Geneticists detect 16 more diseases in Emirates
14.3.2010
There are 260 known genetic diseases in the UAE. That total was attained after researchers at the Centre for Arab Genomic Studies, based in Dubai, last year identified another 16 disorders in the Arab population of the Emirates.The majority of the diseases are single-cell disorders caused by a mutation in a single gene. Sickle-cell disease and cystic fibrosis, for example, are both single-cell diseases. Disorders related to congenital malformations or metabolic disorders were also identified. Among the 16 disorders identified last year was Gaucher’s disease, which can cause an enlarged spleen, liver malfunction and skeletal problems.
Dr Mahmoud Taleb al Ali, the director of the genomics centre, said although the number of identifiable diseases is going up, that does not mean the number of sufferers is on the increase. “There is never a decrease in the types of diseases,” he said. “You may see a decrease in terms of the numbers of people affected, but the number of types will always increase all over the world.” Dr al Ali was speaking on the sidelines of the third Pan Arab Human Genetics Conference, which took place in Dubai on Saturday and Sunday. He said better knowledge and technologies, as well as better screening, had helped identify many of the diseases on the database.
Genetic testing is also common in the Emirates and every UAE national must be screened before marrying. This testing can show whether an individual has an inherited disposition to a certain disease, such as diabetes, or tell a couple whether they are likely to have a child affected by a genetic disease.
“We have done more literature research as well as physical research, so these diseases may have existed in the past but have never been recorded,” Dr al Ali said.
“It is normal in this part of the world to have a high number, but this high number is not normal. We have many people coming from all over the world, it is not just the local population.”
Dr Yousef Abdulrazzaq, a paediatrician and neurologist at the Faculty of Medicine and Health Sciences at UAE University in Al Ain, also emphasised that the main way to prevent the diseases was regular screening, particularly before marriage.
“This is the only way to prevent it; we have been doing premarital screening and we have to continue with that,” Dr Abdulrazzaq said. “Some of the diseases are very rare, which is why screening is crucial.”
Contact with certain toxic chemicals or materials, such as lead or nuclear energy particles, can also cause mutations, he said.
The most common social factor contributing to the prevalence of genetic diseases is consanguineous marriages. The prevalence of Down syndrome, a chromosomal disorder, in the Emirates is almost double the global average, at 21.4 babies per 100,000 population. And about four to eight per cent of the UAE population is said to carry the thalassaemia gene, an inherited disorder in which the body produces less haemoglobin than normal. Haemoglobin allows red blood cells to carry oxygen around the body. Low levels can cause anaemia, which leads to tiredness and fatigue.
Dr Ghazi Tadmouri, the assistant director of the genomics center, said one of the centre’s main roles is to create a database that identifies all genetic disorders across the Middle East, “from Iraq to Morocco”.
“Genetic diseases range from blood disorders like sickle cell diseases, thalassaemia, haemophilia and haemoglobin disorders, all of which are rampant, to cancers, or genetic disorders related to the environment and lifestyle,” said Dr Tadmouri.
The UAE’s database, said Dr Tadmouri, relies on comprehensive surveys that are carried out regularly, and incorporates diseases highlighted in medical reviews and journals.
The Centre for Arab Genomic Studies, which is a division of the Sheikh Hamdan Award for Medical Sciences, organised the conference.
By: Hala Khalaf, Mitya Underwood, and May al Hamli [The National]
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Gene database 'essential' to fight diseases
14.3.2010
The Arab world has the highest incidence of genetic diseases and compiling a genetic database is essential for preventing such disorders, a senior scientist said yesterday.
There are many reasons for the genetic disorders in the region, among them marriages between close relatives, noted Dr Mahmoud Taleb Al Ali, chairperson of the scientific committee of a pan-Arab human genetics conference.
Dr Al Ali told Gulf News there was no solid data to aid medical intervention in cases of genetic disease, albeit information is now being gathered across the GCC states.
"The work is almost complete," Dr Al Ali said, referring to the database, which will include the number of people and the types of disorders. The most common genetic disorders seen in the region are thalassaemia, sickle cell disease, G6PD deficiency, chromosomal deficiency and Down's Syndrome.
According to the UAE Genetic Diseases Association, thalassaemia occurs in one in 12 Emiratis, one in 20 Asians, and one in 50 Afro-Caribbeans. In northern parts of India and West Pakistan, its frequency is as high as one in six. Thalassaemia patients with severe anaemia require regular monthly blood transfusion. G6PD (Glucose 6-phosphate dehydrogenase) is a common genetic disorder in almost all Arab countries due to huge incidence of an abnormal gene in conjunction with high consumption of fava beans in the region.
