Research the only hope say parents

ANNE BESTON reports on hopes that gene technology may one day produce cures for every metabolic disease

Parents of children suffering from rare genetic disorders want nothing to stand in the way of gene research.

The emotional plea was made during the final hearings before the Royal Commission on Genetic Modification in Wellington.

A couple with two children suffering from the rare Mucolipdoses type 3 (ML3) disease said gene research offered the only hope of a cure.

It is one of 40 lysosomal storage diseases (LSD), which are caused by genetic defects. About 180 New Zealanders suffer from LSD.

The couple testified that the two teenagers were confined to wheelchairs.

Their 19-year-old son had a learning disability, speech impediment, short-term memory loss and was completely reliant on help for his most basic needs.

The 14-year-old daughter had chronic pain and gross hip deformity and also had a learning disability and memory loss.

The couple said their middle child was unaffected by disease but had suffered because of the stress in the family.

"Life is hard for us all and the stress that goes with it often takes over," they said.

"We are greatly concerned that the Government would look at restricting GE technology."

In its submission, the LSD support group said religious and personal beliefs by sections of society could not be imposed on New Zealanders as a whole and could not be allowed to stop medical research that might help their children.

The group cited the examples of Jehovah's Witnesses not determining policy on blood transfusions even though they were spiritually opposed to the practice.

Fundamentalist Christians did not dictate public policy on abortion, it said.

Auckland woman Bronwyn Gray, whose daughter suffers from lymphangioleimyomatsosis, a progressive and extremely rare lung disease, said it was "intolerable and unthinkable" that public fear should be allowed to stop medical research into the condition.

In her submission for the New Zealand Organisation for Rare Diseases, Ms Gray said research under way in the United States into the gene now known to cause the disease offered the only hope of a cure to the mainly young women affected by it.

Dr Michael Eccles, a senior research scientist at the University of Otago, said on behalf of the organisation that New Zealanders wanted the benefits of research involving genetic engineering.

He said the Hazardous Substances and New Organisms Act, which governed the importation and research into genetically altered organisms, was too restrictive and should be changed.

Dr Eccles said the act should differentiate between high-risk and low-risk research. Low-risk experiments should be delegated to institutions such as universities through biological safety committees.

The National Testing Centre, which screens newborns for metabolic diseases, said babies were not tested for many such diseases because there was no cure.

But with gene research, new treatments for those disorders might become available.

The Government has charged the four-member commission with investigating, by June, where New Zealand should stand on gene technology.

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