Inside the GENOME

Psychosocial Aspects of Hereditary Genetic Testing with Dr. Karen Hurley

June 28, 2021 Myriad Oncology Season 1 Episode 21
Inside the GENOME
Psychosocial Aspects of Hereditary Genetic Testing with Dr. Karen Hurley
Show Notes Transcript

In this episode of Inside the Genome, Dr. Slavin talks with  Dr. Karen Hurley. Dr. Hurley is a licensed clinical psychologist in the Center for Adult Behavioral Health at the Cleveland Clinic in Ohio. She has given numerous presentations on patients’ psychosocial situations as they experience the genetic testing process.



0:00:11.2 Dr. Thomas Slavin: I am Dr. Thomas Slavin, Senior Vice President of Medical Affairs for Myriad Oncology. Welcome to Inside the GENOME. Hi, everyone, welcome back to the podcast. Today we have Dr. Karen Hurley. Dr. Hurley is a licensed clinical psychologist at the Cleveland Clinic in the Center for Adult Behavioral Health. Dr. Hurley has given numerous presentations on the psychosocial challenges faced by patients deciding to undergo genetic testing. Welcome to the podcast, Dr. Hurley. Thank you so much for coming on.


0:00:40.5 Dr. Karen Hurley: Thank you so much for having me. It's a real pleasure to be here.


0:00:44.7 DS: Yeah, no, we've known each other for some time, so it's nice to get to chat with friends. I hope that the audience by the end really has a good understanding of what you do. Yet I always think of you a little as unorthodox in your training and kind of what you do. You're really carving out your own sub-field of genetic testing, which is fantastic. But if you could give a little bit of how you got to where you're at in your life, I think it would be very helpful, and then maybe a little bit about what your average day looks like and week.


0:01:17.6 DH: Yeah, thanks so much for asking because I like telling this story in part to help other people who are in some kind of professional track about how does your focus evolve? So mine actually started in the fourth grade when I would be with my...


0:01:40.3 DS: Wow.




0:01:42.2 DH: Yeah, exactly. I would be with my classmates, and we'd be playing Peanuts characters. And I was Lucy, "The doctor is in, 5 cents, please." Right? So it looked pretty early on, like I was destined for a career in psychology. I did major in psychology in undergrad, but then when it came time to apply for graduate school, I realized that I had a child's view of what psychologists do, but I didn't know what that was gonna mean as a grown-up.


0:02:17.3 DS: Yeah, yeah.


0:02:18.3 DH: So I floundered around a little bit. I thought about medical school. I thought about acupuncture. I thought about naturopathy. I thought about Divinity School. I mean I was just really all over the place.


0:02:28.1 DS: Oh wow. Yeah the whole spectrum.


0:02:31.0 DH: Yeah, and then what caught my attention was in the mid to late '80s is when behavioral medicine and health psychology was just starting to take off, and I felt like that combined two interests of mine, the interest in medicine, but at the same time, realizing that the path through medical school was not for me, but rather, what did this mean for patients as they were being presented with very difficult situations? So I started my clinical psychology program. I had an advisor who was working with a gynecologist, and our first project was on women who got abnormal pap smears and whether or not they would come back for their colposcopy, right? 


0:03:30.6 DS: Interesting.


0:03:32.3 DH: Yeah. And then we moved on to a project on emotional distress in patients who are undergoing infertility treatment, and then my advisor hooked up with Mary Daly at Fox Chase. So this is now the mid-1990s, and so there I am as a research assistant sitting at this big table, listening to all of these researchers at different levels, talking about genetic testing. At that time, they were recruiting women who had very prominent pedigrees where these families were devastated by cancer, multiple incidences of illness and death, but then they had this other cohort of women who didn't qualify for those gene discovery trials, but who still were being followed because of their cancer history. And what I noticed was that the women who had a history of having a first-degree relative, a mother or a sister who'd gone through ovarian cancer, and most likely had lost someone to ovarian cancer, because at that time and even now, the screening is not effective in detecting cancer early, and they were being advised without the testing yet being available to them to undergo risk-reducing oophorectomy, which at that time we were calling prophylactic oophorectomy and have since...


0:05:14.8 DS: Yeah, so this was when? Maybe the late '80s then probably? 


