Welcome to the third episode of Sci-Tea where we're talking all about risk perception!
Join us (Ryan & Nanci) for a conversation with Dr. Heather Pond Lacey and Hayley Bottino on Friday, November 19th for a discussion on individual differences in risk assessment.
We first talk about Dr. Heather Pond Lacey’s article, “Measuring individual differences in emotional sensitivity to probability and emotional reactivity to possibility.” Dr. Lacey explains how she first got interested in learning about how people make decisions on their health and gives examples from real-life situations. Then, Hayley Bottino gives us her backstory on how she became a genetic counselor. She explains how in her job there are many situations where she informs patients about risks, and that all patients perceive the risks differently and therefore make different decisions. The basis for the discussion is then set, and throughout the conversation, we all discuss how people have different levels of emotional reactivity to the possibility of something occurring, how the field of genetic counseling is quickly evolving, and how important research and communication are in the health field.
✨ Dr. Heather Pond Lacey is an associate professor at Bryant University. She is a cognitive psychologist who specializes in judgment and decision-making. Her research focuses on health-related decisions, quality of life, judgments of aging, and health conditions. She is a member of the Society for Judgment and Decision Making, the American Psychological Association, and the Association for Psychological Science. She has also received an Excellence in Teaching Award.
✨ Hayley Bottino is a Genetic Counselor at Loma Linda University Health. Hayley received a Bachelor of Science in Biology and Applied Psychology from Bryant University. After graduating Bryant, she attended Keck Graduate Institute School of Pharmacy and Health Sciences. She graduated in 2020 with a Master of Science in Human Genetics and Genetic Counseling (MSGC). While working towards her graduate degree, she was a genetic counseling assistant at St. Vincent Health for over a year. At St. Vincent Health, Hayley was a resource for two genetic counselors, and she coordinated genetic testing for patients. She also provided support for patients and advocated to providers, insurance, and genetic testing companies on behalf of patients. Hayley loves that genetic counseling combines aspects of biology, psychology, and sociology, and she is honored to be able to empower patients through education of their genetic status.
Materials Referenced in this Episode:
✨ Check out Dr. Heather Pond Lacey’s research article: https://onlinelibrary.wiley.com/doi/abs/10.1002/bdm.2194
Description of series: Sci-Tea brings behavioral science researchers together with multidisciplinary practitioners and policymakers for open conversations that demonstrate how the value of research can extend far beyond publication. Join Dr. Nanci Weinberger and Ryan Linn Brown in the latest addition to Ryan’s Science, which is a cross-platform science communication outlet that fosters curiosity and excitement around scientific research. Grab your tea (or drink of choice!) and join the conversation!
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✨ Credits ✨
🔹 Sci-Tea was created by Dr. Nanci Weinberger and Ryan Linn Brown
🔹 Music was generously made by Kyle Evans. Hear more: https://www.youtube.com/user/kyleevans81
🔹 Animated graphics were kindly made by Yoully Kang. Follow her on Instagram @dearyouily for more!
🔹 Edited by Ryan Linn Brown
🔹 Captions by Mia Skowron
🔹 Sci-Tea is supported by Bryant University's Center for Health and Behavioral Sciences
[Ryan] hey y'all Im Ryan [Nanci] and Im Nanci and this is Sci-Tea where we bring you engaging conversations between researchers and practitioners [Ryan] we feature leading experts as well as early career researchers in psychology and beyond who will be speaking with other professionals working in settings such as hospitals schools and governmental agencies [Nanci] so grab your tea [Ryan] or drink of choice [Nanci] and enjoy the conversation [Nanci] we're so glad you can be here today and we have two fabulous guests Im going to start off by introducing Dr. Heather Pond Lacey Heather Pond Lacey is associate professor at Bryant University she is a wonderful colleague and friend of mine Im happy to have her here she is a university trained cognitive psychologist who specializes in judgment and decision-making research her research focuses on health-related decisions judgments of aging and quality of life and health conditions she's a member of the Society for Judgment and Decision Making the American Psychological Association and the Association for Psychological Science Heather has also received an excellence in teaching award at Bryant University and she is a dedicated faculty mentor to many student researchers welcome Heather [Heather] thank you very much really nice to be here with you guys [Nanci] great [Ryan] and we're so excited to also have Hayley Bottino who is a genetic counselor at Loma Linda university health and Hayley received a bachelor of science in applied psychology and biology from Bryant University and after graduating from Bryant she attended Keck Graduate Institute School of Pharmacy and health sciences and she graduated in 2020 with a master of science in human genetics and genetic counseling and while working towards her degree she was a genetic counseling assistant at St. Vincent health and Hayley loves genetic counseling as it combines aspects of biology psychology and sociology and she's honored to be able to empower patients through education of their genetic status so we're so excited and we actually graduated from Bryant in the same year which is really exciting too yeah and very [Heather] it was the best class ever [Ryan] and Dr. Lacey was a huge part of our enjoyment of Bryant as well as Dr. Weinberger [Heather] it was mutual [Nanci] yay us [Ryan] so we're really excited to talk about Dr. Laceys research and the ways that Hayley has been applying that research so the research was involved with developing a novel method to gauge two components in individual risk assessment so this method measures individuals emotional sensitivities to the probabilities of various risks as well as individuals emotional reactivity to the possibility of those outcomes so this specific measure is a possibility probability questionnaire and it was modeled to predict responses including risk assessment responses to hypothetical health decisions which I think is really fascinating and participants were asked to make hypothetical health decisions about prenatal alcohol intake homeowner asbestos abatement and cancer surgery so the findings demonstrate the importance of examining individual differences in emotional sensitivity to probability information as a way to better understand the process of meaning making meaningful decisions and we saw a lot of implications around this study and as we can see with what Hayley is doing now with genetic counseling as well as so many different domains so we really wanted to dig into that today with some questions and we hope that you also feel free to ask each other questions here as well [Heather] okay it's great I want I want to dig in and find out more from practicing genetic counselor [Nanci] yes that sort of that is our goal of psyche is to get make these kind of connections because research is valuable and the kind of work that people