Scientists have succeeded to a large extent in controlling communicable diseases, malnutrition indicated by the decrease in the prevalence of these diseases – but due to urbanization and change in the life style of people – the category of chronic diseases such as cardiovascular, diabetes, cancer, environmental pollution started to emerge with an increasing prevalence rate especially in the developed countries. On the other hand, congenital anomalies, hereditary blood diseases, mental retardation and metabolic disorders have become more prevalent, may be due to the increased awareness on the part of physicians and their diagnosis. This was accompanied with the great progress in disciplines like human genetics, molecular genetics in particular, as well as human genetic engineering and the human genome. This great development will pave the way towards unfolding the secrets of human diseases in the future, the near future.
Identifying the healthy carriers of genetic disease has become an important task for specialists to avoid transmitting the disease and disability to their offsprings.
This is done in counselling centers for prevention of hereditary diseases to pick up that group of diseases thus lessening the disability and alleviating the resultant suffering.
The Executive Board, in recognition of the importance of these diseases, formulated a specialized Gulf Committee to propose a preventive, therapeutic and rehabilitative programme for such group of diseases to be implemented in phases as well as suggesting a plan for studies and research that may help in identifying the various aspects of problems.
The committee held its first meeting in Kuwait (26-28 March, 1995) where various aspects of the problems were discussed in the light of the available data in the member states. It was found that the most prevalent hereditary diseases in the Gulf Countries were hereditary blood disorders, metabolic disorders and hypothyroidism, followed by myathenia and cystic fibrosis, etc.
Based on this situation, the committee proposed the establishment of national committees to control hereditary diseases in each of the member states, with the objective of:
1. Setting the general policy for control of hereditary diseases.
2. Supervising manpower training in this field.
3. Follow up progress made and periodic evaluation, and,
4. Coordination with relevant agencies to continuously update knowledge in this field, and advance services provided.
In addition, the committee suggested the establishment of counselling centers for hereditary diseases in each of the member states, with divisions in each health directorate if possible.
The mission of the center is to:
● Establish the national registry for hereditary diseases and congenital anomalies.
● Setting a system for registration, notification, statistics and referral.
● Diagnosis of hereditary diseases previously referred to.
● Treatment and follow up of cases.
● Setting and implementing a training plan for technical cadres working in the hospitals and health centers.
● Supervising programs leading to minimizing the spread of such diseases.
● Conducting studies and surveys for hereditary diseases.
● Developing medical curricula to include hereditary diseases.Cooperation with hereditary diseases centers regionally, globally as well as with the international organizations, and follow up of recent advances in this field.
The Executive Body in its 43rd meeting (December 1995) recommended the implementation of these propositions at the national level of each of the member states. This was also raised in the 42nd conference in Abu-Dhabi in January 1997 by H.E. The Minister of Health of Saudi Arabia. The Health Ministers’ Council decided to buttress the work of the Gulf committee for hereditary diseases and give it full support to follow up its tasks.
The committee thus convened in Muscat, Oman on 2-3 March,1997 to follow the progress made in the Gulf States, and it emphasized the following:
1- Request on the member states which have not yet established national committees for hereditary diseases as well as consulling centers to initiate this as soon as possible in order to start its job as stated in the first meeting of the committee.
2- Intensifying the efforts for prevention of hereditary diseases through conduction of neonatal screening and encouraging pre-marital examination.
3- Supporting dissemination of hereditary diseases clinics and making full use of PHC network in each member states to provide counselling as regards hereditary diseases, as well as follow up of patients.
4- Working hard to establish Cytogenic and Molecular Laboratories in each member state of the Gulf region, and inter-cooperation in this regard.
5- Encouraging establishing societies of human genetics in the member states.
6- Introducing and developing human genetics in the medical colleges and other health institutions.
7- Emphasizing the role of health education in spreading awareness of such diseases and how to avoid them.
The committee held its third meeting in Kuwait (20-21 October, 1998) where it followed up the establishment of counselling centers in the main hospitals in the member states, and it recommended that the Gulf Committee for hereditary diseases in the Ministry of Health should be the body responsible for all the activities related to control of such group of diseases including clinical and lab. services, genetic screening and field studies as well as genetic counselling and pre-marital examination, conduction of genetic tests for pregnant mothers and neonatals.
The Executive Body in its 49th meeting (December 1998) adopted these recommendations and called upon the member states to establish their registers for the hereditary diseases and congenital anomalies. It also requested the Gulf committee for hereditary diseases to coordinate with its counterpart committee in the Arab Health Council in Cairo to avoid duplication.
The fourth meeting of the committee took place in Kuwait in 3-4/12/1420H (8-9 April 2000), while the Fifth meeting was held in Bahrain 12-13 Sha’ban 1424H (8-9 October 2003) where progress was assessed and emphasis was made on giving full support to hereditary diseases programmes.
