In the late 70s, major developments led to the modernization of medical services in Kuwait with the birth of three regional hospitals. In addition, specialized centers for allergies, cancer, dermatology, renal and gastrointestinal disorders emerged.

It was during this period that the Kuwait Medical Genetics Center (KMGC) was established in 1979 under the auspices of the Ministry of Public Health. In contrast, at that time, five genetic centers in Egypt were housed only in the medical colleges of Ain Shams, Alexandria, Cairo, and Mansoura Universities, and the National Research Center.

(1) During the preparatory stage of the KMGC, a humble weekly genetic clinic was established in the paediatrics department at Al-Sabah hospital. At the time, the cytogenetics analyses was conducted at the Faculty of Science of Kuwait University.

(2) Soon after the establishment of the KMGC in the Maternity Hospital, daily clinics were held there and a well-equipped cytogenetics laboratory was created on site.

(3) The establishment of the 3 regional hospitals (Al-Jahra, Al-Farwaniya, and Al-Adan) encouraged the KMGC to start regional satellite genetics clinics at each facility.

(4) These clinics grew to become regional liaison-community genetics programs with their own penta-axial model (Service, Education, Teaching, Register, and Research).

(5) The success of this model ensured complete coverage of all six regional hospitals.

(6) Additional clinics were established at the Cancer Center and the Center for the Handicapped. Weekly visits by a well-trained paediatric geneticist to the daycare centers setup by the not-for-profit organization for teaching and caring for children with special needs.

(7) Helping in the development of the first psychiatric clinic in the Maternity Hospital to offer supportive psychotherapy for some cases that can smooth their psychological haemostasis.

(8) Over the years, several units were developed in the KMGC including clinical genetics, cytogenetics, biochemical genetics, genetic epidemiology, and social work. The molecular genetics unit was established in 1995.

(9) A library of books, references, and journals was collected to assist KMGC staff. Subscriptions to all major international journals are maintained for all doctors and scientists with an interest in medical genetics.

(10) Special computer programs are available to assist diagnosis and delineation of rare syndromes. A national computer registry was created to maintain a database of all patients with a separate Kuwait Cytogenetic Registry (KCR), in addition to regional genetic register systems.

Principles, Philosophy and Practice of Community Genetics in Kuwait

Clinical Genetics is the science and practice of diagnosis, prevention and management of genetic disorders. Applied Community Genetics Model in Kuwait has five major characteristics:

THREE: Three-Dimensional Development
          i) Effective (Emergency)
          ii) Comprehensive Solution (wider approach)
          iii) Sustainable (long-term solution)

i) Primary health care in health centers offering curative, preventive, and rehabilitation services for all regions

ii) Secondary health care in six general hospitals offering medical services with its different units in medicine surgery, gynaecology and obstetrics, paediatrics ophthalmology, ENT, orthopaedics and dermatology

iii) Tertiary health care in the KMGC and other specialized centers (Maternity Hospital, Ibn Sina Hospital for specialized surgeries, Al-Razi Orthopaedic Hospital. Al-Rashed Center for Allergic diseases, Hussein Maki Gomaa Cancer Center, Al-Ghanem Center for Gastrointestinal Disorders, Psychological Medicine Hospital, etc

iv) The Fourth step in the Community Genetic approach is consulting international genetic centers with rare cases for precise diagnosis and management.

The Kuwaiti Penta-Axial S.E.T.R.R. Model

SERVICE - The precise diagnosis of disease and offering non-directive informative and supportive genetic counselling

EDUCATION - Offering mass health education through the daily press, radio and television, in schools and direct communication with families, which has to respect local cultural beliefs.

TEACHING AND TRAINING - To doctors, social workers, nurses and psychologists. Training primary healthcare workers to be partners in the model and become genetic associates to help in primary, secondary and tertiary preventative approaches (Prevention is better than no cure!).