are doing in the community so valuable but having the conversations are also critical and often hard to find and to sort of introduce the research it might be helpful if we do a little bit in the back getting to know a little bit more about your background so Im going to start with asking you a question Heather maybe you can tell us a little bit about how you became interested in studying health decision making questions in particular you know what is it about those decision making issues that are particularly exciting for you [Heather] so Id love to be able to tell you that this was a lifelong you know intention and passion and that I always knew Id want to understand how people made decisions about their health and that's absolutely not true this was sort of circumstantial you know luck exposure it sort of brought me here I studied cognitive psychology in graduate school and when I went on to a postdoc I landed at the Center for Behavioral Health and Decision Making I was just a joint program at University of Michigan and the VA Ann Arbor and I was working with just some really smart really cool people who did these really clever studies and they were studying risk perception and they were studying quality of life perception and they were studying you know health discrepancies and just really interesting stuff yeah just really cool folks I got hooked it was it was really as simple as that it was you know I landed in the right lab to expose me to the right stuff and I kept going with it [Nanci] that sounds great I mean it sounds like there was so much of there to dig into like you didn't really have to go very far to pull out lots of different examples different directions [Heather] absolutely you know you'd walk down the hall and different people are working on different projects that are all under this same theme of health decision making but they're fairly diverse directions within there and I got to tell you I remember like those are the best lab meetings ever just sitting around that huge conference table and everyone's firing out ideas and you know some studies they're deep in the weeds of the analysis but other studies they're just you know tossing out ideas and throwing concepts around it was a really fun place to work [Nanci] that's exciting [Ryan] could you tell us Im just thinking as like in student mindset and could you tell us a little bit of just a few examples of like the different types of within health decision research like the different types of directions you can go or maybe what you were just exposed to their sort of those different experiences [Heather] sure like just to talk about the kinds of things I was exposed to there so for starters the group I was working with so it was headed by a guy named Peter Ubel really smart dude he is a practicing physician he has a PhD in philosophy I think and then found himself drawn into psychology and decision making and you know I think he had started a lot of his work in sort of the philosophical domain of health care rationing and I think that's one of his what one of his early books was about and he had developed this center and then there were some other folks that were sort of earlier in their career Angela Fagerlin who's now a big name in the field Brian Zikmund-Fisher who's now a big name in the field Dylan Smith as well like all of these folks were early in their career but developing into in that direction and sorry Im just giving shout outs to these cool people they the kinds of things I like that I walked into for example I was really fortunate they had a study that was kind of in the early stages and they needed someone to take it over and so that was one of my first big things it was looking at health related quality of life perceptions and so the idea here is that if you ask someone who's healthy how bad would it be to have this condition and maybe it's emphysema or maybe it's obesity or maybe it's diabetes or something else right people who don't have that condition say that would be horrible I wouldn't want to live anymore my quality of life would be terrible you ask people who have those conditions then they're like life is pretty fine you know it's not a big deal and so there's a big literature on whether that's just denial on the part of the people who have those diseases and whether it's something called scale recalibration so basically the idea that you know my life is so crappy that I can no longer even imagine a really good life so the ceiling for me is much lower so what I call a 70 out of 100 is not the same as your 70 out of 100 as a healthy young adult right and so there was all this debate in the literature about that and so I walked into a study where we basically looked at different ways of measuring that so you could ask people to simply rate how they felt about this disease okay so you say 70 and I say 70 but maybe they're not the same 70. but what if instead we gave you 20 different health conditions and we asked you to rate all of them and then we look at the way they rank right if you're really just scale recalibrating right if you really just can't use the scale the same way anymore because of your bad life situation you would expect that you know I have diabetes and it's number you know 12 on this list and that should stay in the same order but it should all sort of shift up the scale right it should be artificially jumping up everything together in the same rank order and so you shouldn't see a rank order difference between the healthy people and the sick people but if having diabetes teaches me that diabetes isn't that bad then what you might see is that my diabetes rating should be higher right but it should jump up the line right so it's not that everything gets elevated it's that diabetes just isn't as bad as these people think it is so you should see that that score should jump but everything else stays the same and that's what we found so we found evidence that it wasn't you know a scaled recalibration problem that's the kind of thing that I stepped into later I started doing things with Nanci mentioned that I have some background age and quality of life so we were looking at so something called affected forecasting was is a big topic in judgement and decision making well in the case of age there's still finding that had been in the older you get to get at least to a point right it at least things might get a lot but an happiness goes up not down with age but we did a study that looked at people's perceptions of that and found exactly the opposite right most people think that happiness is going down that's true of the young people who haven't been old yet they're expecting a downhill trajectory it's true the older people who've actually been both ages and as they look back they still convince themselves that they were happier back when but if you actually look at 30 year olds and 70 year olds the 70 year olds are happier so those are the kinds of things that I got into there are other folks looking at you know again risk perception which is the direction Im now doing which is more related to the paper we'll talk about more today there were people who were looking at you know how amputees Assoc- you know you know adjusted to their quality of life changes or people with you know all kinds of life-changing you know health conditions so it was a very cool fruitful place I probably meandered a little too much there probably talked on a little too much but [Nanci] I think it's great foreshadowing to what