Thursday, September 7, 2023
This ABGC Spotlight features Rawan Awwad, MS, CGC, a genetic counselor who has made a significant impact overcoming obstacles and embracing opportunities along the way. With over 17 years of experience in reproductive and pediatric genetics, Rawan's expertise is truly laudable, but her journey was shaped by twists, turns and, ultimately, her unwavering love for genetics. Today, she is a genetic counseling director at the Fairfax EggBank, and she has made a major contribution to the field through her work as co-founder and president of the Arab Society of Genetic Counselors (ASGC). Driven by a deep-rooted commitment to improving access to genetic services for Middle Eastern and Arab patients globally, Rawan’s culturally sensitive approach and dedication to her patients has made a difference in the lives of many.
Read on to explore Rawan's experiences in clinical and industry settings, her contributions to the genetic counseling community and her dedication to empowering patients through compassionate and informed care.
Can you tell us about your background and how you became interested in genetic counseling?
I’m originally Palestinian from the city of Ramallah. I moved to the United States at the age of 18 to pursue a higher education. I majored in biology and minored in psychology and really wanted a career that would combine the two, but I didn’t know what that would be. I stumbled upon genetic counseling in my search and knew immediately that it would be a fitting career for me. However, as an international student at the time, I did not have all the resources I needed to consider that path. It was not feasible to take out a student loan, and visa status was a challenge. I ended up applying for a PhD program in genome science and technology, hoping to do research in behavioral genetics.
Like several other GC stories I hear, I felt there was something else for me beyond bench work and scientific rigor. Even after passing all my preliminary exams and becoming a PhD candidate, I felt stuck and uninspired, as if something was missing. I decided to graduate with a master’s degree and moved home to Palestine to be with my family. I worked in a research lab until I stumbled upon a weeklong course in genetic counseling offered by the European School of Genetic Medicine. I loved every lecture! It became clear that I needed to tackle all obstacles and find a way to combine my love for the ever-evolving field of genetics/genomics with patient counseling. In 2004, I got into a U.S.-based program that provided me with the support I needed. I am grateful every day that I have a career I love.
You have provided genetic counseling in the U.S. and in Palestine. How did you learn to adapt?
When I moved back to Palestine to work in 2008, genetic counseling services didn’t exist in the area. In fact, they remain largely unavailable to Palestinians in the West Bank and Gaza Strip. The only option I had was to create a position for myself. I volunteered for over a year with a few geneticists at one of the largest Israeli hospitals in the area. I also applied for and passed the Israeli board exam, which granted me a license to practice in Jerusalem. I was ultimately able to secure a part-time job. Due to the political situation and restrictions on Palestinians’ movement between cities, I had to think outside the box. I traveled to patients’ homes for consultations. I transported samples between cities for genetic testing to be coordinated. It was the most chaotic yet rewarding experience I’ve had to date. I still remember many of my patients from that time. My favorite counseling session was using a chalkboard at someone’s house to explain mitochondrial disease. There were several kids in that session smiling at me with amusement.
The biggest similarity in practice between the U.S. and Palestine was the patients’ reactions to the education they received. It turns out that our counseling skills are universal and can be successfully applied when the approach is patient centered. Taking into consideration the local culture is important for building a successful patient-counselor relationship. Wherever I practice, I notice that most patients enter a counseling session with a certain degree of hesitation and/or skepticism, and with little to no fail, they typically leave feeling informed and heard. I absolutely love witnessing their transformation.
In terms of differences in practice, there were several. I found the scope of practice of a genetic counselor in the U.S. to have more autonomy. There were also differences in pay scales and growth opportunities. The most striking difference that I noticed, however, was the approach to ethical issues in clinical care and genetic testing. Things that I thought would be of major ethical concern were not viewed in the same light. There is more of a directive approach to clinical care in the Middle East, which may even be favored by patients. I had to adapt to a style of practice that was the most useful to the local population, but still interject my viewpoint and standards of practice. I learned to advocate for patients where and when needed. Discussing cases with other genetic counselors from around the world was my safety net, and I appreciated the platform that the National Society of Genetic Counselors (NSGC) provided us to make these connections.
Tell us about your career path. What made you transition from clinical GC to working in an industry setting?
The first 7 years of my career were spent in clinical, in-person settings doing primarily reproductive and pediatric genetic counseling. They were crucial in developing core clinical skills and learning how to work in healthcare teams. The remainder of my career has been spent in industry roles, either providing patient consultations, clinician support, clinical liaison work, preimplantation genetic testing (PGT) case management, donor-recipient case management, and/or serving as the genetic expert in various projects.
