A: My family history of mental illness really motivated me to get into this area. Various people in my family have experienced different types of psychiatric problems. I have had my own experiences with depression and anxiety as well; it’s very personal.
When I was studying for my PhD, I was looking for genes that might make someone more vulnerable to schizophrenia or bipolar disorder, and my family was really interested. They wanted to know whether these conditions are genetic and what it might mean for them and so on. I found that I just didn’t have the language to be able to explain to them what my PhD research really meant in a meaningful way and it was this that really drove me into genetic counselling.
This was a way that I could get the training I needed to be able to help families like mine understand what we know from research about the causes of these conditions, as well as help them [in what] it means to deal with all of the emotional issues that often get attached to explanations for cause of illness.
A: Research in the area of psychiatric genetics has shown us that there are all sorts of different types of genetic variations that can increase somebody’s risk of developing these conditions; and there is an enormous amount of variability between individuals — even among those who have the same diagnosis — in terms of the factors that have contributed to illness development. Broadly, we know it’s genes and experiences working together that contribute to the development of psychiatric illnesses, but [also it’s] different genes and different experiences in different individuals. Psychiatric disorders are considered ‘complex disorders’ for this reason.
In terms of why this is relevant to people with mental illness and their families, as human beings we need to understand the reasons for why things happen, particularly when it’s a bad thing. When a bad thing happens, we need to understand why, because this can give us a sense of control over the possibility of future similar bad things.
When a psychiatric disorder arises in a family, it’s almost always thought of as an unequivocally bad thing. People need an explanation for cause; they need to know why it happened so badly, that if they are not provided with an explanation that’s coherent and that meshes with their own existing understanding, they create their own explanation for cause of illness based on their experience.
Unfortunately these explanations we come up with about causes of illness often make us feel guilty, ashamed, fearful or stigmatized. This can interfere with our ability to manage the condition effectively. Those emotions get in the way — and that truly is where genetic counselling comes in — because genetic counsellors take what we understand from research about the causes of a condition and we make that understandable to those who don’t have any specialist background in that area.
We help people understand how they got sick but also help them to understand how we can use that as a framework to better manage their mental health going forward.
In the future that I like to imagine, we all have a family genetic counsellor in the same way that we have a family doctor today.
A: I have learned that people with lived experience of mental illness and their families have enormous resilience, but this is a population that has many unmet needs. I have learned that though from the researcher’s or scientist’s perspective, we have a tendency to think that we need to have all of the tiny specific details about how genetics contributes to the development of mental illness figured out before we can help people with this knowledge.
From the family’s perspective, this is not true. For example, just having the opportunity to learn about how genes and environment contribute together to the development of these conditions can be enormously empowering… understanding that it’s not your fault if you have mental illness, but there are things that you can do to protect your mental health, that can also be can be really powerful. Knowing that everyone has some genetic vulnerability to mental illness, this too can be a really big deal. So, basically, I have learned that psychiatric genetic counselling can be really beneficial for people.
