Genetic counselors: the heroes behind closed curtains

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Would you like the opportunity to explore your genetic predispositions? Genetic testing can be empowering, helping you to make informed decisions about your healthcare. But using DNA analysis to diagnose and predict certain health conditions calls for trained genetic professionals to explain complex results, answer lingering questions and provide emotional support to people, especially when they’re receiving unexpected news. Genetic counselors are an important link in this chain, but their crucial healthcare role is yet to be recognized in Belgium.

What is a genetic counselor? 

Imagine a patient with a family history of a genetic condition. After years of struggling with worries and doubts, they are about to call a genetic center but are faced with the reality that receiving their results will not be the end of the story. Firstly, what do the results really mean? What are the next steps? Do they have to take preventive measures for themselves or future children? A genetic counselor is here to guide and support patients in making informed decisions. They provide support on various topics, including pregnancy or family planning, family history of genetic disorders, personal health concerns, cancer risk assessment, and more. 

Bridging science, psychology, and healthcare, this profession requires specialized training in both medical genetics and psychosocial counseling. “Every patient will react differently, even if their genetic results are similar,” explains Virginie Szymczak, genetic counselor at University Hospital Ghent, and board member and co-chair of the genetic counselors of the Belgian Society for Human Genetics (BeSHG). As a counselor you need to know how you will react when someone is crying or yelling at you after receiving sensitive or unfortunate news. You cannot learn that from books alone.” Proper training is therefore essential. 

Chocolate, waffles, and genetics 

Belgium is well known for its high-quality genetic research and services. Its national program for prenatal and newborn screening, and in vitro fertilization (IVF) are internationally recognized, with Belgian hospitals attracting people from around the globe. With its well-developed healthcare system, people can widely benefit from these services.  

The Belgian Centers for Human Genetics offer a reproductive genetic carrier screening test (BeGECS) for couples which screens for heterozygous variants associated with homozygous diseases. More and more health insurance companies provide a compensation for this test, creating a growing demand for genetic tests and services which in turn calls for more genetic counselors to support patients.  

Officially unofficial 

Despite the growing need for genetic counselors, the profession is currently not officially recognized in Belgium. In theory, anyone could work as a genetic counselor. However, to be recognized by the European Board of Medical Genetics (EBMG) – a legal entity safeguarding patients’ needs regarding genetic services in Europe – you must complete an exhaustive training program.  

One of the criteria is to obtain a master’s degree in genetic counseling. Since there are currently no programs for this in Belgium, you need to obtain it abroad. “It’s very difficult to obtain this license,” highlights Szymczak. “And every five years, you need to renew your registration. Only seven out of the thirty-one counselors in Belgium have obtained this recognition, of which I was the second one.” 

This recognition is important to ensure patients receive good quality of care in the rapidly evolving field of genetics. However, the problem in Belgium is that even after going through years of hard work to obtain the EBGM recognition, qualified genetic counselors are still not officially recognized. Szymczak emphasizes: “It’s not even easy to be officially appointed as a genetic counselor in your own hospital. Some receive this recognition and are given the designation ‘genetic counselor’ on their nametag. In my institution that’s not the case.” 

Various bodies in Belgium do underline the importance of specialized training and recognition of the profession. The Federal Knowledge Center for Health Care Expertise already underscored its importance in 2007. Furthermore, an in-depth citizens’ forum on the use of genomic data organized by the King Baudouin Foundation and Sciensano identified it as one of the five top priorities. So, what is preventing the government from taking action? 

The hurdles to overcome 

The reasons for the lack of recognition are complex, but essentially boil down to the newness of the profession and various regulatory challenges. Genetic counseling is a fairly recent addition to healthcare, which is why many other countries also struggle with integrating it in their healthcare systems. Barriers for EU member states include the limited knowledge of genetics among patients and non-genetic health professionals, insufficient workforce capacity, and lack of insurance reimbursement. Additionally, officially recognizing a new profession means changing the law, which is particularly complicated in Belgium due to its complex governmental structure with rights and obligations per region (Flanders, Wallonia, Brussels), and language community (Dutch-, French-, and German-speaking).  

Nevertheless, some countries such as the United Kingdom have been able to establish strong frameworks for genetic counseling. Together with the resources and support from the EBMG, they can offer an example for Belgium to develop its own recognized education and regulatory standards.  

The value of recognition 

Although difficult, the recognition of the profession would be beneficial to patients, healthcare providers and the healthcare system. 

Firstly, Szymczak highlights that patients would gain better access to genetic counseling services. A better understanding of the profession among doctors would result in improved referral pathways and collaborations between genetic counselors and non-genetic health professionals. 

Secondly, she emphasizes that a recognized training program with more flexible admission criteria and a manageable study career could attract more students to the field, resulting in more genetic counselors to meet the growing demand for genetic services, shorten waiting times for patients and balance the workload for counselors. 

Lastly, genetic counselors would be associated with the national institute for health insurance allowing their access to the healthcare network and facilitating the billing and reimbursement process. “It is hard to work within a healthcare system that doesn’t really recognize our existence,” indicates Szymczak. 

The only way is forward 

The BeSHG and the eight Belgian Centers for Human Genetics are actively advocating for the recognition of the profession and the establishment of a formal training program. A two-year postgraduate program in Genetic Counseling is already running at the University of Ghent and representatives from the eight genetic centers have developed the blueprint for a two-year master program that is currently waiting for approval. “The demand for genetic counselors is going up. We have to do something to safeguard the quality of our services” emphasizes Szymczak. Meanwhile, the working group of genetic counselors within the BeSHG continue to raise awareness by networking, writing articles, creating scientific posters, and participating in annual meetings, all while remaining dedicated to their patients. “I always know when my day will start, but I never know when it is going to end. If a patient needs me, I’m there,” affirms Szymczak.