What happens when women receive a prenatal diagnosis of Down syndrome? How does that diagnosis affect those women and their families? How does it affect our whole society? Stephanie Meredith joins Amy Julia Becker for a conversation about her new report on the bias doctors have when giving a prenatal diagnosis of Down syndrome, including:
- The landscape of prenatal testing
- How doctors approach it and what they could do better
- Why these conversations matter outside the Down syndrome space
Stephanie Meredith is the Director of the National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute and co-author and lead author of numerous studies, including “The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing” in the Disability and Health Journal. In addition, she is a 4th-year doctoral student at Georgia State University with a focus on disability and health and the mother of a 23-year-old with Down syndrome and two younger daughters.
On the Podcast:
- Report in the Disability and Health Journal
- TIME: Doctors Don’t Know How to Talk About Down Syndrome
- HHS and Disability Discrimination
- NYT: When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong
- S7 E3 | Netflix’s Down for Love with Robyn Paterson
YouTube Channel: video with closed captions
Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.
Amy Julia (5s):
What happens when women receive a prenatal diagnosis of Down syndrome. How, does that diagnosis affect those women and their families? How? does it affect our whole society? I’m Amy Julia Becker. And these are some of the questions I’m asking. Stephanie Meredith today on Love is Stronger Than Fear Stephanie Meredith is the Director of the National Center for Prenatal and Postnatal resources at the University of Kentucky’s Human Development Institute. She’s also the author of Understanding A Down Syndrome Diagnosis. She’s a fourth year doctoral student at Georgia State University with a focus on disability and health. Stephanie is also the mother of a 23 year old with Down syndrome and two younger daughters.
Amy Julia (49s):
I will also add to her Bio Stephanie lives with a few dogs and you will get to hear them say hello in the background of this episode. As some of you already know, October is down Syndrome Awareness month and one place where we need more awareness around down Syndrome is within medical spaces. I had a chance to write for time last month about a new report that was authored by Stephanie and a few colleagues, and this report showed that most doctors are biased in the way they offer a Prenatal diagnosis of Down syndrome. And, that this Bias results in less Comprehensive care for pregnant women. So Stephanie is here today to give us a primer on the landscape of Prenatal testing to tell us how doctors approach it and what they could do better and to explain why these conversations matter even outside the down Syndrome space.
Amy Julia (1m 42s):
I’m so glad that you get to be here with us today. Well, I am sitting here with my longtime online friend, Stephanie Meredith, and I will say that someday I hope we will meet in person. I don’t think we’ve done that over the course of the past, you know, couple of decades. But for now I’ll just say welcome to my screen.
Stephanie (2m 5s):
Oh, well thank and thanks so much for having me.
Amy Julia (2m 8s):
Well, Stephanie, I think you know that the immediate reason I asked you to be here today is because you authored a study along with a few other people about Prenatal Diagnoses of Down syndrome. And I do wanna talk about that study. But before we get there, I would just love to introduce you to our listeners in more general terms. So I was wondering if you could just tell us a little bit about yourself and about your family.
Stephanie (2m 31s):
Sure. So I am the mom of three kids and my husband and I have been married, gosh, 27 years now. It’s been a while. And thanks. And my son, I, my oldest son was born with down Syndrome. He’s 23 years old. And then I have 21 and 16 year old, almost 17 year old daughters. And I was 23 years old actually when I had my son with down Syndrome. I had a Postnatal diagnosis about four hours after he was born. You know, the doctor, our doctor was pretty matter of fact about it. He came in and he said, you know, he is got this and this and this symptoms of Down syndrome and, and and our hospital though actually the next day had this pretty progressive program at the time where they had parent support staff who came in almost immediately, you know, after the child was born.
Stephanie (3m 28s):
He was born on a Super Bowl Sunday, so they weren’t there the day he was born, but they came in the next day and, and they provided us at the time the book Babies with Down Syndrome. And this mom had a child with down Syndrome and showed us a picture of her son on a bike. And for us that was just such a normalizing moment to realize life could still be fun. And, and I think that was such a great program at the time. They actually had three women on staff at the hospital who did that one had a child with down Syndrome, one had a child with hearing loss and one had a child with cleft lip and palate and they all served families whose kids were in the nicu. So. that was, that was my first introduction to mom motherhood.
