Why Genetic Counseling is More Crucial than Ever: In Conversation with Johanna Schmidt

As take-home genetic testing services continue to take OFF, the need for genetic counselors like Johanna Schmidt is greater than ever. In this in-depth interview Amy Cohen Epstein sits down with Johanna to discuss this rapidly evolving landscape and why genetic counselors are crucial within it. ⁠

Amy Cohen: I'm so excited to be talking to Johanna Schmidt today who is a genetic counselor working in Los Angeles, and has a long really interesting background in genetic counseling. So welcome, Johanna, I'm really happy to be talking to you today.

Johanna Schmidt: Thank you for having me.

Amy Cohen: It's my pleasure. Will you start with a little bit more about your background and how you ended up in genetic counseling? Why did this career choose you or you choose it?

Johanna Schmidt: I started in college; I was a journalism major, actually. And I think that I was drawn to journalism for similar reasons as I ended up being drawn to genetic counseling. Which is that it's about hearing people's stories and taking complex information and making it relevant and meaningful to people. So after that, I decided that I wanted to get a Masters in Public Health and focus on women's health issue.

When I got to the University of Michigan where I did my Masters in Public Health, the Human Genome Project had just been completed. So the sequence of the human genome was known. And the school was really pushing for people in my department to concentrate in Public Health Genomics.

So I went for it (laughs). After I graduated, I got a job working at the National Human, Human Genome Research Institute, which is part of the NIH. I was doing research there with just some really incredible researchers. And I realized what I really wanted to do was be able to work one on one with patients to help them through the process of this complex world of genetic testing. So I went then for a second Masters in Genetic Counseling.

After that, I worked in a hospital setting for about three and a half years. And then my husband's job brought us to Los Angeles. And, at the time, I was towards the end of my pregnancy with my first kid. And so I decided to just kind of take a step back. But I really wanted to remain connected and engaged.

 Because in the field of genetics, if you blink (laughs), you miss something. So I decided to think about ways that I could make my own schedule and find that elusive work life balance that we all look for. And so I thought about it and decided to kind of start a consulting and private practice.

Amy Cohen: That's amazing, what a journey. It takes such a passionate, empathetic person to be a genetic counselor in so many ways. Who are the majority of your clients?

Johanna Schmidt: It's a relatively small profession. There are only several thousand genetic counselors in the country. Early on I got connected to what we call direct to consumer genetic testing. So, in other words, this industry of genetic testing that offers their services directly to people without going through a doctor. And this has exploded over the last decade, certainly, over the last five years — even more so where people are going to the internet for genetic information. Sometimes they're doing that to find out about their ancestry, but people are also interested in learning about their health risks.

“A lot of genetic counselors don’t have the time, or honestly, willingness to talk to people about the genetic test results they are getting online. So I found myself being one of a few counselors that people could go to to discuss their testing.”

So I kind of found myself in this position of providing that kind of counseling where there was a real gap in the service delivery that existed already. Most genetic counselors — I would say, 99% of genetic counselors —work in a hospital setting. So this is a real change from that.

A lot of genetic counselors don’t have the time, or honestly, willingness to talk to people about these genetic test results they are getting online. So I found myself kind of being one of a few counselors that people could go to to discuss their testing.

Amy Cohen: I have such mixed emotions about genetic testing and the ease of getting it. Because there are so many different implications for the information you receive, a lot of which is hard to read, hard to understand.

I always thought that direct to consumer genetic testing should come with a line, "Please go over these as a genetic counselor. Here's a list of names." But I was unaware that so few women like yourself, or genetic counselors like yourself are available for that. Because, like you said, 99% are working in most likely a hospital setting. I can imagine that you’ve helped some people navigate some really interesting situations. Can you share a few stories?

Johanna Schmidt: Yeah, well, I think it's really great advice, especially, for someone who has a family history that would put them in a high risk category. Not only because of the emotional implications but also the logistical implications, even financial. A certain test result could potentially really change your life.

There is that certain like yikes factor when you hear, someone saying, "Oh, I'm just going to go get genetic testing on myself.” But I understand it, you know? People are looking for what’s coming down the pipe. You know, “what do I have to be worried about?” “Can I change my lifestyle?” “How can I mitigate my risk?

I think the trick is really having people understand what they're getting into, what the potential implications are of that, and truly what the limitations are of what's really available today.

Amy Cohen: Yeah, 100%.

Johanna Schmidt: That's an issue I've been thinking a lot about. How can I as a counselor, maximize my ability to communicate with the masses? How can I be there as an educator and somebody who can explain and prepare people for what the possibilities of genetic testing are on a more broad scale?

Occasionally, I'll come across a person who has a genetic variants with associated health risks. And, in that case, I often actually refer them to a specialist who's going to be able to manage their care because I can't do that independently. But a lot of times, I'm talking to people who are generally healthy who are looking for nuggets of information about themselves. They want to know what's coming down the pipe.

But because of the limitations of what's available in terms of how we interpret the genome, that ends up being sort of a similar conversation with everyone. It's a, it's a discussion about, "Well, what does it mean to have a genetic variant? And how do we determine which genetic variants are problematic for our health? Under what circumstances can we change our lifestyle in a way that might improve those?” That's really what it all comes down to.

Amy Cohen: What impact do you think COVID-19 will have on genetic testing? Or have you noticed that already in terms of people kind of wanting to know more about themselves in regard to this pandemic?

Johanna Schmidt: That's a great question, I thought you might actually ask about that, because I've been thinking a lot about that (laughing). There is a little bit of work being done already. We're so early in this pandemic and understanding of this particular virus that all this work is sort of preliminary at this point. But there is some work being done now to try to understand why is it that some people are infected and don't have any symptoms at all while some people get sick for days or weeks or even months on end — or hospitalized on a ventilator. I do know they've identified some genes that might be associated with people who have more severe reaction to the disease. In particular, I think they're looking at some different blood types hat might be associated. But, again, it's all very, very preliminary.

But I do think it’s making people more cognizant — the idea of having to face this common health threat. We can't avoid these health threats. We face them as a society.

It's interesting from a health behavior standpoint — why some people choose to follow through with the recommendations of wearing face masks and some people don't. There's a spectrum of how people are choosing to behave in this environment.

Amy Cohen: It'll be really interesting to see, really interesting. I had a conversation with Dr. Lynda Roman, who's the Chief of Gynecologic Oncology at USC, who's also the Director of the Lynne Cohen Clinic there. And we talked briefly about this. At first, there was a, a lot of trepidation because of some of the chemotherapy drugs that women are on, it, you know? It really jacks up your immune response.

Johanna Schmidt: Yeah.

Amy Cohen: So they were nervous for these women, in particular. There are obviously women who have to be extremely, extraordinarily careful right now. And I, I do think that this situation will create a wave of people who are more interested in their genetics, and what that means for them in terms of risk. What does it mean for them and? Do you wear a mask? Do you send your kids to school? Do you stay home? I believe (laughs) fundamentally in science, and in, in knowing the information. Johanna, thank you so much. I think what you do is so incredibly important. It's just phenomenal. And I know that you've changed a lot of people's lives. So I thank you for that. And thank you for your time, I really appreciate it.