SELECTED STUDIES

Pre-Marital Counseling in the Sultanate of Oman

By Dr. Anna Rajab
Consultant Medical Geneticist, Royal Hospital

Genetic Disorders in Oman

Oman's society has a long tradition of consanguinity which goes back to pre-Islamic times. The population has remained constrained by tribal boundaries which led to clustering of genetic diseases within genetic isolates. The study of tribal structure has helped the understanding of the distribution of genetic diseases and the establishment of preventive models.

We can proudly state that the information about genetic disease that has been ascertained in Oman is impressive compared to other countries of the Middle East with the success of pre-marital counseling programs. The country's Ministry of Health has considered control of genetic diseases with special plans to control genetic blood disorders as a first step. Clinical Genetics services have been operational for a decade at the Royal Hospital, a national tertiary referral center with a well-established cytogenetic laboratory and 3 separate registries for the following genetic diseases:

1) Genetic blood disorders (Homozygous sickle cell anemia and thalassemia major). The first registry of thalassemia was initiated in 1983.
2) Dysmorphic syndromes and congenital malformations.
3) Metabolic disorders

A national survey showed that genetic blood disorders are common and that 10% of Omanis are gene carriers for sickle cell anemia and 3% for Beta-thalassemia. Both conditions will lead to disability and death if left untreated and require life-long medical care. There are around 2,000 cases of symptomatic sickle cell anemia, primarily children, which receive treatment in the hospitals of the Sultanate. Each year there are at least 120 cases among the newborn. There are also approximately 300 cases of Beta-thalassemia in Oman with an annual increase of 20-25 cases. The recently formed section of genetic blood disorders working towards controlling hemoglobinopathies and serves as a model for other genetic diseases.

In Oman, a targeted and sympathetic approach within specific tribes proved to be more effective than total population screening for blood disorders. The approach was initiated by diagnosing affected individuals and tracing the disorders through the extended family and tribe, since the tribe is a genetic as well as social entity. Since pre-natal diagnosis is not available, therefore other measures such as health education, carrier screening, and pre-marital counseling has been explored in order to reduce the frequency of affected births. Carrier screening among high risk populations prior to marriage, coupled with genetic counseling has the power to be highly effective in preventing the conception of babies with genetic anomalies.

Pre-Marital Counseling

Premarital counseling was established in Oman 3 years ago with more than 2,000 couples counseled. The majority of counseling deals with hemoglobinopathis (Sickle cell anemia and Bet-thalassemia) since there is a national program for the control of genetic blood disorders.

There are now teams working in all regions of Oman consisting of 2 doctors, nurse and health educator in each team. Teams were trained to perform health education and counseling for hemoglobin disorders. Recently we trained primary health workers to counsel for hemoglobin disorders and currently introducing counseling into school health by training school doctors. There has been an excellent response from young persons, who undergo voluntary premarital counseling in growing numbers each year. Most of them are from educated families of the community who have
children with Beta-thalassemia are interested to screen all children in order to detect the carriers in their family and to avoid future marriages between carriers.

Recently there is more demand on counseling from couples who had children with various other genetic diseases since Omani couples are eager to learn why genetic diseases occur and how to avoid genetic diseases.

With the help of genetic counseling and health education, it is possible to bring an understanding of genetic diseases to the community. There is no doubt that offering premarital counseling is a helpful tool for the avoidance of genetic disorders. It would be unlikely that marriage will be arranged between two individuals who are both known to be carriers of the genetic disease, especially in a family which has already experienced the hardship of the genetic disease.

However, it is possible to avoid or to control genetic diseases in the populations. A model example comes from the successful experience in Cyprus where B-thalassemia, once a common disease, has now been completely eradicated.

References:

Abel, Ernest L. Arab Genetic Disorders: A Layman’s Guide. Jefferson, NC: McFarland, 2003.

Al-Lamki, Z. & El-Banna, N. "Guidelines for the Management of Thalassemia," presented at the 12th Child Health Symposium, March 1999.