Amy Julia (4m 11s):
Wow. Gosh. They’re like so many questions I wanna ask you just from that, let’s get back to that moment. ’cause I do wanna ask you more about it. Could you also just give us a little bit of a, like where I think particularly for Aundi, who is your oldest and is now you said 23, right? Yes. So he’s the age when you had him. So what does his life look like now?
Stephanie (4m 33s):
So he’s actually got a very busy life at this point. He is auditing a couple of classes at our local college, and he’s specifically auditing classes in photography and web design and bus. And he’s an intro to business right now, And. That’s because he also has a photography business. He’s a very talented photographer. And I always think it’s really important to tell people that, you know, he’s got this really amazing talent and he still struggles with some, with academics. Those are, you know, if Aundi were born without down Syndrome, he would be the jock and, and it would not be, academics would not be the thing that excites him the most.
Stephanie (5m 18s):
Yeah, yeah. And so he’s also a lacrosse coach at the local high high school and he’s an assistant coach and he works at our local Publix grocery store where he got the job himself.
Amy Julia (5m 32s):
Well, I love hearing about Aundi and I love, I’ve loved over the years just because you are a mom who has a child six years older than our daughter Penny, you have been one of the people who I have really appreciated, you know, in terms of sharing on Facebook and obviously being able to ask questions, but also just watching your life and being able to ask, not just ask questions, but kind of envision. And it’s so funny ’cause Penny and Aundi are very different. Like she is the last person you who would ever want to like coach lacrosse, for example. She actually loves books and reading. And I think it’s important for us, you know, to note just the diversity among our, our two kids, much less among the population of people with down Syndrome in general.
Amy Julia (6m 16s):
And yet it’s also just really fun, as you said, to be able to kind of envision what’s ahead in life with a disability and not seeing that as simply a pronouncement of what can’t happen. You know, that there are all sorts of possibilities, even though they will be pretty specific to the kid and the family, and over time the adult who is, who’s, who’s there. So anyway, thank you for being that person along the way. Another topic that you have been a go-to on for me though, is in this whole realm of Prenatal testing, Prenatal Diagnoses and just really being a gentle but very knowledgeable and kind voice in the midst of a lot of both confusion and energy and, you know, around those topics in our culture.
Amy Julia (7m 9s):
So I wanted to start just by asking you like, how did this become your professional life? Like how did you become the person that I would be saying, can you come on a podcast with me and talk to me about Prenatal Diagnoses?
Stephanie (7m 20s):
Sure, yeah. I think for me, I actually, because I had such a great diagnosis experience, I kind of just assumed that that’s how it was for everybody else. And so when Dr. Scott COE’s research came out in 2005, and it was uncovered that a lot of families were not having very positive experiences, I realized that what I, I really wanted everyone else to have that kind of support and information and guidance that I had. And, and I think too, I had gotten involved probably after Aundi was about one years about one with getting information to Russia for babies who were institutionalized and trying to empower parents there within, with more accurate UpToDate information about outcomes So, that they could make more informed decisions about raising their kids.
Stephanie (8m 17s):
And so when, when that research came out from Dr. Scott Co, my husband and I, he is a designer, I am, I, I was a technical writer at the time and we thought, gosh, you know, could we put together a resource that clinicians will feel comfortable handing out prenatally because we knew that they were gonna be very protective of those patients. And so we knew that everything handed out to them would need to be very research based as far as all the psychosocial claims that we would make about down Syndrome. And so we thought, well, you know, we put something together that they would feel comfortable giving to, to their, their very vulnerable clients in that moment.
Amy Julia (8m 59s):
So let’s, yeah, before I ask you specifically about that resource, which I wanna do, can we back up a little bit and just talk about the history of Prenatal testing and screening? So there’s, you know, Prenatal screening has changed even over the course of, you know, our lifetime for sure. And I’d love to hear you speak to that a little bit, but then also talk about like what is the purpose of it, who gets it, how has it changed? Like whatever kind of overview information you think someone would need to know to understand the significance and importance of the resource that we’re gonna talk about. Could you just give us a little bit of that big picture?
