Expanding Our Borders
A Summer Experience in Jordan
Last year two students from Jordan, Nadeen Jaradat and Rifaat Rawadesh, were accepted into the Sarah Lawrence College (SLC) Genetic Counseling Program. In the first term they made a presentation on their country in hopes that two fellow students would assist in assessing the possibility of introducing a genetic service in Jordan. Monique Simard and I quickly jumped aboard since we were avid travelers and interested in participating in this research and clinical opportunity.
Such a great opportunity came with a great deal of work; from late winter to early summer, we found ourselves very busy planning and coordinating the project. First we formed a task group that would meet every month: Team Jordan. It was composed of Caroline Lieber (SLC Genetic Counseling Program Director), Dr. Siobhan Dolan (a public health specialist and instructor at SLC), Nadeen, Rifaat, Monique and myself, Jasmine Wong. Next, we began formulating our theses which, after many revisions, we decided to combine. Monique focused on surveying the population of Jordan and look at its attitudes, knowledge and resources on three common genetic diseases: Beta-Thalassemia, Cystic Fibrosis and Down Syndrome. Complimenting Monique’s part, I surveyed Jordanian physicians along similar measures. By combining our projects would allow for a well rounded needs assessment and a guideline for future genetic counselors in Jordan.
To begin, we researched the Jordanian medical system, culture, and law. Jordan is a developing country, strong in Muslim religion and Arabic family tradition, and bordering the politically restless countries of Syria, Israel and Iraq. It is also well known for its seventh new wonder of the world, Petra. Jordan currently does not have geneticists or genetic counselors. Genetic counseling is currently done by physicians. Dr. Saied Jaradat, the Director of Molecular Genetics at the King Abdullah Hospital in Irbid and our supervisor in Jordan, noticed that Jordan may benefit from genetic services. High consanguinity rates, traditional large families and anti-abortion laws bring a higher genetic disease rate to the country.
In 2004, Jordan started pre-marital screening for beta-thalassemia. Northern Jordan will launch newborn screening next year; the country is quickly developing its health care system. We aimed to study these considerations during our time in Jordan. On July 27th, I took a plane from JFK to Amman airport. Monique arrived ten days later. The culture shock was immediate: from stray camels roaming the streets, to Bedouins and Gypsies selling their wares. By the end of the third week, I had adjusted to some of the cultural differences, such as sexual segregation and the practice of polygamy. I learned that I could shake a man’s hand only if he put his out first and found that introducing myself as a Canadian studying at an American school was best received.
Once we felt more comfortable with Jordanian customs, social etiquette, and medical practices we took part in genetic counseling sessions. For example, almost all Jordanians we met believed that a greater power gives them trying situations that they can endure. For some, genetic explanations for these trials were thought of as being discrepant with their beliefs. For others, it did not present a challenge to their faith. all types of patients. Because of this, we learned to ask each family if they were interested in hearing about the inheritance of their family’s disease and respected their choice. We found that this approach was well received by Another adjustment to counseling style was necessary since abortion is illegal in Jordan and therefore never available and never discussed medically.
We focused, therefore, on exploring the options that were available and found this challenging and interesting to alter our counseling styles to accommodate this and other such different cultural, political and legal norms. I found that adjustments were made easier by an understanding of Jordanian culture. To illustrate, traditionally it is the parents that choose their children’s spouses. If a public goal was to lower the number of consanguineous marriages, the parents are the proper individuals to educate. In clinic, most of our patients had autosomal recessive disorders and were from consanguineous marriages. I counseled the parents by respecting and discussing the pros of consanguinity—financial stability, decreased risk of assault on women and tradition. I also taught them how consanguinity can increase the risk of inherited disorders. With this information, presented in a balanced manner, they were better equipped to make informed choices for their children.
I would like to end this article by sharing the inspiring story of a Bedouin woman I met. Dr. Saied found a way for us to speak with a Bedouin community in the county of Mafraq. The little I had known about Bedouin people was gained from a few National Geographic images of weathered, bronzed women in colorful wool costumes. They are a nomadic group who live symbiotically with their camels and other animals. With simple expectations, we went to Mafraq. The county was poor, with a lone intersection of stores and tents scattered every 20 miles. In a narrow corridor outside one of these intersections was a small women’s community centre. We met the founder of the center and marveled at her story. She married at the age of 14 (a typical age for Bedouin girls) and had seven children. In her twenties, she had a pivotal moment and went on to complete her PhD, while having four more children.
But she still was not satisfied; after a man donated 100 Jordanian Dinars (140 USD) to her, she started a women’s center, which is now filled with exercise machines, a beauty parlor, an arts and crafts center, computers and a kitchen. Workshops run weekly on anything from blanket making, basket weaving, interviewing, internet surfing, nutrition, typing and hairstyling. It is available to some eighty families in the surrounding area, which she told us had a variety of rare genetic diseases because of a high consanguinity rate. She explained that the consanguinity rate was perpetuated by the family stigma of genetic disease, which inhibited members from marrying outside their family. Likewise, children with these diseases were hidden. She shared that she is currently working with a social worker to aid these families. Together we brainstormed ideas for other ways to help the families in this community and decided that we would provide workshops on consanguinity. We are currently working with a Jordanian molecular genetics masters’ graduate to coordinate and execute this outreach project. This experience that we were lucky enough to have had could not have been prepared for in research and readings. Much can and was learned from first hand experience in a culture so different from our own. There is a want and a need for medical genetic services in countries around the world that are awaiting a 'first step.'