one of the things that I hope that we're going to talk to Hayley about as far as our difficulties with affective forecasting making predictions about what our own how we think we will be able to feel about something how much we might be able to handle something [Heather] whether we can cope [Nanci] how much can we cope with some difficulties so I think Im sure that that plays out a lot in the work that you have Hayley and maybe you can speak a little bit about you know your how you before we get to that maybe a little bit about your background I know that you have really for a long time wanted to become a genetic counselor maybe you can talk a little bit how you got here and you know what does it mean to be here now [Hayley] of course so I you know was a freshman in high school taking my freshman biology course and when we hit the topic of genetics I just felt like you know this is really interesting I think it's incredible that we can predict traits we can predict the probability of a genetic conditioning condition occurring and so when I you know happened upon genetics I really tried to focus on like okay I can see myself in this field but what would be best for me I didn't think that a medical doctor was a route that I wanted to take I didn't want to be in a lab so I was trying to still see how I can interact with patients and still work in that genetic space so after much research I came upon genetic counseling and it was a new and up-and-coming a profession a very small amount of genetic counselors out there in the U.S. so you know Ive been my research then and then I decided you know Im going to attend Bryant I want to do psychology and biology to set myself up for just you know having those genetic the genetics and the counseling part of everything and so I worked for a year in Indiana as a genetic counseling assistant just to gain a little bit more information on genetics and everything I did learn about genetic counseling from the time I started high school to that genetic counseling assistant position just my love for genetic counseling grew as I learned more about the profession and so I ended up at Keck Graduate Institute in California and studied two years genetic counseling and recently you know took a position at Loma Linda university where Im a prenatal genetic counselor there's multiple factions cancer prenatal neurology cardiology and I ended up here in prenatal and you know just I was excited to be invited to this conversation because there are so many factors that go into decision making especially in the prenatal realm because it's not just a blood draw it's you know an amniocentesis it's a procedure that has risks so it's not just the genetic testing itself it's the procedure to get to the genetic testing and so you know like I said multiple factors play a role whether it's this is their first child or it's their fifth child have they had miscarriages in the past and they don't want to risk another type of event like that is this information that they will be making pregnancy decisions about such as ending a pregnancy or maybe placing the child up for adoption so many factors go into this decision making and so yeah just very excited to be here and talking about that especially with the work that Dr. Lacey's done so very exciting being here [Heather] that's really cool [Ryan] yeah it ties in so perfectly and as Dr. Lacey was talking to about just the like level of individual difference in in in how we make these decisions and I hadn't thought about the actual procedure of doing the genetic testing that you're talking about so that that extra layer is so interesting and I and I you talked a little bit about it there but Im just wondering if you want to expand on like what kinds of sort of individual differences and like risk assessment and things like that you run into in your practice [Hayley] yeah of course so you know we always reserve bias you know we're there to present information on every single decision and then let them choose the best route for them so in the realm of an amniocentesis which is a procedure where we remove a little bit of the amniotic fluid in our fluid is fetal skin cells we're able to test fetal DNA directly that way and it's one of the only prenatal diagnostic options there's no other way to confirm diagnose a prenatal diagnosis other than this procedure and the risk of a miscarriage is about 1 in 900 and so we present it that way we also try to switch it around and say you know it's also 0.001 percent and so we try to give them all the different types of numbers we can give them but it's also important for us not to place value on that where I might think that that's the low risk that could sound very high to someone so I can't just say you know oh it's just 0.001 that's not my place so some of the risk like I mentioned different decision makings and beyond the fact that a woman has had a miscarriage in the past and just the 1 in 900 chance scares her because she doesn't want that to happen again this could be their first pregnancy and they know that this information if something were to come back positive that's such like you know like a down syndrome diagnosis or other type of diagnosis we can make in the prenatal setting they know that you know they're not ready for that they don't think that them as parents something that they could pursue so they know that they would make termination decisions and therefore they know for sure they want to do this test and sometimes you know I do work at a faith-based institution so I do have individuals of different religious backgrounds come to see me and they have different thoughts on whether or not this is something that they want to pursue or you know the risks involved but so those are the main things that I discuss and like I said it's different in all factions cancer neurology and you know one of the big questions is if I do this and I have a positive genetic test whether whatever condition it may be is there any prenatal intervention because if there's no prenatal intervention then they're like you know what Im going to carry this pregnancy out I feel no need to risk it so i'll just wait till the baby's born so like I said it's really just dependent on you know availability bias whether they've seen a friend in the past lose a pregnancy due to an amniocentesis whether they have in the past have my miscarriage and just you know how that number sounds I get so many patients that are like oh just one in 900 I thought it was much higher than that and then I get patients that are like that number is scary to me so you know I let them place the value on the number and then we discuss the best options from there [Nanci] Heather that has to speak to you with respect to the number meaning something different the same number the same probability meaning something so different to different people [Heather] absolutely so just listening to all of that I mean you know Ryan was kind of describing some of the key you know elements of my measure and my you know most recent paper and there's some continuing work including a paper I just admitted on genetic counseling and whether people are willing to take genetic testing not in a prenatal setting but so i'll want to chat with you about that but so the core idea of this you know this measure this probability possibility questionnaire the idea is really that so there's two dimensions and Ryan kind of expressed this but just to kind of quickly summarize the idea is that some