The path that led me to genetic counseling was not remarkable. Like many others before me, I had left my lab coat, pipettes and dream of curing cancer behind to pursue a career that promised human connection and a feeling of actually “doing something” to help families facing daunting diagnoses. I excelled in graduate school and envisioned a job in one of the clinics I had rotated through as a student. But as my final semester began, it became clear that this plan was not going to work out. I was rejected (or, in most cases, never heard back) from every clinical position I applied to. 

Finally, a few weeks after graduation, I received my first and only job offer: a position on the patient engagement team at the Friedreich’s Ataxia Research Alliance (FARA), a nonprofit dedicated to advancing treatments for Friedreich’s ataxia. I was skeptical of accepting. Could I even call myself a genetic counselor if that wasn’t my title at work? Would I be wasting my graduate training — that I had gone into major debt to pay for — by accepting a nonclinical position? Financial and health concerns pushed me toward taking the job. I was quickly approaching the expiration of my student health insurance and the start of my loan payments. I needed an income and health benefits. Tipping the scales even further, FARA’s CEO is a genetic counselor. I trusted her when she said the skills I developed during my training would be put to good use at FARA. I accepted the position. Although a nontraditional advocacy role wasn’t part of the post-grad life I dreamed for myself, I am grateful that life’s path led me here. 

More than two years post-graduation, I continue to lead FARA’s patient engagement team as we provide education to the Friedreich’s ataxia community, work with pharmaceutical companies to support patient-centered clinical trials, and advocate with government and regulatory stakeholders to advance rare disease research. My role at FARA has also allowed me to advocate for the genetic counseling profession in several discussions with clinicians, patients and representatives from the nonprofit, health insurance and pharmaceutical industries. One of these discussions resulted in a published white paper on policy solutions to decrease barriers to diagnosis and appropriate health care for the rare disease community. My perspective as the only genetic counselor in that discussion led to the inclusion of the Access to Genetic Counselors Services Act in the white paper. 

While I found my role at FARA incredibly fulfilling and engaging from the start, in the beginning months I was still plagued by an ambiguous sense of failure. Even though I had passed the board exam and was utilizing both my genetics expertise and my psychosocial skills in my role, I worried that working outside a clinic meant I wasn’t really a genetic counselor. This feeling was heightened when I attended my first conference after graduation and felt like an outsider in a space dominated by clinical counselors. Back then, the phrase “nontraditional role” that was frequently used by experienced genetic counselors felt like a polite placeholder for “not a real genetic counseling job.” 

Looking back, it’s ironic that I was having those feelings of doubt. I have never been one to blindly agree with the status quo. In fact, I was partially drawn to this field because of the potential to help address health inequities, sexism, racism, ableism and other prejudices embedded in our health care system because of centuries of “tradition.” But doing something different, becoming “nontraditional,” is always going to be difficult, no matter what you think you stand for. I’ve understood from the start that my work at FARA is important to the patient community, but it took me some time to find confidence and pride in what I do as a member of the genetic counseling community.

Joining a group called Genetic Community Genetic Counselors: Leaders in Community Support (GC-GC LINCS), an alliance of genetic counselors who work in advocacy roles, helped me understand that my position is not as rare as I once thought. The group exemplifies the huge diversity of roles genetic counselors can fill. While I focus on patient education and building relationships with pharmaceutical companies at FARA, at other organizations, GCs manage patient registries and sponsored genetic testing programs, lead patient support groups and clinician networks, conduct research, and advance newborn screening efforts. We all work with patient communities and other stakeholders on various initiatives: Some focus on enhancing research efforts to identify disease mechanisms and potential treatments, some on improving access to health care, and some on supporting the daily lives of individuals with disabilities and chronic conditions.

The 2024 the NSGC Professional Status Survey recorded that 3% of GCs worked for nonprofits, including 5% of 2023 graduates. This likely highlights the challenging job market new graduates have faced, with several successfully finding or creating positions in the advocacy space. As the genetic counseling field continues to grow and the availability of clinical positions fluctuates, more genetic counselors may find themselves in advocacy or other nontraditional roles. Although the path that brought me to FARA wasn’t straightforward, I feel lucky to have chosen this role. For me, there’s something uniquely special about working for an organization and with a patient community that is driven by the hope and determination that one day we will cure Friedreich’s ataxia. It’s my hope that more genetic counselors will begin entering the advocacy space to experience the power of patient-focused, mission-driven work themselves.

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