Stephanie (9m 33s):
Yeah, absolutely. So you’ve got screening technology, which basically takes the blood sample from a pers from a pregnant woman and says maybe what the chances might be that she’s going to have a baby with, you know, any number of different genetic conditions. Yeah. And And, that test can be more or less accurate depending on the condition. And that was also in the news the last year. Yes. And so yeah, the New York
Amy Julia (10m 2s):
Times did report on that. I think that was pretty shocking, right. As far as just women really not understanding what the meaning of these tests were. Right?
Stephanie (10m 13s):
Yeah, absolutely. And I actually have a family member who was pregnant at the time that found out that her baby had increased chances for Turner Syndrome. And when she got those results, she came to me. But in her experience, the, her clinician did not end up letting her know that it was chances and what the positive predictive value for the test was. And so, and when I say positive predictive value, that’s a concept that’s really hard. Took me a number of years to wrap my head around.
Amy Julia (10m 47s):
It’s basically I’m still wrapping my head around it. Totally.
Stephanie (10m 50s):
Yeah. Yeah. Because when people tell you they’re that a test is 99% sensitive, it means that it picks up that condition and 99% of the population, but it doesn’t mean that it’s necessarily 99% accurate for you. And so they have to weigh a lot of different factors to figure out whether it’s accurate for you. So your, for example, your age can make it less, if you’re younger, it can make it less likely that it’s accurate for you. Hmm. And so in her case, there is a positive predictive calculator on the internet that you’re able to access. And we plugged in her numbers and when we actually looked at it, her chances were only like 23% that it was accurate for her.
Stephanie (11m 33s):
Right. And then I also gave her information about Turner Syndrome, and she was like, well that seems like something that in our family we could manage. And so, but she hadn’t been given all of that information to really understand Right. What the test meant and what the condition was. And so there’s that screening component and when Aundi was little, when Aundi was born, that screening was much less accurate than it is now. Right. But it’s still not a hundred percent for any of those screening tests. In order to know with almost a hundred percent certainty, you would need to get an amniocentesis or a C V S, which are considered diagnostic testing.
Stephanie (12m 15s):
And so those are the two. So can I just interrupt
Amy Julia (12m 16s):
You for one second? Like with the person who came to you with the potential diagnosis of Turner Syndrome, if she had not talked to you, would she have thought there was a 99% chance she was having a baby with Turner Syndrome?
Stephanie (12m 31s):
Oh, she thought it was pretty certain when she got it and her baby did not, she thought it Syndrome.
Amy Julia (12m 35s):
Okay. So she thought it was certain, came and talked to you, you did the calculations, it’s 23%, which is still significant, right? Like it’s not nothing, but it’s very different than 99%. And then she went on to have a baby who did not have Turner Syndrome.
Stephanie (12m 48s):
Amy Julia (12m 49s):
Yeah. Okay. I mean, that’s just such a, like a one, I mean, wonderful in the sense of like clear example of why these tests can be misleading. And then to your other point that once you gave her information about Turner Syndrome, she was like, oh, okay. Like we could, we could handle that. Like either way I can carry forward in a different way than I might have with the information I was originally given. So anyway, thank you for that example. I’ll let you keep talking now.
Stephanie (13m 17s):
Yeah, no, I, I, I think that, you know, we’ve seen over the years now that there’s been a huge uptake in the new cell-free D n A test And that was released, you know, around 2011, 2012 is when it really exploded onto the scene And. that is the more accurate blood test that a lot of people are utilizing now when, you know, before that it was the quad screen test alpha fetal protein, but now pretty much, you know, the cell-free d n A is what’s largely used. Yeah. Although the other tests are still the, they’re called now, biochemical tests are still what are used for detecting spina bifida and some other conditions.
Stephanie (13m 60s):
So, so there’s still in use, I, I think what’s important or what we kind of found that was important with our research is that about, you know, that the majority of people were really getting the cell-free d n a test, but then, you know, I, I’m gonna have to look back at the numbers, but I think it was only 40 to 60% that were getting the amnio at c v s. You have 71% of parents who had a child with, who had a baby with down Syndrome and received a Prenatal diagnosis between 2016 and 2020. One of those 71% said that they got cell-free d n A testing, but then only about 40% went on for a diagnostic test.
Stephanie (14m 44s):
So a lot of people are stopping at that point when they’re continuing pregnancy.
Amy Julia (14m 49s):
And tell me what that means, like, is that problematic in any way? Is it be, does that demonstrate that people think of this as conclusive when it’s not necessarily, or does it mean they said, okay, I might be having a baby with down Syndrome and I’m choosing to continue my pregnancy?
