseases, in some circumstances it may eventually be possible to take cells from human cadavers.

More fanciful, perhaps, is the theory from the University of Toronto that cells to treat certain bone and muscle diseases could be gleaned from the fat extracted from liposuction procedures. They calculate that in the US alone 150,000 gallons of unwanted fat are tipped down the drain each year.

The skills that millions of people may have contributed to society are lost because of disability, and the cost to taxpayers for disability welfare payments and treatment is incalculable. Further, the emotional burden on families cannot be underestimated.

There are countless examples of parents who courageously bear the relentless task of caring for their seriously disabled children and adult family members. Their circumstances are, in the view of many, justification enough to warrant unhindered stem-cell research.

As individuals we strive for a quality of life, and we must be obliged to ensure that this quality, made available to us by science, is guaranteed to the sick and disabled. This is best achieved not by hiding them away and asking their carer if they take sugar, but by giving scientists the freedom and the finance to research treatments for their problems.

Like it or not - and there are plenty of people who don't - the fact remains that foetuses will continue to be available. Why waste these opportunities?

Abortion is an unhappy reality, but it would be a cold heart that prevented a foetus being used to improve the life quality of a disadvantaged person, especially that of a child. As Hilary Clinton once poignantly reminded us, "There is no such thing as somebody else's child".

Elisabeth Bryant, 63, is grateful to be able to see again. In time, if society makes a generous choice, so will millions of other people, including my sons - and their brilliant guide dogs could be retired.

* John Darkin is a Gisborne writer.