0:05:18.2 DH: No, this was about '95, '96, right? And I was sitting there thinking, "How in the world do you make a decision like that? I was thinking about the emotional intensity, and I was also thinking about all of these women who are on basically on the edge of science. There was no data. There was no guidance. There was a lot of concern about what their futures were gonna be like, and so without the benefit of testing they were being asked to decide, "Do you want that surgery or not?" So that became my dissertation.


0:05:58.9 DS: Oh, wow.


0:06:00.3 DH: And I interviewed probably 100 women, many of them personally, I never met them. I was talking with them on the phone, and then it became my life. So it was very much a process of following my nose in terms of my interest and then being in the right place at the right time and just feeling that sense of rightness, "Oh, this is my place. I can do something about this."


0:06:31.9 DS: Yeah. No, very interesting. So tell me about your first job then. I mean, you're kind of getting out of that training period. So how did you say, "This is what I wanna do, and this is the kind of practice I wanna run?" And then how has that transformed over the years to what you have today? 


0:06:48.1 DH: There have been a few shifts. So I started in an all-research postdoc at Mount Sinai. I was working with Bill Redd, who was one of the early pioneers in psycho-oncology and behavioral research in cancer, and that was great. Then after three or four years, we were doing things like looking at adherence to recommendations for colon cancer screening. I started to get a little bit of an itch to do some clinical work again. So I got a position at Memorial Sloan Kettering. It was part research, part clinical. I was doing psychosocial research in hereditary cancer. For the first time, I was in the room with women, who were making these decisions, and what I really noticed is that there was a heaviness to the decisions that at first I couldn't explain. We had these psychosocial models that talked about pros and cons, that talked about making a balanced intellectual decision between things like perceived risk, perceived efficacy of the treatment, but there was something missing. And then as I was reaching back into my clinical training, I finally realized that what was missing was awareness of mortality.


0:08:16.0 DH: We were talking about cancer. Especially back then, but even now, talking about cancer, once that word is on the table, mortality is lurking somewhere, even with all of the treatments that we have available. And even though we were developing this technology to help women avoid disease and mortality that had devastated their families.


0:08:41.9 DS: Yeah, yeah.


0:08:42.9 DH: Right? But it was still in the shadows in the room. I had to learn a way to kind of touch on it, but not make it overwhelming, and it was a delicate balance. And I had no guidance, no textbooks. It was pretty much all feeling except for thinking about the existential realities that we all face and realizing that genetic testing kind of pushes those to the fore. So we all have to make decisions without knowing the future. We're all mortal without exception, good genes, mutated genes, but at the same time, I saw that these women were somehow feeling like they had been separated out from the flow of humanity. So part of my job was to bring them back into the flow and saying, "Technology is putting choices in front of you that we haven't faced before, but in some ways, the questions that you're facing about the role of fairness. Why does one person get sick and another not?" Those questions are thousands of years old.


0:09:58.1 DS: Yeah, yeah. And even though you still had now some testing data that you could show people and say, "You are or you are not carrying such a gene, and here's some general risk." We're still trying to figure out risk [chuckle] and risk... Ancestry, and everything else.


0:10:11.8 DH: It's very true. Yeah.


0:10:13.9 DS: And back then you didn't have the luxury of... I would think support groups would have been in their infancy, just a lot of things, patient-level material, otherwise that's out there really... You really didn't have the web and all the things, the goodness and bad things that sometimes that can bring.


0:10:30.8 DH: That's true. And things at times were moving really fast because we went from testing for the original three Ashkenazi Jewish mutations that were prevalent to... Then there was the expansion to... No, I remember when we started doing wide re-arrangements, and then the move to multi-gene panels. And so every step along the way, there's been an adjustment in how does this affect people? So sometimes you get people coming from families that have been devastated by cancer, and sometimes this comes completely out of the blue. And then now, with panel testing, you get women who go in for a family history of one thing, but then they test positive for something that they weren't expecting. So in each iteration of advances in testing, there was a corresponding change that I had to make in being able to support and counsel people who are going through this.


0:11:41.4 DS: Yeah, yeah. And so how do you function now in the clinic? Are you mainly seeing people after they had genetic testing or are part of the process? Are you doing the genetic testing? 


0:11:52.2 DH: Yeah. So mostly it's people who are in the genetic testing process. It's interesting. I started out counseling women who were going through BRCA1 and 2 testing, expanding to Lynch, and now my practice is basically all comers in terms of cancer risk. I have patients with Lynch, with FAP, with VHL. I've had patients with Li-Fraumeni. It's pretty much anything that involves that constellation of high threat, big decisions to make, processing complex information and impact not only to the individual, but other members of the family.


