For Rare Disease Awareness Day, two genetic counselors with rare genetic conditions have one request: Please stop asking genetic counselors with disabilities if we are comfortable counseling patients with our own diagnoses.

There is one question every genetic counselor gets asked during a job or graduate program interview: “How did you hear about genetic counseling?” If you are a genetic counselor with a genetic condition, there is a second question that creeps its way into every interview: “Would you be able to counsel patients with your diagnosis?”

One of the most difficult parts about being asked this question repeatedly is that there is an expected answer: “No.” The expectation in our field is that a genetic counselor with a genetic condition or a disability cannot objectively counsel about their own condition. There are unfounded assumptions that a Disabled genetic counselor will experience countertransference and that patients will likely feel uncomfortable, especially if a shared diagnosis is visible. Most often, the question asked is along the lines of, “Are you able to counsel a patient who is considering terminating a pregnancy with your condition?” Sometimes, either implicitly or explicitly, genetic counselors with visible disabilities or genetic diagnoses are told we should avoid working in prenatal roles altogether.

But why do individuals in positions of power feel entitled to ask such invasive questions? Genetic counselors who have children are not asked if they are capable of remaining objective when working in pediatrics. Genetic counselors are not asked about their history of pregnancy loss and whether it impacts their ability to impartially counsel individuals considering termination. In fact, many genetic counselors find their way to the profession due to a personal or family connection, and this is often viewed as an incredible asset.

It is not uncommon for an oncology genetic counselor to enter the profession due to a personal or family history of cancer. Most rare disease organizations are founded and run by parents of individuals with genetic diagnoses, and we applaud their achievement for turning a personal experience into an impactful organization. Why does it feel different to have Disabled individuals working in medicine, and why is it standard fare to question their abilities and intent? Instead of generating barriers based on hypotheticals, the genetics community would benefit from seeking the expertise of Disabled providers with lived experiences. Unfortunately for many, it feels like a constant uphill battle as we fight to demonstrate our value within the field. 

Genetic counselors are trained to be self-aware, to be mindful of countertransference and to remain non-directive regarding a patient’s decisions about their body and their family. Yet, ableism rears its ugly head with these types of questions. Often asked with “good intentions,” these questions and the assumptions beneath them have the potential to cause lasting harm to Disabled genetic counselors and the profession overall. Experiences of Disabled genetic counselors are an asset, not a liability. As a profession, we do not need to distance ourselves from disabled bodies and identities. Implying or directly telling genetic counselors with visible disabilities that they do not have a place in certain spaces of the profession likens back to America’s Ugly Laws where disabled bodies should be hidden away and not “imposed” onto others with our mere presence. It is time to trust that a Disabled genetic counselor is in fact capable of counseling in whatever setting they choose.

So on this Rare Disease Day, as two of the only 41 GCs who reported having a genetic diagnosis on the last PSS we ask you — please never ask these types of questions again. Take a moment and reflect on why we view the disabled body so differently, trust that Disabled genetic counselors are able to make choices about their own career paths based on their personal and professional interests and experiences, and ask yourself what you can do to address the ingrained ableist biases in your graduate program and/or workplace.

Note: The authors deliberately chose to capitalize the “D” in “Disabled” genetic counselor to signify identity-first language, inclusive of a shared identity and community of genetic counselors with disabilities.

Header photo by Alex Shute on Unsplash.