What does a genetic counselor do?

An introduction for parents

March 28, 2026

‍Kaela Kraft: I've seen families where they've been searching for answers for years, and that uncertainty can feel really exhausting and isolating, especially while navigating a unfamiliar medical system. So sometimes the most meaningful moment is not even the test result itself, but using our counseling skills to, you know, validate that what they've experienced makes sense; and we believe them in their journey; and seeing the relief that follows there.

Sarah Hutchison: We all know that rare diseases on their own are inherently rare, but when you add all of them together, it's really a big group of people who are impacted.

What's one thing you think rare disease families should know about genetic counseling?

‍Geo Beek: I think that an interesting way to think about a genetic counselor is almost like a concierge. Like there's somebody that you can go to with any question.And because of genetic counselors experiencing the science and the actual genetics piece of it, if it's a really technical question, it's probably gonna be a question that they know and that they're excited to explain and tell you about.

Sarah: Something that I've seen to be really impactful is when genetic counselors are working in that thing, particularly in rare or complex diseases, and they get to see patients throughout the course of their lifetime and work together with to set meaningful goals for those specific children.Because as we all know, even if two children have the same genetic condition, they can have different features and have different presentations and different experiences.

‍Kaela: I think that genetic counselors are in a unique position as health care providers to really practice holistic care. We really think about factors outside of just the diagnosis or ordering a genetic test. Things like insurance barriers or navigating family dynamics, and other barriers that may come up in pursuing a genetic diagnosis.

In the future of medicine, how does AI complement the very human role of a genetic counselor?

Sarah: I think it's just all about using all the resources at your disposal and AI can be a resource, but that human connection and the people going to support you on your journey can also be beneficial. So it's really just using all the tools in your toolkit and figuring out what works best for you.

Geo: For many things that we’re building [at Citizen Health], like our products that are supporting IEP writing or insurance appeals, those are kind of rinse and repeat processes that, unfortunately, many people are dealing with over and over. But there are still so many pieces of rare disease that are not cookie cutter. Every rare disease is different, even if we look at two patients in the same rare disease, they can be extremely different. And so I think that, you know, genetic counselors have this ability to kind of fill that gap in some ways.