Genetic Counseling in Jordan

by Linda Steinmark

On January 28, Nadeen Jaradat and Rifaat Rawashdeh gave a presentation in the Human Genetics department about the nascent program in genetic counseling in Irbid, Jordan. It is a very modern, welcoming society with a young, well-educated population. There is excellent medical care, adequate insurance and a large investment in biotechnology. What is needed is a way to bring it all together. Dr. Saeid Jaradat, Ph.D. Director of the Biotechnology Center, first approached the Sarah Lawrence program, asking for collaboration in this project.

So last year, Caroline Lieber and Siobhan Dolan packed their bags and were given an exhilarating whirlwind tour of the country, its universities and biotech centers. As Nadeen and Rifaat showed us slides of historical sites and places of natural beauty, we could envision ourselves along for trip. Culturally, consanguinous marriages are favored on Jordan, especially with cousins on one’s father’s side. Because of this, there are higher rates than expected of hemoglobinopathies, G6PD deficiency, familial Mediterranean fever, neuromuscular disorders and birth defects in general.

While better education, especially for women, has decreased the rate of consanguineous marriages, it is still a common practice in the rural areas Heath care is a priority for the Jordanian government. While there is no universal healthcare system, insurance and services are provided through the military and civilian health ministries for over half the population. Others have employer-based and private insurance plans, and the UN Relief Works Agency provides care for the many refugees in the country.

Infant mortality rate has been reduced from 216/1000 in the 1950’s to 22/1000 now. Salt is iodized and folic acid has been introduced into flour and other foods. The Ministry of Health established premarital screening for thalassemia carriers. Ultrasound is available for all pregnant women. There are molecular and cytogenetic labs, obstetricians routinely perform CVS and amniocentesis and private hospitals offer PGD and IVF. While the current labs mainly focus on newborn diagnosis, they have the ability to participate in prenatal care as well.

Psychosocial issues clinicians in Jordan encounter include the stigma that carriers of these diseases face, blame of the mother for birth defects (sometimes attributed to breastfeeding) and the correlation of number of sons with social status for women. Pregnancy termination, while rare, is allowed under Islamic law prior to 16 weeks gestation, at which time the soul is believed to enter the body. As more prenatal services become available, genetic counseling will become more important as women balance personal and religious beliefs.

As part of a continuing collaboration between Sarah Lawrence College and Jordan, two students will spend the summer in Irbid helping to develop the genetic counseling program. They are Monique Simard and Jasmine Wong. It will be a wonderful opportunity for them to experience a part of the world where many of us have never been, though we’ve heard so much. Playing a role in the new genetic counseling program there, guided by two wonderfully warm and friendly students such as Nadeen and Rifaat, promises to be an awesome experience.