Some of the world's highest frequencies of sickle cell disease are seen in Saudi Arabia (5.2 per cent), Oman (3.8 per cent) and UAE (1.9 per cent). In individuals with the genetic condition, ill health can be precipitated by certain medical and environmental factors including infection, bleeding, exposure to cold weather, leg ulcers and blockage of blood vessels.
Dr Al Ali said lack of awareness is another reason for the spread of the diseases. Campaigns conducted earlier had not been very scientific in their approach, he observed.
After the GCC database project is completed, the Dubai-based Centre for Arab Genomic Studies will extend research to include the entire Arab World, he said.
"It is a momentous task, but we have undertaken it." The Centre is a division of Shaikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences.
Dr Al Ali told participants that the centre was considering plans to host a human genome meeting in an Arab country next year.
By: Mahmood Saberi [Gulf News]
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Health Minister opens 3rd Pan Arab Human Genetics Conference
14.3.2010
Under the patronage of H.H. Sheikh "Hamdan Bin Rashid Al-Maktoum" Deputy Ruler of Dubai, UAE Minister of Finance and President of Dubai Health Authority, H.E. Dr. "Hanif Hassan", UAE Minister of Health, Chairman-Board of Directors at Sheikh Hamdan Bin Rashid Award for Medical Sciences, inaugurated in today the "3rd Pan Arab Human Genetics Conference", that is organized by the "Center for Arab Genomic Studies", a division of "Sheikh Hamdan Bin Rashid Al-Maktoum Award for Medical Sciences", in Dubai.
The two-day conference will discuss the latest genome research activities in the Arab Region with the participation of specialists and consultants who will present 150 research papers from 36 Arab and foreign countries. The conference is attended by a large number of doctors, decision makers, and doctors under training, academics and students of medical colleges, nurses, and laboratory technicians.
The Minister said the Award had laid down proper scientific and practical plans to advance medical and genetic scieinces not only in the UAE but also across the Arab World. He said Sheikh hamdan, patron of the Award, established the Centre in 2003 to develop reserach on human genetics and boost relations of cooperation between getic researchers in the region and the world.
In the Arab World, genetic diseases represent a major public health problem. Several factors contribute to the wide prevalence of genetic disorders in the region including the high rate of consanguinity, social trend to have more children until menopause, selective factors favoring inherited disease characters like thalassemia and glucose-6-phosphate dehydrogenase deficiency, and the lack of public awareness towards the early recognition and prevention of inherited disease.
The vision of H.H. Sheikh Hamdan Bin Rashid Al Maktoum to alleviate human suffering from genetic diseases in the Arab World crystallized in the establishment of the Centre for Arab Genomic Studies (CAGS) to characterize and prevent genetic disorders and transfigure the future practice of health care in the region.
Some of the priority objectives of the Centre for Arab Genomic Studies are to educate the public and professionals alike on the important impact of genetic diseases in the Arab World and the methods and benefits of early genetic diagnosis. The Centre for Arab Genomic Studies also plans to provide comprehensive genetic services by translating research achievements into well-integrated patient treatment programs. Concurrently, it will also address the ethical, legal, and social issues that may arise with the implementation of such programs.
This year's conference is highly supported by the World Health Organization "WHO" through the participation of the Regional Advisor for Research Policy at the WHO Regional Office for the Middle East in Cairo, Egypt. In addition, this year's research papers are characterized by their high quality materials that reflect the status of scientific development of Arab scientists in this field.
Dr. Mohammad Afzal Research Policy and Cooperation, Regional Office for the Eastern Mediterranean, World Health Organization, Cairo, Egypt, spoke about Governance Challenges of Genomic Applications in Healthcare Systems. He said "Exponentially growing human genomics research and its commercial involvement in the present century has created a significant number of policy challenges, such as patenting, genetic testing and genetic information. The transition of governing via risk to governance by uncertainty is another challenge to contemporary genomics governance. These new topics of genomics governance have not been taken up seriously in the already operating or emerging institutional structures of policy making in the counties of the Eastern Mediterranean. Besides, he added there exists a gap between policy challenges and institutional responses and even with meager genomic research in the Region that might lead to growing social opposition against genomics. The healthcare systems, therefore, must have institutional basis to determine the clinical parameters and real potential of genetic testing application in the diagnosis and treatment of disease, and priority setting mechanism for scientific and social policy research. In the meantime, research ethics committees and advocates should develop ethical frameworks to encourage innovation, while protecting research participants and patients from potential harm.
