Genetic Counseling in Jordan

In December of 2009, Princess Haya Biotechnology Center (PHBC) started to provide genetic counseling services for patients and their families in Jordan. Due to the high rate of consanguineous marriages and high incidence of autosomal recessive disorders seen in clinics, services have been provided for pediatric patients and their families. In addition, PHBC started to offer enzyme assay as well as metabolic screening tests for detection of plasma amino acids, urine organic acids, carnitine and acyl carnitine profile in parallel with genetic testing for some inborn metabolic diseases. PHBC also launched a newborn screening program that will start its' services soon in which genetic counseling will be a part of this program.

The genetic counseling unit runs a pediatric clinic on Wednesdays, and provides a one on one counseling on other days. This clinic is run by Dr. Ali Al- Hawamdeh, MD, FRCP, MRCP (UK), a consultant in pediatric, genetics, and metabolic diseases, and Nadeen Jaradat, M.S, a genetic counselor who earned her Master's degree in genetic counseling from Sarah Lawrence College, USA in 2009, and is a member of the National Society of Genetic Counselors (NSGC).

At present, the genetic counseling unit is expanding its' services to provide in-patients genetic consultations for King Abdullah University Hospital (KAUH) patients. This service sees patients for diagnosis, counseling, or management of genetic and/or metabolic disease at the request of the attending physicians in the hospital. Seminars are held to hospital pediatrics residents in order to explain the role of genetic counselor as a member of the healthcare team.

In aim to introduce their services to other health care institutes, PHBC provided a cost free genetic counseling services for the first month. In the near future, PHBC plans to co-operate with King Hussein Cancer Center (KHCC) to provide genetic testing and counseling to patients with breast and ovarian cancer.

As of January of 2010, the genetic counseling clinic has seen more than 37 patients, including; two with adult disorders involving Marfan syndrome and Spinocerebellar ataxia type 6, three pre-marital counseling cases and 32 pediatric patients diagnosed with different disorders such as: Familial Mediterranean Fever (FMF), Osteogenesis Imperfecta (OI), Mucopolysaccharidosis types I, II, III, Gaucher disease, Pompe disease, Ellis Van Creveld (EVC), Spinal Muscular Atrophy (SMA), Wilson's disease, and other syndromes, diseases and disorders. In addition, the clinic provided 11 inpatient consultations for KAUH pediatric residents and two out of country consultations.

To educate the public, the PHBC genetic counselor is compiling brochures in Arabic language on various inherited disorders of concern; especially those that are diagnosed in house by PHBC Molecular Genetics Laboratories. Brochures answer frequently asked questions about the disease, diagnosis, mode of inheritance, and availability of therapies.

In order to interact with patients' community and provide support to their families, PHBC is preparing an open day for patients with Gaucher disease to entertain them, provide a group genetic counseling, and distribute brochures that contain information about Gaucher disease.

Since 2004, PHBC has grown rapidly from a small start up to a diversified center with more than 66 employees. PHBC is the initiative to integrate genetic counseling in healthcare system in Jordan. This step demonstrates the commitment of the country officially in providing better health care to its population.

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Genetic Counseling in Jordan
by Linda Steinmark

from the Spring 2008 issue of the Human Genetics Program's Gene Scene newsletter