The transition to industry was coincidental yet transformative in that it allowed me a work-life balance that I was craving as a new mother. It was during my in-person clinical position as a pediatric GC in Detroit when I was approached by a known genetic testing lab to see if I would be willing to work as a contractor for their newly established genetic counseling service. This was back in 2012 when such services were just being established in the industry. I was curious to try it as a secondary position. Fast forward to when I had my first baby in 2013, and I had no idea I would feel so attached to her. The option of a part-time role at my clinical job wasn’t available so my lab contract role became my only position at that time. It allowed me to stay home with my baby during the day, and work evenings when my husband returned from work. Although I miss being with, and learning from, all the brilliant doctors and nurses I worked with, remote work has gifted me time with my children. I have now been working remotely for 11 years, doing a combination of industry and clinical work.
Seeing how influential GCs are in shaping and managing genetic testing products in the industry allowed me to gain a new perspective for how we can be involved in patient care. My view on genetic counseling practice evolved from thinking it’s exactly what I learned in school during my clinical rotations to realizing that the skills I gained can be transferable to serve in various scopes of practice. Also, genetic testing products have increased in number and complexity since I graduated in 2006. The way information was conveyed to patients in my one-on-one sessions needed to shift from detailed explanations of various concepts to distilling the most pertinent details to fit the patient’s needs and attention span. I find that contracting, noting client cues, observing patterns or inconsistencies in discussions with clients, handling situations with empathy and using techniques such as reflection and confrontation, among other counseling skills, have allowed me the same success in both clinical and industry settings.
You have been involved in developing an organization for Arab Society of Genetic Counselors (ASGC). What was the impetus for developing this organization?
The ASGC was born out of a desire to make a difference in the lives of Arab patients who are either underserved or not served to the maximum potential due to cultural barriers, political turmoil, or lack of services. The idea crystallized during a casual phone conversation I had with a Lebanese genetic counselor living in California. We both worked briefly in our home countries and observed the dire need for our services there. However, we were not able to continue our services long distance after returning to the United States despite trying. Through word of mouth, we recruited other Arab GCs to gauge interest, and were pleasantly surprised by the number of GCs who were yearning to connect for similar reasons. Over a period of three years, we went from a casual group of like-minded GCs to becoming a registered non-profit corporation with tax exempt status. The GCs who have been serving with me at the ASGC have become more like family. We endured a lot of ups and downs but stuck together through all of it. You can learn more about the ASGC at www.asgcsociety.org
The ASGC creates resources, raises awareness, and encourages networking and collaborations among genetic professionals in order to extend quality genetic services to Arab patients globally. The goals of the ASGC are to:
- Extend genetic counseling services to underserved Arab populations by making available a growing registry of genetic counselors who are Arabic speaking and/or currently based in Arab countries.
- Provide education to Arab patients on indications for seeking genetic services in order to reduce healthcare disparities.
- Advocate for Arab patients among clinicians by raising awareness on their unique cultural, religious, and social characteristics.
- Support genetic counselors and other genetic professionals who are serving Arab Patients by creating resources and networking opportunities.
- Elevate the status of genetic counseling practice in the Middle East and North Africa.
The ASGC is headquartered in Michigan, United States, and has membership and participation from around the world. Membership is free and is open to all GCs, other genetic professionals, and students who are interested in the ASGC mission and goals. We welcome ideas, discussions, and volunteers.
How do you stay up to date with the latest research and developments in the field, and what resources do you find most helpful for this?
Other than skimming through new publications and attending national conferences, I find that professional groups specialized in PGT and gamete donation to be incredibly helpful. I’m part of the ASRM Genetic Counselors Professional Group and the NSGC ART/Infertility SIG. I am also part of a closed scientific group that discusses current PGT-A literature, as well as a recently formed Donor Gamete GC group. All of these groups have been valuable at creating space to discuss very specific topics relevant to my work. I find the discussions we have to be engaging and highly enlightening. They keep me thinking and researching and never stagnant. They also allow me to network with like-minded individuals which has greatly advanced my career.
There have been times when specific resources needed to do my job were not available, such as expert opinion pieces or national guidelines on certain topics. For a couple of these situations, my network of GCs and I got together and created them for ourselves. We thought that creating them would allow consistency in practice but also highlight that genetic counselors can become experts in subspecialties of genetics. One of these resources is the recently published ASRM Committee Opinion on the Indications and Management of PGT-M which was largely needed. There is also another resource we’re working on that will shed light on the management of medical updates in third-party reproduction.
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