1st Pan Arab Human Genetics Conference - Centre for Arab

72 Pages·2006·2.49 MB·English

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H. E. Humaid Mohammad Obaid Al Qutami
Minister of Health, United Arab Emirates
Chairman, Board of Trustees,
Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences
Scientific research and continuous development of human knowledge are important compo -
nents for promoting modern sciences. In accordance with this concept, the Centre for Arab
Genomic Studies plays an important role in the medical and genomic research activities in the
United Arab Emirates.
This effort is a natural reflection of the wise leadership headed by H.H. Sheikh Khalifa Bin
Zayed Al Nahayan, President of the United Arab Emirates, H.H. Sheikh Mohammad Bin
Rashid Al Maktoum, Vice-President and Prime Minister of the United Arab Emirates and
Ruler of Dubai, and their Highnesses Members of the Supreme Council of Rulers of the
Emirates. In fact, the Centre for Arab Genomic Studies came to existence only following the
prudent vision of H.H. Sheikh Hamdan Bin Rashid Al Maktoum, Deputy Ruler of Dubai and
Minister of Finance and Industry, to establish Sheikh Hamdan Bin Rashid Al Maktoum Award
for Medical Sciences in 1999 with the aim to support and develop medical research in the
country.
The present conference, held for the first time in Dubai, is an important testimony of the sin -
cere efforts exerted by the Centre for Arab Genomic Studies to investigate genetic disorders
available in Arab people and to strengthen mutual Arab cooperation to build a common data -
base of genetic disorders encountered in the region. This is an impressive effort that was soon
recognized by many international bodies including the Human Genome Organisation, which
we proudly welcome in this event.
Despite the recent inception of the Centre for Arab Genomic Studies, its achievements have
been unmatched in the region. I sincerely do wish all the success to the First Pan Arab Human
Genetics Conference.
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Prof. Najib Al Khaja
General Secretary,
Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences
President, Centre for Arab Genomic Studies
Congenital disorders are very common in the Arab World and their prevalence is considered
as the highest worldwide. Because of those diseases, many patients suffer and, unfortunately,
the genetic causes of many abnormalities remain unknown. Genetic disorders are usually
related to social measures such as high rates of consanguinity, the trend to have many chil -
dren, and the lack of proper knowledge about inherited disorders.
The direct follow-up of His Highness Sheikh Hamdan Bin Rashid Al Maktoum, Deputy Ruler
of Dubai and Minister of Finance and Industry, of medical activities, resulted in the establish -
ment of his Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences. He also
paid special attention to launch the activities of the Centre for Arab Genomic Studies to
closely examine genetic disorders occurring in the United Arab Emirates and the rest of the
Arab World.
Since the establishment of the Centre in 2003, it has been able to accomplish most its objec -
tives in the United Arab Emirates by building a database of genetic disorders in the country
that is publicly available through the Centre’s website to all scientists interested in genetic
disorders.
Today, the Centre is aiming to broaden its database by including all diseases occurring in
Arab individuals and by building a strong link to all centers and scientists interested in human
genetics in the region. For that target the Centre for Arab Genomic Studies recently formed
its Arab Council which includes eminent Arab scientists working on human genetics.
We are happy to welcome our guests from the Human Genome Organisation, who are attend -
ing the First Pan Arab Human Genetics Conference. It is our aim to build strong relations
with international organizations in order to initiate exchange of information between the Arab
World and international organizations.
We are confident that the standards of the conference will be very high since distinguished sci -
entists from the Arab World and from International institutes will participate in the scientific
program.
I wish you all the best and a happy visit to Dubai.
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Prof. Leena Peltonen-Palotie
President, Human Genome Organisation
Academy Professor, University of Helsinki, Helsinki, Finland
The Broad Institute, Boston, MA, USA
One of the roles of the Human Genome Organisation (HUGO) is to encourage and promote
international collaboration and co-operation. The global members of the scientific communi -
ty are natural collaborators and we are at our most productive when we share our thinking.
This is not only achieved by collaborations that cross academic boundaries into medicine,
genetics and biochemistry but also collaborations on the personal level. The rewards and ben -
efits of the results from the increasing knowledge generated by the human genome project
must be made available to all and not retained for the wealthy nations only. The massive
amount of new genome-wide information that is now being generated will underpin research
on human biology and disease in this century and beyond. Geneticists worldwide are facing a
tremendous challenge to wisely read and use this information. This information must be trans -
lated into knowledge and understanding of biology and better actions to alleviate, treat and
eventually to cure. These are exciting times for genome science and it is no longer a margin -
al field of biology, but offers a real opportunity to contribute to the betterment of mankind.