Stephanie (15m 6s):
I think it’s the latter. What what’s ending up happening is they’re like, okay, well I, I mean some people may have a misunderstanding about it, but what we’re seeing largely in internet forums where parents are being supported is that they’re getting that test. They know that they’ve got high chances that the baby has down Syndrome, but they don’t want even that slight risk of miscarriage with an amnio or C V s. And so they’re like, I’m gonna stop right here and kind of proceed as if my baby has down Syndrome.
Amy Julia (15m 37s):
Yeah, And, that was actually a different story. But for us, because it was the quad screen, that quad screen that you described earlier, we did have a higher than expected chance for my age of having a baby with down Syndrome, but said no to an amnio because we knew we were not going to change our decision about whether to continue the pregnancy. We were still surprised when Penny was diagnosed because our doctor and you know, technicians and everyone had said, there’s no way this baby has down Syndrome. That’s a different story. But my point just being, I was definitely one of those women who was like, well, I don’t need more information if it’s going to put my baby’s life at risks.
Stephanie (16m 13s):
And then there are some people who, you know, maybe because of a past pregnancy loss or you know, something like that, they wanna know for sure because it gives them peace of mind e even for preparation, whether they’re, you know, even if they’re continuing a pregnancy. So it’s just such a complicated value-laden decision. But, but there are many reasons why people make those different choices. And I think what’s important for me though is that families need to get information and support after getting screening results. And that’s also what the people in our study said was their preferred time to get information by a large majority, almost 90%.
Stephanie (16m 55s):
So that’s when they want information and not to wait until after diagnostic testing.
Amy Julia (16m 60s):
I see, I see. Okay, that’s really helpful. And I think I wanna add in here, because you’ve got essentially, and we’ll talk about this more in a minute, after a screening result there, after a screening result, though, the conversation about termination comes up, right? I mean that’s what comes up immediately with a clinician, is that correct?
Stephanie (17m 21s):
Yeah, I think it does come up at that point. Although ACOG recommendations specifically say that, you know, making permanent reproductive decisions should not be done until after diagnostic testing.
Amy Julia (17m 33s):
Okay. But you’ve also got an issue. So if you or a pregnant woman who’s getting a cell-free d n a test, which is just a blood test not invasive, that would be during your first trimester of pregnancy. And then if you get a screening result relatively, you know, soon thereafter that suggests your baby has a high likelihood of one of these genetic conditions, you then would have to wait for a diagnostic test. Is that correct?
Stephanie (17m 58s):
I mean, that’s the recommendation at this point. But honestly, some of the, some of the more re restrictive repre reproductive laws are making that more likely that people may be making decisions based on screening because they might not have time to get a diagnostic test And, that clearly wouldn’t be what even ACOG would prefer. They would like for people to know for certain before making those sorts of decisions. But because of the, you know, patchwork that it is that, that we have right now, people may be making those decisions based on timing as a, as compared to accuracy of the test.
Amy Julia (18m 38s):
Right. Yeah. So I mean, again, so many threads we could pull here. I’m not gonna pull ’em all because I wanna make sure we get to talk about some of these other things. So can you just describe the work you’ve done with the letter case booklet? Is that booklet the right word? Like, I just would love to hear you describe what it is and also talk about whether yeah, just who is supportive of it, what’s been controversial about it, where it gets used, what you’ve seen happen as a result of it. Just give us again, kind of a big picture view of letter case.
Stephanie (19m 12s):
Sure. So we ended up creating these books that were intended for booklets for a Prenatal audience. And we submitted it to the, the Kennedy the, at the time there was a first call Kennedy Foundation grant. And those, they reviewed it and then we ended up submitting it to the down Syndrome Consensus Group that included representatives of American College of Obstetricians and Gynecologists, national Society of Genetic Counselors, the major down Syndrome organizations. And they ended up giving us feedback too. And the idea behind it was that there would be a resource that they could all support and be comfortable with the content to be provided to families immediately upon receiving a Prenatal diagnosis.
Amy Julia (20m 1s):
And just to kind be clear there, just sorry to interrupt you, but essentially that’s like what might be seen as quote unquote like two sides of the issue that you have, like all the medical professionals who, and all of the kind of Down syndrome advocacy people, and they might be seen to be at odds over some of the choices that women might be given. And yet you’re trying to provide a resource that everyone can say, you know, I can, I can support having this in the hands of people right after a screening result comes back.