0:12:40.1 DS: Yeah, so most of the time these folks would have had testing, now are seeing you. And are you following them long-term? I mean, what does a general kind of session and cadence look like with you? 


0:12:55.8 DH: It kind of depends. For some people, they've been doing pretty well psychologically. They have really good support systems, good coping skills, then the genetic information comes along, it's hard to take in, it's hard to handle, but they get their feet under them relatively quickly. So I might see them once or twice. If someone is trying to decide about surgery, we do that. If they have an upcoming surgery, we might focus a little bit on preparation for surgery.


0:13:32.1 DS: How do those people even get to your doorstep? Is there some screening process or people who are referring a certain type of patient? 


0:13:39.1 DH: It's mostly internal referrals. Once in a while, I'll get an external referral. When I made the move from New York to Cleveland, I still have a couple of New York patients who I see.


0:13:51.7 DS: Oh wow yeah.


0:13:53.0 DH: Yeah, yeah, because I sold my New York license. But then there are some people for whom the genetic testing lands on them differently due to a life history that might include other traumas or stress. Maybe they've had another chronic illness condition and their lives have already been disrupted by illness and then they get this information or people who've been through child abuse, verbal abuse, growing up with a parent with a substance abuse disorder, things like that. And so these things are not separate from dealing with the threat and the uncertainty that goes along with being at risk for cancer.


0:14:46.3 DS: Yeah, so when you first meet with a new referral, do you do kind of an overall intake of all this to get to all these other potential issues in the background? 


0:15:00.0 DH: That's right, and I think because so many people have shared their stories with me, it's almost like knowing kind of, "Does it hurt here? Does it hurt there? Does it hurt there?" Knowing where those sensitive spots are likely to be so that we can pretty quickly see what are the vulnerabilities, but also what are the strengths, what's the resilience? What can we put in the plus column, and bringing that to the fore again with the goal of reassuring someone that they might feel confused or upset by the information, but that they will get their feet under them, that most people are resilient and will, on their own, come around in an objectively short period of time, even though it might feel like a long time.


0:15:55.6 DS: Yeah, yeah. And what are some of the skills that you try to give people to help them cope through this whole thing? 


0:16:05.5 DH: So one of the most important ones is to identify their best social supports and to use them. So sometimes I'll see people who are the rock of the family or they don't wanna worry other people, so they don't necessarily talk about what's going on, even though they have a lot of people available to them. So that's where support networks are so important. I've been involved with FORCE for a long time, for example, and being able to steer people towards places where they can get reliable information and also to just see other people who are maybe a little further along down the path and say, "Okay, if you can do that, I can do this."


0:16:58.0 DS: Yeah, FORCE for those that don't know, that's an advocacy group really focused on hereditary cancer. It was started out with the BRCA1 and 2 and has now transitioned to more all things hereditary. How have you seen your field grow? I mean you're really starting out from the beginning of it, and you're getting to really shape it to some extent. Are you seeing more people around the country starting to do what you're doing and offer these types of services? 


0:17:26.8 DH: I think I'm starting to see more people although it's hard to maintain it as a micro-specialty because there's so much happening in the field, there's so many developments in testing and risk information. For example, every conference I've gone to in the last two years has featured sessions about polygenic risk scores, right? What are people doing with that? So it's trying to...


0:17:54.9 DS: Especially again, it's like absent guidelines, I mean it's kind of a similar world right now where we know this is important [chuckle] and it's part of your genetics and it was inherited, but in some ways even almost more complex than just BRCA1 and 2.


0:18:14.0 DH: That's right. So people are constantly coming in with complex genetic and medical questions about pre-implantation genetic testing and alternative forms of fertility. For example, I've had a few patients who were BRCA and mutation carriers who chose to use an egg donor to avoid passing on their mutation, right? 


0:18:42.3 DS: Yeah.


0:18:42.8 DH: But again very difficult, very complex decision. And then if you go to a therapist who's never heard of this, the patient will usually spend most of the session educating the therapist, so that was one of the major reasons that I really decided to develop this focus so that people could come in and we could focus on what the information meant for them.


0:19:11.7 DS: Yeah, and so are you seeing more centers have someone doing what you're doing? 


