- My name is Stephanie Meredith, and I am the director of The Lettercase National Center for Prenatal and Postnatal Resources, and I'm talking today with my good friend, Katie Stoll, who's a genetic counselor in Washington State. And we've been friends for almost a decade now, and so I really wanted to get some insight from her about her experiences as a genetic counselor, and also about how we can build better relationships between medical professionals and the advocacy community. So I'd like to talk about when we first met, and I'll kind of describe it from my perspective , and then you can describe, you know, your experience with it, because I was at the American College of Medical Genetics and Genomics meeting. Was that, I think it was 2011?



- 11?



- 2011, and I had gone to present about our materials which had just been reviewed by The National Medical and Advocacy Organizations, and we'd done the revision based on their input, and I was there with my poster, and I was so excited because I had a fancy poster, because my husband's a designer. But, you know, I was in the back of the hall, and not that many people, necessarily, come by when you're giving a poster presentation and it felt a little lonely there. And I also felt just so overwhelmed at that moment, too, because that was right when cell-free DNA testing had come out and I hadn't ever seen the kinds of displays that were there to market the testing, and so I just felt really overwhelmed by the movement toward testing, when at the same time I knew that there wasn't the educational infrastructure to support the families, and I was worried about the families on the other end of the test. I just was so grateful when you came by, and first of all, you wanted to talk to me , and you were interested in what I had to say about the importance of supporting families, and giving them that balanced perspective. And you also, you know, had some of the same concerns that I did, because in a lot of ways I felt kind of alone in that there was so much excitement pervading the testing in the rest of the room, and so I was just so grateful. And then, you know, we've since developed a friendship, and that's been, I mean, tremendously meaningful to me, but you know, in that moment, it was almost, I guess, just a relief that someone else understood and was there. So I'd like to hear what your perspective on that was.



- Oh yeah, I would love to share. That was my favorite question on your list. So, I came to that meeting in 2011. It was the first big genetics meeting I had been back to since I had kids of my own. I had taken a little hiatus from these genetics conferences. And I think it might have been my first ACMG meeting, and I wish I still had the booklet. Maybe I do, because I'm sure I went through every abstract and I found your abstract, and it was just like this glimmer of hope in the program book, because I found the whole meeting to be incredibly overwhelming also. I think I hadn't been ever to a medical conference that was so big, but also this was the first year where non-invasive prenatal testing was coming into play, and just the commercialization of genetic testing was just, that was on display in a huge way. In the same hall where your poster was, there were all of these, you know, all of this commercialization of genetic tests in all of these exhibits in the exhibit hall. And I had been really struggling about whether to stay in genetic counseling at all at that point. I was actually just kind of thinking back to after, while I was on my maternity leave with my son how much I thought about going back to nursing school, maybe getting back to something else. But as a pregnant woman who experienced the way prenatal testing options were delivered to me during my pregnancy, I could not ignore how broken the system of providing information was. I was not provided information that would support making an informed choice about whether or not to have these tests. It felt very much like it was just kind of a routine part of the process, and as a counselor that was mainly at that time working in the prenatal genetics, I just felt like, much like I was just a cog in the wheel of this big, you know, messed up machine that was not really respecting parents, or women, in supporting informed choices, but really just to, I guess, follow practice guidelines that have been in place for decades, and maybe didn't even really make sense to some degree. And then, even more, with the new commercialization of testing, to really push these new tests into place. And so, I was at that ACMG meeting just totally depressed, and like I say, finding your abstract was one glimmer of hope. There was a couple of things that were in abstracts that I was of interest in, but especially talking to you and learning more about the Lettercase materials, which were just, to me, seemed like just what we needed to have this balanced presentation of information and photographs that could tell a story about what life might be like for families that are just trying to get more information along those lines. And I felt like, you know, talking with you, the door was just open and I marched right on through it. And we've just been marching along together ever since, which is such a gift to have a fellow traveler that cares about these issues, and is so committed to trying to do better, and building bridges, and trying to understand perspectives that might be different than your own. I think there's so many things that I see in you that I feel like are core to my values as a genetic counselor. It's like, it's just a good friendship that I think we couldn't have asked for better.



- Well, and I think it's meant a lot to me, too, that over the years you've had situations where you've had questions and you feel comfortable asking, and I'm grateful that you do. As far as questions about aging, and questions about even social supports, and different things like that, that you feel comfortable asking me. And I really try to answer with as much candor as possible, because there are, I would say our life is wonderful, but there are also challenges that I'm, you know, I think it's important to discuss, but at the same time to appreciate the individuality of living with any genetic condition, or just being a human.



- Just being a human. I appreciate that, I definitely feel that kind of trust that I could ask you anything, and I hope you feel the same to me.



- Absolutely.



- That we can have these really candid conversations and not be worried that we're gonna offend the other one, offend each other, you know. It doesn't feel, I guess it feels, like I've had the sense since the first time we met that we both know we're coming from a place where we wanna do better, and that it's a complicated problem that not many people think about as much as we do, even understand how complex it is, and I think having that trust is, I think, really, it's probably what's kept me going in this genetic counseling profession, to know that I have people like you in my life along the way here that can help me do better, and that I can learn from and hopefully share back in an equal way to you too.