REGISTRY - All cases reporting to the KMGC or its regional satellite clinics are entered into a computer registry to maintain a detailed database to improve services. A Kuwait Cytogenetic Register (KCR) was born in 1989). Data from the KCR was presented at the International Chromosome Conference, Edinburgh, 1996 and at London, UK, 2004. Both the Arab Genetic Disorders Database and the encyclopedic textbook, Genetic Disorders Among Arab Populations (Teebi & Farag, 1997) include the ascertained data of all monogenic and cytogenetic disorders.

RESEARCH - With the diminishment of infant and child mortality and morbidity rates and the elimination of contagious and nutritional disorders, genetic epidemiology and research is important and proved to be very essential in preventing and treating many diseases. Molecular studies in the KMGC helps precise diagnosis and in developing appropriate means of preventative and management strategies.

Our Genetic Observations

The Kuwait Regional Liaison-Community Genetic Program is not a clone of Western models. Our experience as community geneticists in Kuwait revealed the importance of considering cultural diversity, and patterns that differ from those of Western cultures. These include:

• High inbreeding co-efficient, large family size with a plethora of autosomal recessive syndromes.

• Many new syndromes. The first autosomal recessive syndrome published from Kuwait was titled Al-Awadi Syndrome (Al-Awadi et al. 1985). Similar cases were later reported with this syndrome in Brazil and Italy. Recently three new cases were ascertained in Kuwait.

• Inbreeding revealed clustering of homozygous dominant familial hypercholestrolemia which was reported in Lebanon and South Africa.

• Genetic blood diseases: thalassemias, sickle-cell anaemia and G6PD deficiency, represent a problem in the Gulf region

• Inbreeding was raised by some scientists to explain clustering of aneuploidy syndromes (trisomy 21, trisomy 18, and trisomy 13) due to non-disjunction.

Arab Community Geneticists’ Observations

Arab community geneticists found that at least eight genetic diseases have a high incidence among Arab live births, as documented in Genetic Disorders Among Arab Populations (1997).

First Cousin Marriages Among Arabs

Country	Average %	Reference
Algeria	10-16%	Zaoui & Biemont 2002
Bahrain	21%	Al-Arrayed 1995
Egypt	12.4%	Hafez et al. 1985
Egyptian Nubia	39.1%	Hussien 1971
Iraq	29.2%	Hamamy et al. 1986
Israeli-Arabs	22%	Jaber et al. 2000
Jordan	32%	Khoury & Massod 1992
Kuwait	30.2%	Al-Awadi et el. 1985
Lebanon	7.9 - 17.3%	Khlat 1988
Oman	24.1%	Rajab & Patton 2000
Palestinian Arabs	22.6%	Zlotogora 1997
Saudi Arabia	17.9 - 40.9%	El-Hazmi et al. 1995
United Arab Emirates	30%	Al-Gazali et al. 1997
Yemen	36%	Jurdi & Saxena 2003

In 1996, Hoodfar & Teebi proved that Middle Eastern immigrants to Montreal showed a significant inbreeding rate compared with non-Middle Eastern populations

Disease Profile in Kuwait

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The Regional Liaison-Community Genetic programs have succeeded to report and present the disease profile of Kuwait. More than 400 papers were published in American, British, European, and Arab medical journals including both the Kuwait Medical Journal and Medical Principles and Practice.

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Over 500 genetic disorders were published in Genetic Disorders Among Arab Populations edited by AS Teebi and TI Farag (Oxford University Press, 1997). Interestingly Bardet-Biedl Syndrome and Meckel-Gruber Syndrome proved to be common in Kuwait, while Familial Mediterranean Fever (FMF) is common among Jordanian and Palestinian populations.

ØFor more information about monogenic diseases in Kuwait, please visit the OMIM and the Arab Genetic Disorder Database (AGDDB).

