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Available data indicate that the health burden of genetic disorders is as significant in some countries of the Region as in the industrialized world

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In the Name of God, the Compassionate, the Merciful

Address by

DR HUSSEIN A. GEZAIRY REGIONAL DIRECTOR

WHO EASTERN MEDITERRANEAN REGION to the

THE NINTH SYMPOSIUM ON GENETICS IN HEALTH AND DISEASE–

IMPLICATIONS FOR THE INDIVIDUALS, FAMILY AND COMMUNITY 11–13 Shaban 1425 AH (25–27 September 2004)

King Saud University, College of Medicine, Department of Medical Biochemistry

Ladies and Gentlemen,

It is with great pleasure that I welcome you to the ninth symposium on Genetics in Health and Disease – Implications for the Individuals, Family and Community, being held at King Saud University. Congenital and genetic disorders are an emerging health problem in all Member States of the Eastern Mediterranean Region of the World Health Organization. This is because improved medical care is unveiling intractable problems that were previously hidden in high infant and childhood mortality. Available data indicate that the health burden of genetic disorders is as significant in some countries of the Region as in the industrialized world. Some of these disorders, particularly haemoglobinopathies, are extremely common in the Region.

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Recognizing the increasing importance of congenital and genetically determined disorders in the Region, WHO’s Regional Office for the Eastern Mediterranean has undertaken a number of initiatives to assist Member States in establishing programmes and implementing activities to prevent and control these disorders and to improve health care services for the individuals and families affected. The epidemiological situation of hereditary disorders was initially reviewed and a regional task force, set up by the Regional Office in 1993, identified specific priorities for prevention based on the needs of the countries of the Region. Subsequently, a Regional Consultation on Community Genetics Services was held in the Regional Office in 1994 at which preventive strategies were discussed, and in 1997, the Regional Office published Community Control of Genetic and Congenital Disorders, which provided technical and managerial guidelines for the establishment of prevention and control programmes.

Ladies and Gentlemen,

The rapid growth of genomics and its application to medicine provide an unparalleled opportunity to advance the health of all. At the same time, the ethical, legal and social implications of genomics have come into sharper focus. Media reports have featured a range of ethical, legal and social issues arising from genomics, ranging from the possible use of genetic enhancements to the ethical conduct of genetic research in vulnerable populations. Increasing public interest has made the ethical, legal and social implications of genomics a priority for many organizations in countries that have active research programmes in genomics.

The World Health Organization’s focus is on reducing excess mortality, morbidity and disability from genetic disorders. Within the Regional Office, we promote improved health in less developed countries by bringing the health dimension to social, economic, environmental and development policy. The Regional Office can use this role to ensure that the increasingly real benefits of genomics reach populations in need. However, care must be taken to ensure that communities have the opportunity to voice their concerns about the ethical, legal and social implications of genomics in the context of their own country situations.

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Unfortunately, some communities lack even basic health services. There is little logic in advancing the cause of genomics in such situations. The priorities for these communities are fundamentally different and need to be addressed in other ways.

Indeed, advances in genomics can only be used in the context of effective genetics services, including counselling and public education. Countries of the Region vary in their capacities in this area. Some may not have the resources to set up appropriate genetic services. Others provide genetic services but need assistance to improve equity of access to these services.

There is an urgent and growing need for systematic national and international initiatives and activities to reduce the health burden of congenital and genetic disorders.

In December 1999, a group of WHO advisers met in Cairo to review the global epidemiology of congenital and genetic disorders, and identify evidence-based interventions for their prevention and control. They recommended approaches for incorporating appropriate interventions into primary care at country level, and suggested coordination among regional centres.

To address these challenges, more regional genetics centres are needed to coordinate activities. There are many success stories for the prevention of genetic diseases, such as the adoption of premarital screening in Saudi Arabia, which is one of best modalities for prevention of haemoglobinopathies.

Professor Mohsen Hazmi and the WHO Collaborating Centre for Genetics in Riyadh have provided excellent collaboration in genetics among the countries of the Region, particularly the GCC countries, as well as excellent training workshops on genetic diseases, which could be considered as models for the Region.

Ladies and Gentlemen,

Prevention and control of genetic diseases requires appropriate attention, planning and evaluation. Ignorance and lack of knowledge of certain aspects related to genetic care can be damaging and potentially lethal.

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Despite the moderate achievements made in prevention and control of genetic disorders in our Region, genetic diseases remain a public health problem that has not yet received adequate attention.

Thank you.

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