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Health minister to open Pan Arab Human Genetics Conference tomorrow
12.3.2010
Under the patronage of H.H. Sheikh "Hamdan Bin Rashid Al-Maktoum" Deputy Ruler of Dubai, UAE Minister of Finance and President of Dubai Health Authority, H.E. Dr. "Hanif Hassan", UAE Minister of Health, Chairman-Board of Directors at Sheikh Hamdan Bin Rashid Award for Medical Sciences, will inaugurate in Saturday the "3rd Pan Arab Human Genetics Conference", that is organized by the "Center for Arab Genomic Studies", a division of "Sheikh Hamdan Bin Rashid Al-Maktoum Award for Medical Sciences", at "Al Bustan Rotana Hotel" in Dubai.
The two-day conference will discuss the latest genome research activities in the Arab Region with the participation of specialists and consultants who will present 150 research papers from 36 Arab and foreign countries. The conference is attended by a large number of doctors, decision makers, and doctors under training, academics and students of medical colleges, nurses, and laboratory technicians.
Dr. Najib Al-Khaja, President of the conference and Secretary General of Sheikh Hamdan Award for Medical Sciences said: "The wide vision of His Highness Sheikh Hamdan Bin Rashid Al Maktoum, patron of the award, reviews the importance of supporting research in human genetics and bridging gaps among Arab geneticists in order to coordinate their efforts and reduce the spread of genetic diseases in the Arab world. He added that the Pan Arab Human Genetics Conference is a unique event in the Arab countries as it achieved great success during the 2005/2006 and 2007/2008 rounds. It is also expected to achieve greater success this year.
This year's conference is highly supported by the World Health Organization "WHO" through the participation of the Regional Advisor for Research Policy at the WHO Regional Office for the Middle East in Cairo, Egypt. In addition, this year's research papers are characterized by their high quality materials that reflect the status of scientific development of Arab scientists in this field.
Dr. Al Khaja explained that the conference adopts international standards which enable it to be thoroughly put in the agendas of the most important conferences worldwide in the field of human genetic sciences. The main objective of the conference is to support scientific researches in the Arab region and at the same time reduce the spread of genetic disorders which threaten the security and stability of the Arab family.
Tomorrow's agenda includes an interactive session entitled "open clinic session" where doctor speakers will review 7 rare genetic disorders or disorders with overlapping symptoms and ways used for their diagnosis on clinical or genetic levels. The session will also address many important issues such as Kuwait's experience in developing quick and inexpensive methods of diagnosing genetic disorders, short stature in children and how to distinguish between short stature patients and non stature patients.
Additionally, a research study from Saudi Arabia will be displayed to review the discovery of a gene that causes severe mental retardation and its relationship to facial and skeletal genetic disorders, a rare genetic disorder from Tunisia of being one of the seven rare disorders in the world, as well as a genetic skeletal disorder in a Pakistani consanguineous family.
Dr. Al Khaja added that an important symposium entitled "The role of media in genetic literacy" will be held on the second day of the conference as part of the societal role of the "Center for Arab Genomic Studies" to raise awareness of the seriousness of genetic disorders in individual and social levels.
The symposium hosts Dr. "Ali Singel" the presenter of "vitamin" on Dubai TV, Mr. "Jamal Al-Bah" chairman of "Arab Family Organization", and Dr. "Hanan Hamami" professor of Human Genetics Department of Medical Genetics and Development at Geneva University Hospital, Switzerland. It will be also moderated by Dr. "Tarek Al-Abyad", supervisor and presenter of the medical bulletin show in Al-Jazeera TV and reviewed in Arabic language.
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Sheikh Hamdan Award for Medical Sciences supports Shaikha Maitha Bint Rashid Al Maktoum Center for Special Needs
3.3.2010
Based on the directions of Professor Najib Al Khaja, Secretary General of Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences, and as a good initiative for cooperation between the Award and Al Maktoum Foundation, a delegation representing both institutions visited Sheikha Maitha bint Rashid Al Maktoum Center for Special Needs in Hatta.
Prof. Najib Al Khaja said that the Award and Al Maktoum Foundation are working together through an integrated system supported by H.H. Sheikh Hamdan Bin Rashid Al Maktoum, Deputy Ruler of Dubai and UAE Minister of Finance, who gives special attention towards helping all sectors of the society.
He added that the visit aimed at discussing ways of vital cooperation between the Award and the Center, which will be translated into reality in the near future through accurate medical diagnosis of the affected children and by holding training courses and public lectures directed to the population in Hatta and its neighborhoods to raise awareness on the serious impact of genetic disorders and the importance of premarital testing and newborn screening to reduce the spread of these disorders already causing negative impacts on individuals and the society.