people will really calibrate their emotional reactions to changes of probability right so they will recognize that one in ten is dramatically different to one in a thousand or one in a million right they will see those differently and they will feel differently about that they will their worry or if it's a good event their excitement will shift you know with those numbers there are some people who are much less you know calibrated to that they see they hear the one right they hear some of your people Im guessing they don't pay attention to the 900 they say one and that's all that matters because I could be that one right so they are more focused on 1 in 900 1 in 10 one and whatever it could still happen to me I could be that one so there are some people who are much less focused on those probabilities right their emotional response doesn't change much with really extremely rare and really common or much more common events there's a second element to this measure which is what we call emotional reactivity to possibility which basically means you know if I just hold probability constant and I sort of hold it constant at an extremely low number and I simply present the merest possibility that something could happen how emotionally reactive to you to that are you that's all it's like a baseline right so some people will have a high baseline and then they'll adjust up as the probabilities change some people will have a low baseline and they will adjust up some people will have a high baseline and then they'll stay flat right some people have a low base line and stay flat so that's kind of the idea with this this individual variability right and it's clearly tied into numeric ability right so there's you know numeracy is really variable some people just don't understand probabilities so Hayley the way you're describing we have to say 1 in 900 and we have to say 0.00 whatever percent right you have to present the numbers different ways to help people's comprehension but even beyond comprehension the way you integrate it into your emotions differs right we can see this right now with covid by the way like this there are people who are looking at you know a positivity rate of point you know whatever a positivity rate of four percent in my community is terrifying and a positivity rate of point four percent to other people in the same community are like whatever Im not masking you know you look at the way people are responding to the vaccines and some people are saying 16 people had the J and J and they had this you know episode the Johnson and Johnson vaccine they had this this crisis and other people are looking at it and saying 16 people out of 7 million you know Im getting my shot so different people are interpreting the exact same numbers in very different ways and it's leading them to very different decisions and I can see that all through what you're describing there [Ryan] I love this work so much it is so cool and especially I was I was going to bring up that it was published in in 2020 so right in covid times and just how incredibly relevant that is and it reminds me of something that we talked about when we were when we were back in college just around like how when we are presented with statistical information and then also like a narrative story right like what we attend to is the narrative versus the numbers and I was wondering if there are any ways and I don't have any answers but I was just thinking of the idea of like having to present numbers to people and like can you give them something else that's comparable to that or can you is there like any way to make that more easily digestible to like remove some of the like number piece of it or like make it easier to attend like I guess it's not attending to it and in the genetic counseling case but like the way you're attending to it things like that and I was just thinking back to like how when we generally think of like seeing stats or numbers like compared to seeing a story right that like what we're gonna pay attention to for our decision making might be more the like narrative story versus the straight numbers and so I was curious in either like the research or applied settings if you all have come across that or like Hayley Im just thinking if when you're discussing that with patients if there are any ways that you like reframe things I don't know how what the narrative version of that would be but I was just curious in that direction [Hayley] well that's an interesting question and Im not sure if Im like specifically going to speak to your question but just you know like a big part of our job are those numbers and conveying those numbers and making them realize this is what studies have shown us but in cases where women might be on the fence and having a hard time deciding like again I don't like to persuade anyone which way or the other but you know sometimes I say you know these numbers show that it's unlikely but there is a chance so you know while we're trying to get away from numbers and try to explain it elsewhere I might throw in words like that then I you know I like to tiptoe around those words because like I said that might not seem like unlikely to someone [Ryan] it's almost like a trade-off of bias if you're adding that narrative content in in some way because like you have to frame it in a particular way so that seems so difficult to convey the numbers in a completely unbiased way but then also like can really be able to like position it for people [Hayley] yeah and you know when women do talk about their backgrounds like I you know Ive mentioned that women have had miscarriages in the past and they say you know Im just you know just hearing that there's a chance I don't want to experience that again I don't want that to happen I don't even want a chance then from there it's my job to be like Im hearing you this sounds like this isn't the best decision for you based on what you've experienced you know I feel like that's a good decision for you let's move forward with not pursuing this testing so even though it's not directly in their decision making I do try to once they feel like they've landed on a decision confirm that that's correct for them [Heather] you're validating the direction they need to go [Hayley] yeah normalizing their decision [Nanci] when I think about some of the things that are just coming up about this idea of narrative it's not so much you are ethically not giving the narrative right you're focusing on the statistics [Heather] you can't do the persuasive speech yeah [Nanci] we know that there might be other things you know there's all these individual differences and heather can certainly speak to that so can you Hayley but it's maybe providing that opportunity for your patients to tell their narrative so that you're informed for you like what you know so what are the things you want to know where your patient is coming from so they can tell their narrative also going back to some of the things Heather was saying before about you know why people how they make their decisions and just getting to know what their baseline is how reactive are they to that possibility just knowing who they are so the more you get to know them obviously the more you'll be able to help them in this process so I think narrative is important but who's narrative [Ryan] oh I love I yeah Im really glad you said that because I was not trying to give you an ethical trap there but I love how Dr. Weinberger reframed it too because and what