Stephanie (20m 31s):
Absolutely. Because I mean, you had at the time a lot of suspicion, you know, between some of those different groups Yeah. Where, you know, you have families feeling like maybe they didn’t have the best diagnosis and also some concern Yes. About, you know, the possible impact on the population numbers. And then you have on the other side clinicians who are worried about giving non-directive counseling. And so there really were some concerns. So they brought them together at the University of South Carolina for a big meeting in 2008 after ACOG released their guidelines that all women be offered screening and tried to work out their differences.
Stephanie (21m 14s):
And then one of the outcomes of that was we submitted our document to all of them and they gave feedback. And that ended up being controversial once more, once 2011, 2012 hit and the testing actually became available because at that, at that time, one of the compromises that they all agreed to, and I think it’s important to kind of point out that we had created the document, but we were not involved in the consensus group at that point. We were just kind of, you know, editors who were making the changes that they were recommending. And at the time they said you needed to include all reproductive options, And.
Stephanie (21m 60s):
that was something that was agreed to at that, in that 2010 review after Okay. The consensus meeting. But then after there was some pushback during around, you know, when the, when the testing was released, there was some discomfort from some of the down from what, from some of the down Syndrome community about the inclusion of the termination language. And then it, and so there ended up being some, some disagreements there. But what’s kind of been interesting is that we have continued on with that down Syndrome consensus group and kind of transformed it into a genetic conditions consensus group.
Stephanie (22m 42s):
Because at this point I am, you know, we ended up donating the copyright to the Kennedy Foundation, and then we now are operate at the University of Kentucky’s University Center for Excellence and Developmental Disabilities. And so we are at a university home and we continued this down or genetic conditions consensus group, and we’ve since created materials about other conditions, Turner Syndrome, Prader Willi, Syndrome, Kleinfelter Syndrome, and we’re just finishing up spina bifida where we bring in representatives from the advocacy organizations. We also make sure to have someone with lived experience as part of that review team.
Stephanie (23m 24s):
And then we have the medical organizations and we’ve, we’ve maintained those relationships with ACOG and S G C and A C M G, and that’s the American College of Medical Genetics and Genomics. Thank you. In reviewing all of those materials, So, that it’s, it still ended up being a collaborative process. And then in two thou, the interesting thing is, in 2017 when we revised our materials, because there are people who often experience loss unrelated to termination because of the higher miscarriage rate, we said, you know, can we, can we as a group address some of these concerns about the termination language by making a general loss section?
Stephanie (24m 6s):
And then we can, and then we can provide, you know, resources that can support people who lose, you know, a pregnancy for whatever reason. They actually, as a, as a group agreed to that. But, you know, it took working together over many years to develop trust to get to that point.
Amy Julia (24m 25s):
Wow. Well, and I will say just for any listener who has not seen this, you know, these materials, which I would assume is most people, the thing that to me stands apart from the information that certainly I received when I was in the hospital, which I, I did receive, we had a bad diagnosis experience, but then had some nurses who came in and, you know, said, I’ve got people to put you in touch with. And, and they had printed out all sorts of information from the internet, but it was just words on paper, a lot of it about what might go wrong in the future. And what I love about the letter case materials, at least the most recent copy that I’ve seen is just, there always are photographs.
Amy Julia (25m 7s):
So again, we are not just talking about words, but also images. And there really is a set of, there’s medical information as well as social information And, that sense of not, let’s put a bow on something that is, you know, for many people when they’re first receiving a diagnosis, hard news, like, let’s not pretend that’s not going on right here. Let’s also give a, as you, you know, the language states an accurate and UpToDate portrayal of what this might mean, and recognizing that the word might is very operative, because again, each family is different, each child is different, and the prospects are different. So I just, I really appreciate the way in which you have thread that needle because I think it is, it is pretty tricky.
Amy Julia (25m 53s):
And before we talk about the most recent study, which I promise we really are gonna do, I did feel like this one other backstory question’s pretty important. So there was a bill passed in 2008 with tremendous support and bipartisan support. And if I understand it correctly, it was meant to make it very clear that those words accurate and up-to-date information should be legally required that that was how women should receive Prenatal Diagnoses. And I’d love for you to just tell us the history of that bill, like why was it necessary, but also what has changed or not as a result of that bill going through congress?
