'Get involved in genetic research'

Dubai: Arab states must be part of the solution to the problem of genetic disorders as it contains the highest number of disorders in the world, said the head of a genetics database centre in the Middle East.

Dr Najeeb Al Khaja, President of Centre for Arab Genomic Studies (CAGS) and Secretary-General of the Shaikh Hamdan Award for Medical Sciences, told Gulf News that with 850 genetic disorders reported so far, the Arab world had a responsibility to get involved.

"We have the highest incidence of genetic disorders in the world with almost 1,000, because of consanguinity, having lots of children past healthy childbearing age, lack of awareness and not enough genetic counselling. We should be involved in the research because the results affect us," he said.

Getting involved in the research and progress would also make sure that the findings would be applicable to the Arab population.

Dr Al Khaja said many of the diseases occurring in the region were not found elsewhere in the world.

"What is the dominant type of genetic disease in Europe or India may not be the dominant type in the region. We know the clinical features of the genetic disorders here, but we don't know the molecular features of most of them," he added.

UAE's road to genetics

The realisation for genetic research's importance did not come easily to the UAE. Thalassaemia is and has been the most common genetic disorder in the country for years.

The disorder is characterised by the breakdown of oxygen-rich red blood cells, requiring people with the condition to undergo monthly blood transfusions to live.

The frequency of the disorder has given birth to legislation requiring pre-marital genetic screening for the thalassaemia gene, the setting up of a specialised thalassaemia centre and the establishment of CAGS, which supports genetic research and compiles data on genetic disorders within the region.

Then geneticists with the centre made a major discovery in 2005 - a new genetic disorder in a family living in the UAE and Oman. Since then, the chromosome and the faulty gene have been identified.

Dr Al Khaja said the study drove home the importance of genetics, and made them realise their shortcomings.

Unique research

"That research was unique because it was our first major study. At that time, we didn't have the information and the know-how to do the study," he said.

CAGS enlisted US researchers and laboratories to ensure their findings would be accurate, credible and accepted by the scientific community.

The research team, led by UAE's Dr Mohammad Naveed, published two papers in the journal Genetics last year and in January this year.

Dr Al Khaja said CAGS has grown by leaps and bounds due to the collaboration. He added researchers were close to developing a way to screen for the faulty gene.

"We should be able to reach a stage where we will be able to help the family and screen for the faulty gene. That is the ultimate goal, when we are able to help people," he said.

Despite their success, he said CAGS would not be a centre for clinical genetic research.

His reasoning was simple - CAGS is supposed to fill a gap that is not addressed by any other genetics centre in the Middle East.

"It is an information centre, rather than clinical. The sad story of the Arab world is that we often do not have a database on anything," he said.

"I am more in favour of using resources to expand the information services because no one is doing what we are doing. There are many genetic research labs in the region, like at Al Wasl Hospital. Why should we duplicate their efforts? I'd rather help clinical laboratories upgrade," he added.

He said CAGS was working to establish links between the clinical genetic centres and the experts in the region and internationally.

The centre has received recognition from the Human Genome Organisation (Hugo), which is behind the Human Genome Project, its successor, the Human Variance Project, and the United Nations.

Common diseases

Other than single gene defects, such as thalassaemia, involvement in genetics help solve the nation's illnesses.

The UAE ranks high globally in diabetes, affecting one out of five people.

"Genetics has its fingerprint in everything. We can link many diseases to genetic basis, but unfortunately for some, like diabetes, they are not caused by just one gene," Dr Al Khaja said.

"With every identification of the faulty gene, whether it is the pancreas making it not produce insulin, or the body produces antibodies making it resistant to insulin, we will be able to tailor-fit the treatment for each case," he said.

This and other work in genetics would help make life better for people and ensure the health and safety of future generations, he added.

Getting involved with genetics did not mean interfering with God's work, however.

Dr Al Khaja said geneticists should not fear any accusations of playing God.

"It is not playing God, because whatever science gives you, it is given by God. God says use the science and knowledge with wisdom. You are making use of what God gave you to help others," he said.