HUGO's Council is also committed to the encouragement of this science to the next genera -
tion. These young researchers need to be supported and given the tools to do world-class sci -
ence. It is in the interest of all that the best minds are encouraged to generate new knowledge
and new technologies. HUGO also is committed to promoting a greater understanding to the
wider lay audience.
As President of HUGO I have great pleasure in sending my best wishes to all the delegates at
this 1st Pan Arab Human Genetics Conference who represent so many countries in the region
and hope that this conference will be the first of many successful events.
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Dr. Mahmoud Taleb Al Ali
Director, Centre for Arab Genomic Studies
Chairperson, Scientific Committee of the
First Pan Arab Human Genetics Conference
The Centre for Arab Genomic Studies is pleased to welcome you all to the 1st Pan Arab
Human Genetics Conference (April 4-6, 2006) in Dubai, United Arab Emirates.
Human capital constitutes the most critical element of the health system and forms the basis
for the realization of national health goals in any country. In the Arab world, human genetic
disorders and congenital abnormalities continue to challenge all progress achieved in recent
decades in health care systems. In fact, close to 950 congenital abnormalities and genetic dis -
orders do occur in Arab populations and are responsible for large numbers of perinatal and
neonatal mortalities.
The completion of the Human Genome Project marked the start of the exciting era of genom -
ic applications in medicine and health to recognize and treat human disease at its genetic
roots. Accordingly, this conference is organized to provide a platform for dialogue and edu -
cation on issues related to human genetics and to bring together Arab and international
experts to set the priorities for research on genetic disorders in the region. In this regard, we
do warmly thank the Human Genome Organisation (HUGO) for its active participation and
support to the conference. We also feel very proud that the first step of HUGO towards the
Arab world is being achieved through the Centre for Arab Genomic Studies.
During the conference, the Centre for Arab Genomic Studies welcomes for the first time mem-
bers of the recently formed Council of CAGS representing a number of Arab countries. The
Council of CAGS was formed with the aims to facilitate the exchange of information on genet -
ic disorders occurring in Arab countries and to orchestrate data collection from the region
similar to the effort CAGS achieved in the United Arab Emirates. The current, and prelimi -
nary, Council of CAGS includes a number of regional scientists from Bahrain, Egypt, Jordan,
Kuwait, Lebanon, Oman, Qatar, Saudi Arabia, Sudan, and Tunisia. In the future, CAGS will
extend memberships to a larger group of scientists and include other Arab countries accord -
ing to a stepwise model in accordance to the expanding activities of CAGS.
I welcome you all in the lively city of Dubai and wish success to all participants in the
conference.
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SHEIKH HAMDAN BIN RASHID AL MAKTOUM
AWARD FOR MEDICAL SCIENCES
Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences was established in 1999 under
the patronage of H.H. Sheikh Hamdan Bin Rashid Al Maktoum, Deputy Ruler of Dubai and Minister
of Finance and Industry with the objective of honoring scientists from every part of the world who
tirelessly pursue distinctive medical research that serves the larger interests of humanity.
The initial focus of the foundation was on two major categories of awards, the International and
National categories. In the international category, there were three sections, the Grand Hamdan
Award, three Research Excellence Awards and four awards for volunteers in humanitarian medical
services. In subsequent years, an additional category of the Arab World Award was introduced fol-
lowed by an additional award to the UAE category - an award for the clinical department in the pub-
lic sector. Today, the foundation’s emphasis is on supporting and encouraging scientific research in
the UAE with the provision of research grants. This activity has already yielded excellent results with
publications in reputable journals.
The last three award terms proved to be widely successful as recognized by international observers
and testified to by leading researchers vying for the award. This success reflects on the foundation’s
international reputation and its high scientific credibility and level of performance.
Another milestone in the history of the foundation was the opening of a centre for genetic research
as a part of the research support in the United Arab Emirates. The Centre for Arab Genomic Studies
was established in the year 2003. The vision of H.H. Sheikh Hamdan Bin Rashid Al Maktoum to alle-
viate human suffering from genetic diseases in the Arab World crystallized in the establishment of
the Centre to characterize and prevent genetic disorders and transfigure the future practice of health
care in the region. 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. A local committee of scientists has been estab-
lished to create an initial genetic diseases database and to prepare a two level scientific study the
objective of which is first, to create a local database in which locally prevalent genetic diseases are
registered, and then to incorporate data on genetic diseases from other Arab countries.