Stephanie (26m 32s):
Sure. So, that bill was largely prompted by the research that I mentioned from Dr. Scott Coe in 2005 about the diagnosis experiences that people were having. And it passed unanimously, but then what ended up happening is it was, but when it was passed, they’d watered down the language. So there was no requirement for the provision of information, but there was supposed to be, h h s was supposed to receive funding in order to move forward on those initiatives. And it was supposed to be 5 million a year for five years, $25 million to go toward that. And those funds were never appropriated. So I think there was maybe just a small sliver that was done the very first year amounting to about 300 to 600,000, but they never actually appropriated the funds.
Stephanie (27m 23s):
And it’s kind of baffling in a way. Why not since it passed unanimously. Right. As far as going back to the, the photos, I did wanna say that that definitely was part of the vision to give people the opportunity as though they’re looking through a window to see what life is like. Yes. And we’ve been been really careful with the photographs to give broad racial representation, age representation. And you know, one of the suggestions we got from a very prominent obstetrician was, we need more, you need more representation of health diversity And. that was a fair, that was a fair comment.
Stephanie (28m 5s):
And so we do actually have pictures of kids engaged in therapy and receiving medical care and yeah, I think actually seeing it in the context of looking through a mirror, it’s very humanizing as opposed to some of the old photos. And even now, if you Google Turner Syndrome, you get the black bars over the eyes and it’s a very dehumanizing portrayal of conditions and people
Amy Julia (28m 28s):
Yeah. Yeah. Thank you for Yeah, thank you for telling us that. Well, so, all right, let’s finally talk about this most recent study. And I’d love for you to say, just explain what questions you were asking and why you were asking them, like why it was important to do this and also what you found as a result.
Stephanie (28m 47s):
Sure. So we were there, there have been a number of studies in the past where people have indicated that they had a negative diagnosis, experience, And, that it caused trauma. but we were like, but why? Like, what actually is causing that? So we looked through the current recommendations, you know, by, by all of those major medical and genetics organizations. And we constructed, you know, yes, no questions. Did your clinician give you resources about medical issues? Did they give, did they talk to you about social and life outcomes? And we actually asked, both, asked it both ways because we wanted to give clinicians credit whether they discussed something or gave resources about something.
Stephanie (29m 27s):
So we asked these yes, no questions, and there was only one of them where the answer was supposed to be, if you’re following the recommendations, no And. that is, did you say, did you know your clinicians say they were sorry or act like it was bad news? Okay. And, that that ended up being how we divided the groups for implicit Bias and not biased. And then compared them because it ended up being, just backing
Amy Julia (29m 55s):
Up for just a minute, if somebody said, if they, I did say, I’m sorry, or I have bad news, they went into the implicit Bias category.
Stephanie (30m 6s):
They went into the implicit Bias bucket when we were comparing the numbers. Yep. Yeah.
Amy Julia (30m 11s):
Okay, so sorry, keep going.
Stephanie (30m 13s):
No, no, you’re, that’s a great question. And then we also wanted to get some more context. And so we asked them generally what was your diagnosis experience like, you know, what resources did you receive? What did you, what did your clinician do well, and what could they have done better? So those were the open-ended questions that we also gave.
Amy Julia (30m 35s):
And what were you looking for? Like why, I mean, you’re asking these questions because people have said that they’ve had traumatic experiences, so what do you make of the findings?
Stephanie (30m 46s):
I mean, we were trying to figure out what kind of information they were getting, and then as we started going through it and reading their responses, what really started sticking out in the themes was the level of Bias that they were experiencing about disability. And so what the, the findings really told us. So we found out, so the first thing is that 61% said their clinician said they were sorry or acted like it was bad news. And, and then, you know, as we divided up those groups, we saw that the group that said their clinician, you know, the group that qualified as being not biased, right?
Stephanie (31m 30s):
They performed better in every single category, And, that includes, by the way, offering reproductive options, but not by a statistically significant margin in that one. But they performed better in every category and by a statistically significant margin in the provision of more Comprehensive Prenatal care following a diagnosis, and also in the provision of accurate up-to-date information, life outcomes, referrals, and information about local and national support organizations. And so we saw that Bias was really impacting how these families were being supported and the information that was being provided to them And, that also was manifested in their answers to the question, to the open-ended questions.