you're saying there is that like you can't give a straight narrative but you can you can listen to what they're giving you to help inform their narrative right and like and then confirm and validate their experiences and sort of positions in that realm yeah [Heather] i'll just throw in you know in the literature around you know sort of numeric communication you know there is first of all this tension between persuasive and informative communication and so Hayley's in this world where she has to very carefully convey information without trying to be persuasive this is truly an individual's own ethical choices to make and yet you still have to and so yes that narratives and images and things like that are way more compelling to people than stats and numbers there's no question so when you're talking about health decision making where you are trying to persuade people of things for their own benefit like don't smoke or you know get the covid vaccine or something like that those are you know tools that are really important right but when you're just trying to convey unbiased information then there are other tricks to pay attention to you mentioned even Nanci or someone no Hayley I think it was mentioned just words like unlikely right the word unlikely is might seem like it's the same information as one in a thousand but that depends on interpretation and so yes cognitively people interpret the you know people interpret gist better than they interpret details so people internalize and understand rare or likely more than they understand one percent or you know without you know 0.000 percent but again there's a layer of judgment you know with those words another thing that's you know often used in decision aids I know and I don't know Hayley if this comes up in your work but just like pictograms where you basically show a physical array you know so that instead of saying one out of 900 or point blah blah percent you show a picture with a thousand little images maybe it's dots maybe it's little you know little pictures of people or something and you show 900 dots and one is a different color just to convey the information right and that I think can help when people have more difficulty just comprehending the numbers themselves and I don't know how much this comes up in your work but I know that's something that's there's a lot of research on that in decision aids in general [Hayley] yeah and you know I know this program is offered in multiple states but here in California we have the prenatal screening program so it's not considered diagnostic it's a screen so they give risk assessments so it's a blood draw from the woman and it looks at specific hormone markers produced by the pregnancy and then it calculates it and gives us a risk assessment of conditions like down syndrome and in the state of California the cut off for a positive result is one in 150 and so Ive gotten women who've screened positive 1 in 149 and they come in and they're terrified they're like they think this is a positive result and so when I bring them in one way that I like to say even though it's not a picture I say you know out of 149 women with this same exact result that you just got only one of their pregnancies will be affected with down syndrome so even though it's not using a picture just kind of making them picture 149 women and that this means that only one of them will be affected down syndrome kind of puts it into perspective that okay this is just a risk this isn't a diagnosis what can we do from here [Heather] I think that's really that language you just used this is a risk not a diagnosis is really hard for people to interpret right the difference between a 1 in 150 1 in 149 chance of something happening to me is very different than you have this condition or your baby has this condition and that's not easy for people to internalize [Hayley] right [Ryan] that also made me think of and Im trying to remember the direction but around maybe it was testing or screening for breast cancer I think I feel like we talked about this in your class Dr. Lacey maybe but just like false negatives and false positives like that and just how difficult that is to yeah to sort of internalize that even if you have a positive like it might or I don't remember I don't remember which direction it went exactly but [Heather] i'll give the like one second summary you know I won't go into the whole lesson but I know exactly what lesson that you're talking about but we're basically talking about how diagnostic tests work and how base rates are relevant right and false positives are relevant and so people will often mistake so the specific error you're talking about is the difference between these two statements the probability of having a positive mammogram given that you have breast cancer is very high that's like 90 percent if you have breast cancer there's a 90 percent chance that a mammogram is going to pick it up so it's a very accurate test in that regard however the probability that you have breast cancer given a positive mammogram is very low it's not a very accurate test in that regard it's like thirty percent so that means that you know sixty you know seventy percent of the time when you get a you get the call back and you are told you know you just got a positive result on your mammogram 70 out of 100 women who get that call are fine but they perceive it the other way around they know that this is an accurate test they go online they see that it's a 90 accurate test and they think that that means that there's a 90 chance that this is really cancer and it's not it's a 30 chance which is not to say that these tests are not important screening devices they lead you to additional you know additional screening and additional decision making and better information better diagnostics but there's a lot of distress that comes with that and frankly there are also high risk procedures that sometimes come from those false positives and so that has actually led to changing guidance on how often people should get these tests so all of these numbers are really hard to wrap our heads around and what you may even recall Ryan from that lesson way back four years ago it five or whatever is that even doctors screw this up yeah doctors will you know look at this and they will say oh there's a 90 chance you have cancer and it's not true so it's humans are not easy intuitive statisticians we misunderstand misinterpret distort misremember these kinds of numbers all the time [Nanci] I Im thinking about that and how I didn't know that about the false positives I mean I knew it was off but I didn't know that and Im also just thinking about that experience of getting a mammogram and how there's there I don't really feel like there's that much actual information given about if you get a call back how to the context and how clinical how helpful it would be to have that upfront clinical support for that phone call that could happen that happens all the time for people [Heather] absolutely I mean Im in my 40s Ive had my falls positive already Ive had the experience of getting the you're gonna have to come back and do a stage two you know test and I had all this background information that helped me stay cool but even with that background information it was still stressful and I think about so many women who don't have that information and don't know what those numbers really are what they mean even if they have access to the numbers and it would be a very hard experience you