For more information about chromosomal abnormalities in Kuwait, please visit the Kuwait Cytogenetic Registry (KCR), Borgaonkar’s catalogue of Chromosomal Variations in Man, and Schinzel’s Catalogue of Unbalanced Chromosome Aberrations in Man. A forthcoming Middle East Chromosomal Abnormality Database (MECAD) will include all the Chromosomal abnormalities detected in the KMGC cytogenetics laboratory during the last 25 years.

Major Achievement of KMGC

1.Establishment and Success of the Kuwaiti Community Genetics Penta-Axial S.E.T.R.R. Model. We were honoured to present this model at Nasser Institute in 2000 during the establishment of the Egyptian community genetic models
2.Establishment of collaborative TEAMs with consultants of different specialization from Kuwait University, the Ministry of Health, and the Ministry of Social Affairs.
3.Successful Dietetic Counselling which helped to diminish the incidence of neural-tube defects.
4.Neo-natal biochemical screening for PKU and congenital hypothyroidism.
5.KMGC partnered for the success of the 1984 test-tube baby in Kuwait’s Maternity Hospital. This service is now available for childless married couples.
6.Liaison psychiatric clinic in the Maternity Hospital for supportive psychotherapy.
7.Joining rehabilitation teams in both governmental and not-for-profit organizations including schools for autistic, blind and deaf children.
8.Establishment of the Kuwait Down Syndrome Association and enrolling children with Down Syndrome in public schools.
9.Strengthening of scientific relations and collaboration in the Gulf region and throughout the Arab world.
10.The KMGC has gained a worldwide reputation for research on medical genetics. Has a credible presence in all European, North American and worldwide genetic communities. Published extensively in many top genetics journals and built strong relations with up to 50 major international specialists with whom some of the center’s work has been published.
11.The founder of the KMGC, Dr. Sadika A. Al-Awadi, was offered the WHO Down Syndrome Research Prize and Dr. Ahmed S. Teebi was offered the Sheik Jaber Al-Sabah’s Prize.
12.Both the Genetics Disorders Among Arab Populations textbook and the AGDDB were born in the KMGC.

Kuwaiti Community Geneticists

In this new science of medical genetics, women in all Arab countries have succeeded to prove themselves and have contributed greatly to this discipline. Interestingly, the first Arab geneticist was the late Prof. Naimat Hashem, founder of Ain Shams Medical Genetics Centre and in this international conference 40% of the presentations will be given by Arab female geneticists.

In Kuwait: Over the past 25 years, ten qualified Kuwaiti women succeeded to earn excellent scientific credentials. All of them have excellent contribution to the Kuwait community genetics program:

Dr. Sadika A. Al-Awadi, MD (Dublin), FRCP (Edin)
Dr. Laila Bastaki, MD (Ain Shams)
Dr. Makia Marafie, PhD (Nottingham)
Dr. Sawsan Abou Al-Hassan, PhD (Glasgow)
Dr. Fawzia M. Mohammed, PhD (Glasgow)
Dr. Lolwa Al-Garyan, PhD (Glasgow)
Dr. Nadia Al-Turki, MSc (London)
Dr. Reem Al-Dabbous, MSc (London)
Amira Reda, MSc (Glasgow)
Mariam Reda, MSc (Glasgow)

In Bahrain: Dr. Shaika Al-Arrayed

In Egypt: Prof. Samia El-Temtamy, Prof. Ekram Abdelsallam, Prof. Suzan Ismail, Prof. Rabah Shawky, Prof. Samia Kotb and Prof. Nagwa Abdelmagid

In Iraq: Prof. Hanan Hamamy

In Oman: Dr. Anna Rajab and Prof. Zakia Al-Lamki

In Saudi Arabia: Prof. Nadia Sakati and Prof. Aida Al-Aqeel

In Tunisia: Prof. Habiba Chaabouni

In UAE: Prof. Lehada El-Ghazali

Many male Arab geneticists have succeeded in gaining an international reputation: Prof. Omar El-Alfi (California), Prof. Khaled Al-Nassar, Prof. Fahd Al-Mulla (Kuwait), Prof. Mohsen El-Hazmi (Saudi Arabia), Prof. Khaled Gomaa (Sudan), Prof. Riad Bayoumi (Oman), Prof. Mohammed Hafez , Prof. Mohamed Awadallah, Prof. Mohammed El-Sawi, Prof. Ezzat El-Sobky and Prof. Kamal Naguib (Egypt) and our friend Prof. Ahmed Teebi (University of Toronto).