It was called upon a Gulf Conference on hereditary diseases to be held in Bahrain in 2002, but due to its postponement to 2003 to give place for proper and appropriate preparation. The conference was held on 9-11 Sha’ban 1424H (5-7 October 2003) and issued very strong recommendations.
1. Establishing a Gulf Society for Hereditary Diseases.
2. Coordinating efforts to establish a database for expertise, facilities available in the Gulf states to facilitate communication and utilization of experiences and utilities for diagnosis, care and treatment as well as prevention of such diseases.
3. Coordination with regional and international organizations through conferences, symposia and training courses at all levels.
4. Strengthening scientific gatherings at the Gulf Region for familiarity with the most up-to-date advances in this field.
5. Supporting health research and application of its output to serve the Gulf Community in particular and the Arab community in general.
6. Evaluation and implementation of preventive measures for hereditary diseases, such as pre-marital testing, natal check up.
7. Intensifying field studies and research in the field of genetic diseases, and updating the database for such diseases and its utilization in planning prevention and care.
8. Periodic organization of the Gulf conference for genetics with regional and international participation to enrich and broaden knowledge and improve recent technology.
9. Man power training through continuous medical education.
The premarital check up (screening) is given a high priority in the member states. The following is a brief account:
United Arab Emirates:
It is optional and is conducted in MOH hospitals and is mandatory for those requesting assistance from “Marriage Fund” established to encourage nationals for marriage.
Kingdom of Bahrain:
This is done in Ministry of Health hospitals since 1992. Its adoption from the parliament is underway as a mandatory law. It is optional for national marriages and it is mandatory for non-Bahraini wives.
Kingdom of Saudi Arabia:
In Muharram 4, 1423 H, a ministerial resolution was issued adopting the pre-marital screening for those who are willing to do so as a preliminary stage. It was then followed by a Royal decree on 17th, Ramadan 1423H requesting the concerned bodies in the MOH to study the possibility of making this screening mandatory.
The screening is done in the MOH Hospitals since 1999 and it is optional (there are special clinics for this test).
The premarital check up (screening) is optional for Qatari nationals, and it is mandatory for non national wives.
This screening is conducted in the hereditary centers and its clinics in other hospitals on optional basis.
The screening is done only for genetic diseases and it is optional.
The Gulf Genetic Diseases Committee held its 6th meeting in Kuwait 27-28 Sha’ban 1425 (11-12 October 2004) which resulted in a number of recommendations, the most important of them are :
1- Calling upon the member states to participate in the he First Kuwait, and Second Gulf Conference on Hereditary Diseases to be held in Kuwait, 12-14 February 2006.
2- A web site for each hereditary center should be made available and should contain studies and research conduced in this field, with regular update. Bioinformatics service should also be made available for these centers.
3- Strengthening the consultative role of health centers in hereditary diseases. A hereditary clinic is to be set up in the health centers just like the mini-clinics initiative, after training and qualification of physicians in charge on the basics of genetics, genetic counseling. In the same time, they should be linked with the hereditary centers for reference.
4- Full utilization of existing hereditary laboratory in the GCC states which perform molecular tests, and its continuous development aiming at making them reference laboratories in the future.
5- Coordination with EMAN project to include survey of hereditary diseases especially blood diseases.
6- Coordination with the Gulf Committee for Health Education to launch a Gulf Health Education plan about hereditary diseases, pre-marital testing, etc.
7- Training of human power in the member states which have strong hereditary services.
8- Teaching genetics and hereditary diseases as a core subject in the medical curricula, as well as in CME progammes.
9- Conduction of studies that evaluate the effects of interventions made and the health education efforts on the prevalence rates of such diseases esp. blood diseases and congenital anomalies.
The committee continued its meetings, the last meeting was held in Yemen (23-24 Safar, 1428/13-14 March 2007) which issued a number of recommendations which were discussed in the 66th meeting of the Executive Body (Riyadh, 14-16/3/1428 H/15-14/4/2006 ) in addition to the recommendations issued by the First International Conference on Genetic Diseases (Kuwait 2-4 April 2007) and recommendation # 9 was issued, which involved:
1- The committee members in each state should prepare a detailed report including all aspects related to genetic diseases, e.g. support given by the state (MOH), genetic centers, human resources available, legislations especially those for pre-marital check up, studies and research, within 2 months.
2- The member states should issue legislations that deal with genetic diseases, pre-marital examination, similar to what currently exists in Saudi Arabia and Bahrain.
3- Kuwait will host a Gulf workshop to put a Gulf workplan/ strategy for control of genetic diseases. The following table summarizes the current situation.
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