0:19:16.4 DH: I'm seeing them here and there. It's spotty. It kind of depends on part, maybe a major cancer center will have enough staff that they could afford someone to specialize, things like that, but I think it's still a little bit of happenstance if somebody lands with the right training.


0:19:41.1 DS: And a match with their passion. Clearly you were always very interested in this, and even when you were describing your training, you can see kind of a path to women's cancers and interest.


0:19:52.0 DH: Yeah, and what I was thinking about was that if I were starting out now, if we could sort of dial the clock back, I would be interested in dual training as a genetic counselor and psychology. I feel like psychology and genetic counseling, we're natural allies. We have lots of overlapping interests. And genetic counselors are not gonna necessarily do psychotherapy in their sessions, but to the extent that they're sensitive to psychosocial issues can make them more effective. And likewise for a psychologist, being aware of the complexity of the demands on patients in these situations, I think that there's more that could be done for joint training. I've been spending a lot more time in the last few years, doing workshops for genetic counselors and spending time connecting with the National Society for Genetic Counselors, NSGC. It's a fabulous organization, so doing some training here and there with them to promote this idea that we need to work together and combine our mutual strengths to support patients.


0:21:16.1 DS: Yeah, and it is a nice component of their training, and I'd imagine you would just bring such a richness then that you could add into what they're already learning and their passion for genetics. I was just thinking, as you were talking, do you have one success story that really stands out to you in a HIPAA-compliant fashion, [chuckle] that you can think of where really something out of the box that you can say, "I definitely made a big difference in that person's life."


0:21:49.8 DH: So that just gave my brain a traffic jam [chuckle] because so many different stories flooded into my head at once. So the one that floats to the top was an FAP patient. And she had had her initial colectomy, her sub-total colectomy a number of years ago, but she did need a revision. So she was coming in, and she was very distressed about the possibility of having to have an ileostomy bag for a few months before her surgery and her revision could be completed and...


0:22:32.3 DS: Yeah, and real quick for the audience. FAP is a familial adenomatous polyposis syndrome. It's where you make thousands of polyps throughout your colon and intestines.


0:22:43.4 DH: Right, and as a psychologist, I had to learn to let those kinds of terms, familial adenomatous polyposis, flow off my tongue like it didn't occur... It wasn't there in my psychology books. She was so distressed about the prospect of the surgery that she said, "I'm just gonna stay alone in my room for three months until this is all done." And I thought, "Wow, okay. What am I gonna do about this?" But there was something about her presentation, it was a little dramatic, so I took a slight risk. And I have this picture of her in her bedroom, and that there would be like a little cat door at the bottom of the door to slide her meals in. And I shared that image with her, and then we started talking about how you never really know until you're in this situation what it's gonna be like. I started talking about how most people are resilient, but it's not necessarily pretty or easy or inspirational. It's a slog.


0:24:05.6 DH: It doesn't feel good until you hit that moment where it kind of comes together in your head and you say, "Okay, I guess I can do this." And she told me that a bunch of friends had been sending her links to sites that had sassy colostomy lingerie and she was just... And you had to picture her. She was very well put together. She had hair. She had a beautiful manicure, the whole thing, but that was not persuading her. But when I talked about, "I can't tell you when or how this is going to happen, but you are gonna figure out." And she says, "Oh, it's gonna have to come from me. Right?" And I said, "Yeah." So three days later, I'd go to her hospital room actually, post-surgery, and she's there in the wheelchair, but she's got balloons. She had a brand new manicure. There's people everywhere whereas she had just said, "I don't wanna see anybody until this is all done." But it was like a party, and her husband was in the background, nodding and saying, "Thank you."


0:25:21.4 DS: Oh, that's great, yeah.


0:25:23.1 DH: She had figured it out. She didn't have to hide herself away. She was gonna be all right, and who wants a bag? Nobody. She was gonna be okay.


0:25:36.2 DS: Yeah, yeah. That's great. Well, you clearly have helped a lot of people and bring so much wisdom to this whole field, and a field that you're really helping to create. So hats off to you, and thank you so much for coming on to the podcast today.


0:25:52.0 DH: Thank you so much. It's really a pleasure to be here, to see you again, and I hope this talk sparks things in people to just attend to that human side of the technology that we're creating as we go.


0:26:10.8 DS: Yes, absolutely.