know waiting those few weeks for that second round test and then the next set of results etc. is really tough when you don't understand those numbers [Nanci] I guess Im also thinking that the like the kind of work that you do specifically Hayley you know just sort of the idea of helping people process this information is fantastic this in your case prenatal testing and relevant screening and diagnostics but just this idea of people need guidance you know we need help figuring this stuff out so I think it's so valuable for not only just what you're doing but you know really other areas of the clinical world could use that kind of support that I don't think is there [Hayley] definitely and you know time is valuable to certain medical professionals so that's kind of how genetic counseling came to be is just that we need someone to dedicate an hour to sit down with someone oh sorry oh my screen was blank sorry so we needed someone to dedicate an hour or so to go over exactly what can come back from this test we do a lot of pre-test counseling just so they're ready for the possible results because it's not it's not always just a straight yes or no sometimes there's a called variance of uncertain significance that means they found a mutation but we haven't seen enough times in the world to know if this is disease-causing or not and so we do a lot of talking to make sure that they understand these other results that can come back these are the percentages of the times we see these results this is what we'll do with each result we'll bring you back in we'll discuss it further so it's never just a one and done which I appreciate and I feel like when I encounter individuals who don't have the pre-test counseling but come to me just for the after counseling I can see that their perception is much different than individuals who have received the pre the pre-counseling the pre-testing counseling and then you know just to talk about different other genetic counseling spaces there's the neurology where it's very much different than prenatal a lot of the neurology conditions there's not always interventions and so it's a lot more scary to learn about such as a family history of Huntingtons Disease, Parkinsons, things like that where in the prenatal setting if I see a family history it's my job to talk about it and say that there are available testings and a lot of the times in that setting I get women who are like Im not interested in pursuing them whereas other you know cancer histories where we know we you know we identify a mutation that puts you at risk for this cancer this cancer and this cancer here's our screening here's our intervention they're more likely to get it because they have a plan for them after we receive those results so in that space it's a little different and pre-test counseling is actually so important in the neurology world especially for a family history of Huntingtons Disease they actually have to you know a part of just what genetic counselors to decide law we have to see them twice before they do their genetic testing just to make sure we meet them once to describe the test make sure they're in the right headspace and bring them back again and discuss it again and go over okay they were going to draw blood is this something you still want to pursue so pretest counseling is so important to help individuals through the testing process because if yeah if you don't understand exactly why you're coming in a second time or you're not prepared for every single result that can happen it's scary to hear anything other than you're negative so yeah just speaking in that pre-test counseling is so important especially in you know the more severe conditions like neurology conditions Huntingtons Disease [Heather] I have experienced that on the patient side so a couple of years ago I mentioned that I did a study looking at my measure with genetic counseling it was inspired by an experience we had in my family so my son a little boy at the time was showing his the doctor picked up on caf-au-lait spots on his on his body which are a first potential sign of a pretty serious condition called neurofibromatosis and it's a neurological disorder that basically causes a little benign tumors all over the nervous system and it can cause severe deformity it can cause neurological problems learning problems vision problems it can increase risk for cancer I hope Im getting all that right Hayley that's my interpretation of it and so the first sign was there and so we went and we talked with genetic counselors and we ended up deciding to do genetic testing but we had to do a significant amount of early conversations to make sure we were clear on what we were and we're not going to learn and in the end what we learned was not perfectly satisfying because that's the nature of a lot of these testing right we found no indication that he has you know the mutation on the NF1 gene that would cause this disease thank god on the other hand we were also it was explained very carefully to us that this disease sometimes shows up without that mutation so there may be unknown mutations on unknown other genes that they don't yet know to test for again I hope Im representing this accurately but that we had to understand that they could they could give us some reassuring information they could reduce our expected probability of him getting this disease but they couldn't absolutely rule it out right and that's where we stand so as he gets older they'll be looking for additional signs to make sure it doesn't appear clinically so far so good you know yep but this was something that we had to decide first of all and let's be clear like you said this is something without interventions right there's no treatment there's no prevention there's just knowledge and so did we want to you know there was no risk associated no real risk with the test itself it's not like an amnio but did we want that information and we went ahead and said yes but there are lots of people who don't if there's nothing they can do about it they simply don't want to know if they can't absolutely rule it out they don't want to know and a little spoiler for the study we did it was not perfectly true to life but a scenario that was modeled after NF1 and asking people if they would want to get the testing or not and then we modeled that with the PPQ and what we basically found was that that emotional sensitivity to probability did predict the interest in the test but only in certain cases only when it could only when basically it with the way we had structured the scenarios when it could totally rule it out which was false right that we know that's not the way it actually works but just to test psychologically what was going on we get conditions where you could either go from a low probability to a lower probability or from a low probability to no probability and we found that people wanted the test when they could use it to totally reassure themselves to rule out this terrible outcome but when all it was going to do is give graded information they didn't want it or this I shouldn't say that this individual difference didn't predict it also didn't predict desire for the test when the when the probabilities were high so the people who actually were at highest risk it wasn't associated with their desire to have that test so this is kind of changing the way we're starting to think about what this measure actually even means I used to think of it as an indicator that someone was