Scientific Advisors

An Interview with Heather MacLeod, Genetic Counselor

What caused you to enter this field?

I worked in a genetics lab as an undergrad, and my boss introduced me to genetic counseling. I love the mix of helping people, science and education.

What are you most excited about in current research?

I’m most excited that we are slowly reducing barriers for family and patients. With the pandemic, a lot of people are doing telehealth, and we have better reach than we used to – there’s still a lot of work to do, but I think people are getting more and more familiar with genetic counselors and patients and families are being referred and this is progress.

What’s a patient story that sticks with you?

When I was first working as a genetic counselor, one of my very first patients had cardiomyopathy and lots of people in his family also did. The family was part of a research study in the lab where I worked.  When he died suddenly, I remember how much his parents struggled – they wanted his heart to be saved and studied by the lab I worked in, and it was so hard to accomplish at that point. I think that’s one of the stories that sticks with me most and it started me working with medical examiners.  It really inspired me to make improvements in the process for sudden death cases.

Why and how are you involved with the SADS Foundation?

I met Alice in 2005 when the SADS conference was going to be in Chicago.  I was volunteering to give a talk about genetic counseling. I’ve been working with the SADS Foundation ever since. Their work supports families with SADS condition and so they are important teammates for genetic counselors.   My work with the SADS Foundation has helped me get to know so many people in the field and I’ve learned so much from working with them. It’s been amazing.

Is there anything you want families to know about genetic counseling?

Genetic counseling is very helpful in understanding your family’s history, and in knowing what options are available for genetic testing and what the results mean.   They are also very helpful in identifying options for support. Living with a SADS condition can be challenging, and genetic counselors are an important resource for SADS families.