I've heard that being a genetic counselor is like being a scientist, a doctor and a life coach all at once. What exactly does your job involve?

Caroline Lieber: What we do is tell people, based on their family history and specific genetic tests, what their probability is for getting an inherited disease. It's not an easy thing to do, but I'd always want to be the one to break the news, rather than leave it to someone else who isn't as well trained to do so.

What does it feel like to tell someone that they test positive for a serious inherited disease?

Joy Larsen Haidle: When delivering genetic testing results, there is no typical "good" or "bad" news. Obviously, most patients probably hope to hear that they've tested negative for major genetic disorders and inheritable diseases. But some patients are relieved to find out they carry a gene for cancer; it's so prevalent in their family tree that they feel it's not a matter of "if" they'll get diagnosed, but "when." So identifying an inherited risk factor for them may be very empowering, as it gives them information. Once they know the type of cancer and the age range in which they may likely be diagnosed, they can start making an action plan to battle it and move forward from the uncertainty.

Caroline: Families are most often grateful to have the diagnostic odyssey be over with. There are lots of noncancer examples, too, like Hunter syndrome, fragile X, SMA—especially with children.

Joy: Many times we hear from families that are grateful for identifying the risk factor for the cancers in their family. It helps them feel like they can take back some control. Once the gene is found and families have the option for risk reduction, the family history changes from one where there are multiple cancers to one in which members may remain healthy. Identifying the risk factor in the family also gives the opportunity for some family members to learn that they are no longer at high risk—in that way, it can be a gift for the family.

How do you prepare to give people information that could radically change their lives?

Joy: While studying at Sarah Lawrence College, we were prepared for not only the clinical aspect of genetic counseling but also the psychological impact that delivering this information would have on our patients and their families.

Caroline: Students in the program now work with the theater department. The student actors play unpredictable patients and the counseling students practice their reactions. Sometimes the theater students' improvisations are strong and vivid, with crying and even some yelling. It's good for our students to encounter a range of reactions, because we've seen every response imaginable. One of the biggest mistakes you can make as a genetic counselor is thinking you know how your patient will respond and then preparing for only that reaction.

Joy: When we go into the room, we have a list of items to discuss with the patient, but we have to be expertly tuned in to their verbal and nonverbal communication. If we've just said something they perceive as negative, our voices quickly start to sound like Charlie Brown's teacher. People hear the first few things you say, and then their heads and hearts are in a different place. We have to recognize that, and then stop giving information and instead attend to the emotional response.

Caroline: There will be another time to talk about the scientific part of it and make a plan for what to do next. Our training focuses on delivering results in empathic ways. Knowing we can talk about these things in a way that's gentle, kind and doesn't hit people between the eyes—it feels good to be the ones to do that.