really data focused clear-eyed they want the information no matter what they want the data they want the numbers I don't think so anymore Im starting to think that what this really is this tendency to emotionally integrate probabilities into our thinking Im starting to believe that it's more it's another tool we use to reassure ourselves we use it to rationalize what we already want to do the same way some people when they feel under threat and they feel scared and they want to be reassured that things are going to be all right some people will open the bible some people will meditate some people will you know whatever other people will turn to data, statistics, and science and they will convince themselves with that that it's all going to work out but like everybody else there's a little cherry picking involved right I do it when it makes me feel better not when it won't and that's been a surprising revelation for me about what I think this particular individual difference is I don't think it's just about people some people are more rational in their decision making than others I think it's that some people use different tools to rationalize their decision making sorry I went on a rant and I just gave away like all my cool results that haven't even been accepted yet [Ryan] and it sounds like almost to cope with like the uncertainty like do you want to all of that is so interesting makes sense to me and it what when you're describing those tests too especially the rationale around like if you're going from risk to low risk or no risk that that difference when you were talking about your experience with your son was exactly what I was thinking of sort of it it's just it's just maybe just agonizing almost to think about because then you still have that chance in the back of your mind so it's still something you can continue to worry ruminate about and [Heather] yes so someone who knows a lot about rumination [Ryan] yes and tends to ruminate as well [Heather] yeah unless you can get it to zero that makes a lot of sense yeah and I think that's the that's the scary thing with probabilities is that you can't really get almost anything to zero like almost nothing goes to zero and yet that's where we feel comfortable that's what we really want I mean again this scenario I did was false because this test can't bring it to zero but psychologically that's what when we're looking for it [Hayley] yeah and that's always an issue because you know I get patients who say with this genetic test does that mean it's 100 percent and I you know in the world of genetics nothing's ever zero percent and nothing's ever 100 it can be 99.9 but we can never reassure them that there isn't something that we're missing something that hasn't been categorized yet characterized and then you know certain situations where there's just human technology error things like that we can't rule out sample switching things like that very rare just to the world it's very rare yeah so I know that that you know they're looking for that reassurance and I can never give them sorry like I can't say 100 percent our best option it's going to give us the most information available but nothing's ever 100 or 0. [Heather] it's also just in terms of you know the technological error of things like that that you're describing I mean one of the things that I learned in this writing this paper is just how unbelievably sharp the curve is on genetic medicine right that I mean we all know like you were saying at the time that you discovered this field it was a baby right the field was new and now it's more established you know but the amount of change in our knowledge about you know about the human genome and about its relationship to disease etcetera is like through the roof I read some statistic there's something like 75,000 genetic tests that exist at this point and dozens more come out literally every day literally every day and so when you're talking about the error yes human error happens in every test not because it's a sloppy you know practice but because humans are humans and when you think about the escalation of the science what was known when you saw a client three months ago might be different than what's known about you know genetics today I mean it's that fast [Hayley] yeah genetic counseling 20 years ago was just going off of statistics from what they knew there was no specific genetic testing or regular genetic testing for very rare genetic conditions but since we've been able to characterize the genes associated the genetic mutations we can give more accurate results but like I said it's like so forever evolving and growing rapidly and so you know when we get variants of uncertain significance when I was talking between where it's in between you know the labs update that often and when they know for sure you think this is benign or we think this is disease causing they give us a call to update us and we get calls like that all the time to let us know that okay we can finally characterize it now so it's forever growing [Heather] so do you reach back out to clients when the science moves forward in a way that their previous results now have more meaning you actually reach back out to clients [Hayley] yes and that's part of the counseling when we receive one of those vus's variance fence and significance is we let them know you know this could be changed in the future the lab will let us know and we will contact you sometimes we ask the patients to every year check in with us to see if there has been any reclassification because sometimes it's not automatic with labs we have to reach out and check in and so we do encourage patients to like annually buy a newly reached out and check in on their genetic test results if anything it's [Heather] so you know complicated that people are in this process because of uncertainty and the desperate desire to re resolve uncertainty they're not going to they'll never resolve it they might reduce it sometimes they'll resolve it when they discover that yes this disease has manifested but that's not the resolution they're looking for you know so they're you're going to have you know continuing uncertainty almost no matter what it's just reduced uncertainty and then the science itself has so much uncertainty around it because of this rapid escalation that you know just because you get a result today doesn't mean it's going to have the same meaning in the very near future and that too is just such an intense layer of uncertainty for patients to absorb and for you to coach them through I mean your job is to help them navigate all of that in an unbiased way but in a comforting way and that's quite a task [Hayley] yeah it definitely can be and we do have long conversations so you know it's a space for them to ask all the questions but you know just speaking on that you know forever growing aspect you know BRCA 1 and 2 those genes are well characterized we know specific mutations and what ethnicities they occur most in and so I get a lot of individuals who say I myself had breast cancer at 35 but don't worry I had the BRCA 1 and 2 tests and Im like that's great but actually within the last you know five ten years we've discovered 15 new genes that can predispose someone to breast cancer when they're not working correctly and so you know I always hate throwing that at them but it's like you know just for [Heather] you to know you have to have the right information at least [Hayley] yeah and so it's not what they came in to talk