The Community Geneticist

For this community model to succeed, the medical geneticist has to be a qualified, knowledgeable, well-trained specialist who is:

1)A good methodologist (good listener, interpreter, diagnostician, risk-calculator and communicator)
2)A good lumper and good splitter
3)A good non-directive genetic counsellor (both informative and supportive)
4)A good healer
5)A good health educator
6)A good epidemiologist
7)A good research fellow
8)A humanitarian who is convinced of the medico-social approach
9)Has to ensure the presence of appropriate follow-up of his/her counselees and help in the establishment of “support groups”.
10)Must combine a hybrid of three abilities; medicine, science, and art
11)Must be convinced that “TEAM” means “Together Each one Achieves More” and has to consider ways to incorporate family doctors as members of the genetics team.
12)Must work on changing the disease profile of the community and not to be a “stamp-collector” or “gene-hunter” alone
13)Has to be both service-oriented and research-oriented
14)Must be immersed in the local culture to understand their traditions and values in order to recognize the endogenous beliefs
15)Has to respect cultural diversity and to know that consanguinity is a deeply-rooted cultural trend among Arabs. He/she has to inform families with high risk autosomal recessive disorders on the benefits of pre-marital genetic counseling.
16)Has to be familiar with both population genetics and pedigree genetics.
17)Has to be familiar with the AGDDB, the KCR, and the Genetic Disorders Among Arab Populations textbook.

Selected Pedigrees

Among the 115 new monogenic disorders reported among the Arabs in 1997;

Ø100 were autosomal recessive,

Ø10 autosomal dominant, and

Ø5 sex-linked

Fig. 5 - Some autosomal recessive pedigrees from Kuwait (Teebi & Farag 1997)

Selected Syndromes

Al-Awadi Limb/Pelvis-Aplasia/Hypoplasia Syndrome

Selected Cartoons

The distinguished German scientist Prof. Karl Sperling’s book entitled, Gene-An-Tics which includes interesting cartoons by international scientists. The first cartoon shows different interpretations , the second gives a warning to molecular geneticists to avoid becoming like the DNA double helix, and the third cartoon includes best wishes from Picasso's surrealism.

Kuwait Has a Dream

Kuwait Has a Dream of a Healthy Community free of mutagens, teratogens and carcinogens.

Kuwait Has a Dream to eradicate genetic disorders, major congenital anomalies and mental retardation.

Kuwait Has a Dream to establish a genetic registry similar to that of Edinburgh’s successful RAPID system (Register for the Ascertainment and Prevention of Inherited Disease) which was introduced by Prof. Alan Emery and Dr. Susan Holloway in 1974.

Kuwait Has a Dream of studying Dr. Stefansson’s “de- CODE Iceland’s molecular studies model”, where he isolated 15 gene variants for 12 diseases including stroke, schizophrenia, diabetes type 2, heart attack gene and osteoarthritis. His discoveries in the Islanders’ genetic homogenous population may help to discover cures.

Kuwait Has a Dream to establish an International School of Community Genetics to teach young doctors, psychologists, social workers and nurses and to establish the Kuwait Journal of Community Genetics.

By Dr. Sadika A. Al-Awadi (Kuwait) & Prof. Talaat I. Farag (Canada)

Historiography of the KMGC

Principles, Philosophy and Practice of Community Genetics in Kuwait

The Kuwaiti Penta-Axial S.E.T.R.R. Model

Our Genetic Observations

Arab Community Geneticists’ Observations