The foundation is now in the fourth term of awards and besides enriching scientific research, it has
an additional objective of enhancing the nature of scientific interaction between doctors in this coun-
try and the overseas medical centers.
The Fourth Award Ceremony and the Dubai International Conference for Medical Sciences will be
held in Dubai from 18 -21 December, 2006. We invite you to participate in this seminal event.
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CENTRE FOR ARAB GENOMIC STUDIES
Genetic and congenital disorders are responsible for a considerable proportion of perinatal and
neonatal mortalities in Arab populations. At present, congenital malformations are the second lead-
ing cause of infant mortality in countries of the Gulf Cooperation Council (GCC), including Bahrain,
Kuwait, Oman, and Qatar.
In the United Arab Emirates (UAE), the significant changes in the health system, including enhanced
and advanced genetic services, have revealed that a high frequency of genetic disorders exist in the
country, particularly autosomal recessive traits.
The vision of H.H. Sheikh Hamdan Bin Rashid Al Maktoum to alleviate human suffering from genet-
ic diseases in the Arab World crystallized in the establishment of the Centre for Arab Genomic
Studies (CAGS) on 25th June 2003 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 genet-
ic 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 pro-
grams.
The Centre for Arab Genomic Studies includes two scientific committees: The Executive Board of
CAGS is composed of a number of local scientists and it represents the governing body and the
legal trustee of all activities of the centre. The Council of CAGS includes a number of regional sci-
entists and it facilitates the exchange of information on genetic disorders occurring in Arab countries.
Countries represented in the Council of CAGS currently include: Bahrain, Egypt, Jordan, Kuwait,
Lebanon, Oman, Qatar, Saudi Arabia, Sudan, and Tunisia. In the future, CAGS aims to extend
memberships to a larger group of scientists and include other Arab countries.
In 2004, the Centre for Arab Genomic Studies initiated a pilot project to establish the “Catalogue of
Transmission Genetics in Arabs” (CTGA) database of genetic disorders in Arabs
(www.cags.org.ae). CAGS coordinated the collection of data on genetic disorders in the UAE pop-
ulation as a model system to be implemented in other Arab countries in the future. The sources of
information included nationally- and internationally-published literature as well as local laboratory
records.
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At present, CTGA hosts entries for approximately 1000 phenotypes and related genes described in
Arab individuals. Of these, about 250 phenotypic descriptions and related genes were observed in
the Arab population of the UAE. The wealth of information that CTGA database is accumulating is
an indispensable tool for scientists to recognize Arab colleagues working in similar domains and to
decide on possible collaborations or exchange of knowledge.
Currently, the priority of CTGA is to provide timely information on the occurrence of genetic disor-
ders in Arab individuals. It is anticipated that data from Arab countries other than the UAE will be
exhaustively searched and incorporated in CTGA.
In order to play a positive role among international scientific societies, CAGS aims at publishing its
results in international and regional peer-reviewed journals. The first technical report on the struc-
ture and characteristics of the CTGA database were published in January 2006 in the special
Database Issue by the eminent journal Nucleic Acids Research. In the future, CAGS will contribute
to a series of articles highlighting the continuously growing content of the CTGA database as it
expands and covers new populations.
Following the recent completion of the project to unravel the DNA sequence of the human genome,
focus in the Centre for Arab Genomic Studies is to conduct functional genomic studies. These
include large-scale or global investigations of gene function and dissection of complex regulatory
pathways. The presence of many genetic disorders in the region with unknown molecular patholo-
gies offers an excellent opportunity for local researchers to contribute to this global effort. A large
number of genetic disorders in the Arab World are only confined to local family structures and were
not described elsewhere in the world. The study of the genetic pathologies leading to these disor-
ders will help us to understand the functions of the associated genes in health and disease states
as well as pave the way to design specific prevention and treatment programs for each of these dis-
orders.
Although the extended consanguineous family structures, commonly present in Arab societies, lead
to the propensity of severe congenital inherited diseases in the country, they also tend to display
peculiar distribution patterns for those disorders not present in many other world populations. A
major model that explains this concept is the vertical dissemination of a genetic mutation in an Arab
family, where mutation carriers mostly remain concentrated within the extended family; thus, offer-
ing great opportunities to depict the genetic nature of their disease predisposition. In fact, the Centre
for Arab Genomic Studies offers an important opportunity to develop such a strategy since it initiat-
ed links to global centers with a room for further development of partnerships within the Arab World
and at international platforms.
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