Genetic counsellors see human side of cutting-edge tests

“Counsellors help the family understand the genetic basis of that condition.” RIYANA BABUL-HIRJI GENETIC COUNSELLOR

Genetic counsellors guide people — and families — through the complicated nature of genetic conditions such as cystic fibrosis, cancer and mental illness. Riyana BabulHirji, a genetic counsellor at Sick Kids Hospital, shares the best and worst parts of the job.

Q: What does a genetic counsellor do?

A: Once a diagnosis is made, genetic counsellors help the family understand the genetic basis of that condition. Often, one of the underlying feelings with parents is guilt, feeling like it’s something that they did that caused this in their child. So some of what we do is explain that it’s not something they’ve done, it’s something that was inherited and we can’t control it.

Another part of what we do is keep families updated in terms of research. And if they are thinking about another pregnancy, what their options are and risks are. We also address any psychoso-

cial effects as well as being advocates for them for resources and other things they may need.

And we look at the implications for family members and how they go about communicating this with those family members. Q: What kind of training do you need? A: All genetic counsellors have a masters of science in medical genetics and genetic counselling. We work collaboratively with clinical geneticists as well as a multidisciplinary team. Q: What’s the most common myth about genetic counselling?

A: I teach a first-year course in genetic counselling (at the University of Toronto) and I ask the students on the first day of class, when they told people they were thinking of becoming a genetic counsellor, what was the reaction?

The response is often that they don’t quite understand what a genetic counsellor does, and the first thing they think of is eugenics. That we’re here helping parents to have that “designer baby.” It’s

not that at all. It’s helping families adjust to the genetic condition that they may be at risk for and help them make choices that are right for them. Q: How do you break bad news? A: One of the toughest parts of the job is giving bad news. You need to be sensitive; you need to understand what they know, and based on that, you can give them information in small chunks and check in to see if they are OK. There is no formula; every family is different. Q: Have you had memorable patients?

A: It’s very hard. One comment that is often raised is that you’re talking to people about the genetic condition, but there often isn’t any cure or treatment available, so how are you really helping?

But families really appreciate talking to health care professionals who understand what they may be going through.

What we often hear from them is that just having someone to talk to makes them feel not so alone.