to me about in the prenatal setting but you know it's my job to let them know you know check in with the same genetic counsel you did for your cancer testing maybe they can discuss further cancer testing if you're interested [Heather] right [Nanci] I mean Im really glad to know that that there are people guiding patients and part of the guidance includes stay tuned stay tuned not only about what you're here for but for some other things and it's something that we just generally need to know some more I know we need to wind down a little bit in this wonderful conversation and Im hoping you know I think that we've talked about some of the barriers and maybe some ways to overcome barriers to have people make some difficult decisions I mean are there things in their view you would like to know more about you know you know what questions maybe a researcher could be looking into you know to understand your patients better or you know maybe Heather you'd like to know more about the patients themselves is there any last question that you guys have for each other before we need to wrap up [Heather] I so I will say for myself I do this research knowing that this thing that Im measuring is telling as far as our psychology about how we process this information and hoping that it has some utility in how actual patients can make decisions about their you know their health and hoping that it helps you know medical practitioners communicate with patients about their health but I also worry that it just falls into the void right and that it never makes it to that level of practice and so I don't know if this is a question this is more of a rhetorical question or a question that Hayley can actually answer but I mean if you know something like this if you know that patient some patients you know internalize probability information very differently than others if you know that they comprehend probability information very differently than others do you feel like that has an impact in the way you communicate with those patients do you feel like it has any impact in the way you can help those patients navigate their hard choices [Hayley] yeah you know that's something in the genetic counseling field we're forever studying but you know the part of just the discussion before offering testing and helping them navigate that decision making we do take a family history so we do get a good idea of what they've been through already [Heather] yeah [Hayley] so sometimes that does guide whether I approach a subject very gingerly or you know certain things maybe you know in the phrasing things differently but we do try our best to just you know keep our biases out and I don't know we're not discussing placing biases and things like that but just knowing that family history beforehand really helps how we might approach a subject but like I said that one is you know will probably forever be studied in our field of how to most effectively communicate with patients from different backgrounds socionomic economic status religion things there's so many factors that can play into someone's decision-making ability and process [Nanci] yeah I can think of more factors and I feel like I have more questions and I know we have we're short on time Ive learned so much already in this conversation I want to dig in deeper outside the conversation you know we really appreciate your time and the conversation and revealing so much to us Ryan Im sure you want to add as well [Ryan] yeah well I really one of my big takeaways from this conversation is sort of how I hadn't thought about how useful this role of like outside of medical doctor counselor who can help you sort of navigate the information and validate your decisions in that process and I think that the how crucial that is in all of these different potential domains like we were talking about mammograms as well it seems like that's something that I would love to see done more in in different settings because it seems like this is just such a fundamentally difficult thing as humans to process and process like you're saying like the same way and based on your history and everything else like you will be processing it differently and then based on your emotional sensitivity to probability and reactivity to the possibility you'll be probably designing differently thank you had to think about it still so I think that the individual difference element is so fascinating and then also just the application and the need to sort of recognize how difficult it is to process number information especially when you it's processing number information and it's not just processing number information it's like processing number information in the context of what it means for potentially like your life or death or your offspring's life or death and I think that that additional context makes it so difficult if you don't have someone who is there to support you and be there at every turn so I that was my big takeaway is just how important both the research and application side of this kind of work is and so it's really cool Hayley to hear about what you're doing now and just to go through all of the ways that this research can be applied because I do think Dr. Lacey that this can be really helpful in clinical settings across so many different domains and i'll be really curious just to see how you continue to apply it and look at it in different domains [Heather] I just have to agree and echo what you're saying is it's amazing that there is such a field as genetic counseling it's amazing that the medical field has grown this you know specialty for communicating and you know you know helping people to understand and interpret you know this really complex biological and numerical information but my god wouldn't it be great if we had that for people dealing with cancer diagnoses and for people who you know are at risk of heart disease and for people who are you know there's every medical decision in front of you entails risk every medical decision entails complex biology that you might not be prepared to understand and wouldn't it be a wonderful world if every hospital had a an office of you know scientific counseling or you know something to help people interpret this stuff [Nanci] health decision making [Heather] right health decision making department exactly [Ryan] it makes me think of like almost like doulas or something just someone who is there an advocate for you to help you process these things and then also like not guide decision making but aid and affirm decision making I guess and just how useful it is to have an advocate in any way there who is not advocating for anything in particular other than you and your decisions [Heather] yeah absolutely [Nanci] that's great that's a good wrap up I think we better call it all right a conversation and it's been a wonderful conversation thank you both so much [Heather] this was so much fun it's so cool hearing about the work you're doing Hayley it's so awesome seeing the you know Ryan and Nanci the way you've been putting this together and watching your progress you know through grad school run it's just been really cool continuing to be connected to you guys so thank you for that yeah [Hayley] thank you I very much enjoyed this I enjoyed being back here and talking to you know some of my favorite professors and seeing Ryan again so I very much enjoyed this and I and I look forward to you know the final report yeah [Heather] thank you all [Nanci] right be well [Heather] you too