Al-Lamki, Z. & El-Banna N. "Thalassemia in Oman, can complications be prevented?" presented at the 1st Child Health Symposium in Oman, April 1983.

Al-Ryami, AA. "National Genetic Blood Disorders Survey," presented at the 12th Child Health Symposium, March 1999.

Bittles A. The Role and Significance of Consanguinity as a Demographic Variable. Population and Development Review 1994; 20(3): 561-584

Baysal, E. "Hemoglobinopathies in the UAE," Hemoglobin, 2001, 25: 247-253.

El-Hazmi MAF, Al-Swailem AR, Warsy AM, Sulaimani R, Al-Meshari AA. "Consanguinity among the Saudi Arabian population,". Journal of Medical Genetics, 1995, 32: 623-626.

M.A.F. El-Hazmi (1992). "Genetic diseases in Arabia - a model for national awareness and care program," Saudi Med J, 13:514-520.

M.A.F. El-Hazmi (1994). "Care for people with hemoglobin disorders," World Health Forum, 15:565-568.

M.A.F. El-Hazmi & A.S. Warsy (1997). "Haemoglobinopathies in Arab countries," In Genetic Disorders Among Arab Populations (Eds. A.S. Teebi & TI. Farag), NY: Oxford University Press; 83-110.

Hamamy, H. "Consanguineous marriages in the Arab World," The Ambassadors Magazine - Selected Studies, 2003, Volume 6, Issue 2. http://www.ambassadors.net/archives/issue14/selected_studies3.htm

Harper, PS. Practical Genetic Counseling. Oxford: Butterworth Heinemann, 1998.

Hathout, H. "Islamic Views on some reproductive issues," in A.S. Teebi & T.I.Farag (eds.) Genetic Disorders Among Arab Populations. NY: Oxford University Press, 1997. Pp. 469-473.

McKusick, VA. Mendelian Inheritance in Man. Baltimore: Johns Hopkins University Press, 1998.

Quaife, R., Al-Gazali, L., Abbes, S. et al. "The spectrum of beta thalassemia mutations in the UAE national population," Journal of Medical Genetics, 1994, 31: 59-61.

Rajab A, Patton M. (1997) Major factors determining frequencies of Haemoglobinopathies in Oman. American Journal of Medical Genetics; 71:240-242.

Rajab A, Patton M. A. "Analysis of the Population Structure in Oman," Community Genetics, 1999, 2: 23-25

Rajab A, Patton M. A study of Consanguinity in the Sultanate of Oman. Difficulties in accurate measurements of Inbreeding. Annals of Hum Biology, 2000: 1-5..

Rajab A, Patton M, Modell M . The development and use of a National Haemoglobinopathy Register in Oman," Community Genetics, 1999: 47-48.

Rajab A, Patton M, Modell B. The development of a Genetic Register using Tribal information in Oman. (in preparation)

A.S. Teebi & T.I. Farag (eds.). Genetic Disorders Among Arab Populations. NY: Oxford Univ. Press, 1997.

Dr. Anna Rajab, MBBCH (Kiev), DCH (Dublin), MRCP, PhD (London), is the founder of genetic services in the Sultanate of Oman. She completed her post-graduate studies in clinical genetics in St. George's Hospital Medical School, London in 1997 after 26 years of experience in obstetrics, internal medicine, neonatology, general pediatrics, and clinical genetics. Her email is drarajab@omantel.net.om

Related Links:

The Ambassadors Research Foundation had presented Prof. Mohsen El-Hazmi (Saudi Arabia) in the MEGASTARS section (Vol.3, Issue 2 - July 2000) for his major contribution as a regional educator in the Arab World, particularly in the Gulf region on counseling of genetic blood diseases. Readers are advised to visit this article in the archives section (www.ambassadors.net/archives). In the next issue, The Ambassadors Magazine will publish an article by Prof. El-Hazmi on consanguinity and genetic blood diseases.