Mohammed Obaid Bin Ghannam, Secretary General of Al Maktoum Foundation, praised the visit and said that he welcomes all forms of cooperation between the Foundation and the Award aiming at helping disabled people in the United Arab of Emirates, who need all forms of support to mitigate them and their families. He added that it is possible to take advantage of the extensive experience of the Award in the field of genetic disorders through the efforts of its ?Centre for Arab Genomic Studies? (CAGS).
The delegation included Abdullah bin Souqat ,Executive Director of Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences, Dr. Ghazi Tadmouri, Assistant Director CAGS, Dr. Lihadh Al-Gazali, Professor of Clinical Genetics in the Pediatrics Department at the Faculty of Medicine, UAE University, and Member of the Executive Committee of CAGS, Ms. Moza Hareb, Human Resources Executive at Al Maktoum Foundation. The delegation met Hichem Damergi, Acting Administrative for the Center.
Sheikha Maitha Bint Rashid Al Maktoum Center for Special Needs is considered the only center serving Hatta and its neighborhoods to serve children with special needs. The center is a large two-stories building especially designed to host children with special needs. The Center serves about 53 children with special needs and from various nationalities.
Admission requires an official certificate proving the status of the child. The Center offers care, education, and treatment for various types of disabilities including deafness, quadriplegia, Down syndrome, mild and severe mental retardation.
Mr. Abdullah Bin Souqat said that Sheikh Hamdan Bin Rashid Al Maktoum has a human feeling that puts vulnerable groups in the society at the top of his priorities. He added that this trend is the reason behind establishing the Award?s Centre for Arab Genomic Studies in 2003, to put a limit to spreading genetic disorders in the Arab World that compromise health and stability of Arab families.
He added that the visit will help children in the Center to be put on the right path, whether in terms of treatment or in terms of social rehabilitation in order to be enrolled in the society. He said that the society should change the perception of children with special needs and encourage their families to engage them in the society openly. He added that a special program is being prepared to contact the families of the children to persuade them on the importance of premarital testing and newborn screening to assure early detection of these diseases and to reduce their consequences in the future.
Prof. Lihadh Al-Gazali examined the children during the visit and said that the proper diagnosis of the disorders found among them is the first step for proper treatment.
Dr. Ghazi Tadmouri, Assistant Director of CAGS, said that CAGS has paid particular attention, since its establishment, to convey genetic information to all members of the society and to raise their awareness about genetic disorders through seminars, conferences, and publications.
Hichem Damergi, Acting Administrative of Sheikha Maitha Bint Rashid Al Maktoum Center for Special Needs, appreciated the visits and considered it as a productive step that meets well with the educational goals of the Center.
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‘Need to Frame Legal Norms for Genetic Research’
28.2.2010
Ahead of the 3rd Pan-Arab Human Genetic Conference to be held next month in Dubai, Dr Ghazi Omar Tadmouri, Assistant Director of the Centre for Arab Genomic Studies, stressed on the importance of study of genetic disorders among the Arab people at the DNA level, saying that this will help develop new therapeutic approaches. He was speaking on the emergence of genomic research globally over the past five-six years, which had given an insight into the genetic conditions behind diseases like cancer and conditions like diabetes and hypertension. More than 940 genetic disorders have been characterised in Arab people so far, said the senior genetist. “However, 280 of these disorders remain identified only at the clinical level,” he added. Genomic research maps more than one gene for disorders as compared to genetic research which focuses on a single gene, he explained.
He said study of these disorders would contribute to a better understanding of the processes controlling the function of the human genome and help provide diagnostic services to affected communities and families. It will also help reduce the spread and mitigate the symptoms of these disorders, and possibly suggest new therapeutic approaches based on the genetic backgrounds of affected individuals, he said.
However, with the spread of such new research models all over the world, a need has been raised to develop legal regulations governing the conduct of such research, an issue that will be addressed at the conference.
“Though such research is not being carried out in the UAE at present, the advancement in technology to carry out the research will soon or later be available here. And, for this reason, we need guidelines to govern this form of research in the country.”
“Investments in technology required to carry out such research are cheap and already being done worldwide,” added the doctor who is also member of the scientific committee of the conference.
The conference will also discuss a paper from the World Health Organisation’s regional office that deals with laws governing the application of genomic research at the global level, said Dr Mahmoud Taleb Al Ali, Director of CAGS.
“Developed research of genomic studies is now seeking clues for the genetic causes of many chronic and complex disorders such as cancer and hypertension usually resulting from defects in one or more genes in the human DNA,” he said.
By: Asma Ali Zain [Khaleej Times]
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