As genetic counselors, we take pride in offering equitable, empathetic and informed care. We’re taught to approach our patients without judgment, be nondirective and center our patients' lived experiences. But in our pursuit of developing our professional excellence, are we taking enough time to examine the biases we carry? Especially when it comes to those related to disability?

There’s a disconnect I’ve noticed which lingers in my mind as I near graduation and gear up to enter the workforce, one that feels both uncomfortable and urgent: the tendency for genetic counselors to publicly advocate for people with disabilities while privately holding ableist views and values. It’s one thing to support disability inclusion in front of colleagues and supervisors. It’s another to carry those values into our personal lives — into the spaces where no one is watching. How do we act in a space where no one will call us out?

This disconnect matters because if we are serious about inclusion, diversity and equity, we cannot just perform allyship only when it’s convenient or professionally beneficial. 

The following story is an example from my experience in the GC field so far. During one of my clinical rotations, I participated in a session with a patient experiencing various symptoms who shared an emotional toll: Over the years, they’ve felt unheard by medical providers. I strongly validated the patient’s experiences and expressed empathy for how difficult that must have been. After the session, I received feedback from my supervisor that I may have exhibited countertransference. Countertransference refers to the emotional reactions a health care provider may have toward a patient, often rooted in a provider’s own experience. I respectfully disagree with that interpretation of my approach. I did not feel that my response stemmed from my personal experiences, but rather from a genuine recognition of the patient’s pain and a desire to offer the empathy she had been missing in previous encounters with health care professionals. 

In contrast, I felt that during the session, my supervisor wasn’t fully acknowledging the patient’s concerns, which could only reinforce the patient’s experiences of being dismissed. I was told, “There’s nothing we can do for her; we aren’t the right providers to be able to help her with her symptoms.” But that doesn’t mean we couldn’t offer her compassion and a supportive space for her to share her feelings. At the end of the day, it felt to me like my supervisor didn’t care about the patient, her symptoms or her story. 

For me, this patient’s story was a powerful reminder of how important it is to deeply listen; her years of struggling through the medical system spoke clearly to her need for validation, not a diagnosis. Failing to acknowledge her experience and the experiences of others like her not only perpetuates emotional harm but also reflects the ableism that too often silences and invalidates patients with complex and misunderstood conditions.

An article published in 2019 called “Examining Genetic Counselors’ Implicit Attitudes Toward Disability” by Gould et al. sheds light on how prevalent this issue may be. 90% of study participants demonstrated an apparent bias toward ability, while only 10% showed either no bias or a bias in favor of disability. That means the majority of participants harbored implicit ableism, even if they believed themselves to be objective. I think everyone, in one way or another, holds certain biases — whether they relate to disability or other characteristics. But the presence of bias isn’t the problem. What matters most is how we recognize, manage and reflect on those biases. Bias doesn’t have to define our actions, but it can impact our counseling if left unchecked. Just because you think one way about something does not give you the right to push your values and beliefs onto others.

If a genetic counselor is able to acknowledge their own bias, put it aside and create a space where patients feel heard and respected, then that bias doesn’t have to interfere with the quality of care for our patients. Unfortunately, that’s not always the case. Some providers do allow personal beliefs to shape how they treat patients. This is where the true harm begins.

One area where this tension is evident is in the space of reproductive genetic testing. As advances in technologies, like noninvasive prenatal testing (NIPT), expanded carrier screening and preimplantation genetic counseling, become more widespread, so do the ethical dilemmas they present. These tools can empower patients with information, but they can also unintentionally reinforce ableist narratives that suggest lives with disabilities are less valuable or should be avoided. This challenges us, as genetic counselors, to ensure our counseling doesn’t just focus on risk and prevention, but also affirms the dignity and worth of all lives, whether disabled or abled. All in all, being able to ground our work in the framework of reproductive justice means supporting the individual’s right to make informed decisions based on maintaining their autonomy while actively challenging systematic biases that devalue disability and limit reproductive freedom.

This work of reflection, of accountability and of continuous learning must become a part of our professional culture. Training programs should make space for deeper conversations around disability, identity and bias. Supervisors and mentors should model vulnerability and self-awareness. And as individuals, we should regularly ask ourselves, “Am I embodying the values I promote?”

Disability is not a pathology to be solved or erased. It’s a natural part of human diversity. People with disabilities deserve to be seen, respected and included both in our clinics and in our lives.

As someone with Crouzon Syndrome, a rare genetic condition characterized by the premature fusion of the skull bones leading to distinctive facial features and various other medical challenges, I’ve spent a lifetime navigating social perceptions and internalizing ideas of what it means to live with a visible disability. My experience has given me insight into how powerful and pervasive ableist attitudes can be, even among well-intentioned providers. It’s also what drives me to foster empathy and accountability in our field. My lived experience isn’t separate from my professional identity; it informs it.

So let’s take a look in the mirror. Let’s do the work. Inclusion isn’t a statement or a role to play — it’s a practice that we must learn to implement into our lives in order to care for our patients in the way they deserve and need.

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Reference

Gould, H., Hashmi, S., Wagner, V., Stoll, K., Ostermaier, K., & Czerwinski, J. (2019, August 23). Examining genetic counselors’ implicit attitudes toward disability. Wiley Online Library. https://onlinelibrary-wiley-com.treadwell.idm.oclc.org/doi/full/10.1002/jgc4.1160 

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Photo by Joel Naren on Unsplash

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