Stephanie (32m 18s):
And we started looking for that too. We looked at, in these open-ended questions, where also do we see like what are the themes among those who describe what would be implicit Bias? And also we saw some explicit Bias where, and the difference between those two is implicit is when you just don’t realize that you’re doing it right. Like if you say you’re sorry as a clinician, usually it’s because you’re trying to be empathetic, right? Right.
Amy Julia (32m 42s):
But then you’re trying to have compassion. Yeah.
Stephanie (32m 45s):
Yeah. But then the family often hears, I’m sorry about your baby, not, I’m sorry about your situation. And a and a lot of times that that is the, the distinct impression that those families described when they gave their open-ended responses. But then explicit Bias in those open-ended questions were, when they showed clear evidence of discriminatory attitudes that they should be aware are discriminatory attitudes and So, that, that those were kind of our, the, the way that we distinguished between those and these were evaluated by myself and a bioethicist and also a disability study scholar.
Stephanie (33m 29s):
Amy Julia (33m 30s):
Okay, great. Yeah, thank you for all that context. But, so in other words, the majority of people who are offering these results, giving the results of these screening tests, did so with some implicit Bias and, but the people who did not exhibit the Bias, they gave reproductive options, gave the option of termination, but also gave much more Comprehensive accurate information about having down Syndrome.
Stephanie (33m 59s):
Absolutely. Yeah. Okay. I mean, and you’re talking about when you look at, when, when you compare, so there, there was the question, did your clinician provide you accurate up-to-date balanced information about down Syndrome in language you can understand only 17% in the implicit Bias said that they received that. Okay. As compared to 51% in the not biased. Now that being said, that number’s still not as, as high as I know. The leaders I work with at these organizations would want it to be sure. Right,
Amy Julia (34m 28s):
Right. Of course. Well, and that’s, so that’s my kind of follow up question is like, I know you’ve attended conferences and you’ve been in conversations, you know, working groups, et cetera, with industry representatives, medical practitioners, you know, all these people over the years. Do you think there is institutional resistance, like to presenting an accurate and up-to-date perspective on down Syndrome? Do you think there’s like, what, what, where is this coming from on the medical side? And you may not have an answer to that, but like, what do you think?
Stephanie (34m 60s):
I have a couple of theories. I mean, one, I know that there is just flat out busyness in trying to incorporate all of the learning objectives that they have for clinicians because, you know, they’re struggling just to get them to have the latest information on C-sections, you know? And so yeah, there, I think there’s that element, but I also think we’ve struggled just institutionally from disability not being seen as an identity and instead being seen as an outcome. And in, in fact, yesterday was actually people with disabilities were just declared a health disparity population through h h s.
Stephanie (35m 44s):
Before that they were not included as a minority underserved population. And so I think that is, has been, it was slowly moving, but then, you know, we now have a lot more cultural awareness training that has been been a focus for some of these organizations. And then last, I guess it was two years ago, Lisa Ioni released her research about the Bias that people with disabilities in general experience in healthcare, and you started to have a real movement in the disability community with National Council on Disability, American Association of Health and Disability saying, look, we need to be treated as an identity population that can also experience DiscriminationNYT.
Stephanie (36m 36s):
And I think that’s been now the, the crack that has opened in order for us to actually make this more of an institutional priority.
Amy Julia (36m 48s):
Okay. So this, so I’m just, ma I, this is news to me that I have not, like I haven’t actually known this before. So disability has been, can you, can we go back to that distinction between identity and outcome in the medical world because disability is seen as an outcome that’s essentially like a problem to be fixed or avoided. Is that what that would mean?
Stephanie (37m 13s):
Yeah. And then, and you’ve got, you know, what’s called, and so in like disability advocacy world, that’s the medical model of disability. We see disability as a problem to be fixed. Yeah. And in some cases there are elements of it that are Right, right. It’s very complicated because if my baby with down Syndrome was a heart defect, I want it fixed. Right. Right.
Amy Julia (37m 34s):
Stephanie (37m 35s):
There are other things about some of these conditions and, you know, little people of America, deaf advocates are also very strong in I trying to delineate between these are identity issues and these are Yeah. Or identity outcomes, and these are health outcomes. Hmm. And so that’s, that, that’s been a big issue. I think I, it’s because it’s complicated and it’s hard for people to understand. It’s not as clear cut as something like DiscriminationNYT for other reasons, because there are certain ways in which we want health, health issues to be fixed. But then there are also other ways that we don’t Yeah.
Stephanie (38m 18s):
We wanna recognize as identity.
Amy Julia (38m 20s):
But so what you’re saying is the government has just recognized disability as an identity for the first time. Is that what I just learned from you?
Stephanie (38m 28s):
Amy Julia (38m 29s):
Wow. Okay. And
Stephanie (38m 30s):
That according to the formal HHS health Human Services definition, that just happened yesterday.
Amy Julia (38m 39s):
And I saw that and didn’t know what it meant. So now I’ve like, I’m learning so much. Thank you Stephanie, and I’m sure our listeners are too. Okay. So one other question about this identity thing, like what, how would you distinguish between the social model and the medical model knowing that sometimes they are connected, you know, to each other?
Stephanie (39m 0s):
Yeah, I think, you know, that medical model is, you know, if my child has a heart defect as a person with down Syndrome, we definitely wanna fix that. And there’s value in that. But then I, I also think about one of the best questions I’ve ever been asked at a conference And, that was, what’s a time you were proud of your child for something that had nothing to do with a milestone? And the incident came to my mind almost immediately, and it was when Aundi, my daughter, was in a basketball game and she ended up colliding with another player and she hit her head on the, on the ground really hard. And before anybody could do anything, I see Aundi like leap down two benches and he scooped her up and he didn’t care about the rules of the game.
Stephanie (39m 48s):
He didn’t care about it. I mean, it was just raw compassion for his sister. Yeah. Yeah. And I think that that is part of who he is that is included in with, with having down Syndrome because he, you know, there are times when the rule, he’s just very authentic and the rules don’t matter to him. And I feel like if we took away that piece of him, we might lose some of that also, that that raw compassion that he has. And so I think that’s where it’s really sticky in figuring out that difference between the identity and medical models of disability.
Stephanie (40m 31s):
And then that social model is, are we giving him all the supports to be as successful as he can be in the world and all the health, you know, all in education and giving him all the opportunities. Right. And that’s what he’s getting right now with this college experience and some of these other things. But it’s a much different world than it was, you know, a hundred years ago and 50 years ago in, in giving people the supports they need to flourish.
Amy Julia (40m 56s):
Yeah. So different and also still complicated. And yet I agree. I I really do find that I want to be pretty careful in there’s, I I do, it feels like I can’t pull down Syndrome out of Penny and still have her, and I want her. So, and she wants her like, I mean, the world wants her like, you know, I, it, it’s, it’s, we don’t wanna lose her, you know, and
Stephanie (41m 24s):
That’s, yeah. There, like, Andy’s very proud of who he is too. And. That’s so important.
Amy Julia (41m 29s):
So important. I have one more. Well, I have two more questions for you. I, I wanted to ask you just to speak to the role of insurance in all of this. And I assume that’s also kind of a dicey question because there’s a question of whether insurance companies will pay for these tests, and if so, why, and whether insurance companies want to promote the test, like whether they have an incentive to do that. And, and, and so that’s my first question is just like, what is the role of insurance? And my second question is, well, no, maybe that’s my only question. Will you just speak about insurance for a minute?
Stephanie (42m 3s):
Sure. I mean, I guess where I stand with it, I, I definitely want people to be able to choose the different healthcare options that are important to them. Yeah. And feel, feel pretty strongly about that. But at the same time, I think that I, I I think that it ends up being kind of an inherently discriminatory if you pay for the screening, but not, and I mean this, whether it’s the federal government, an insurance company, a state program. If you pay for the screening, but you do not pay for the corresponding educational and training infrastructure, then you are, you are leaving people Yeah.
Stephanie (42m 48s):
With information that they don’t know how to make sense of. And so, and, and also you’re, it’s not like you’re giving them that information in a vacuum. We live in a society that largely has, you know, discriminatory attitudes about people with disabilities that are based on outdated information. And so you’re not giving it to them in a vacuum. Right. And so you need to be able to provide that, that support. And so I, I mean, in my ideal world, we would correspondingly have training for clinicians on how to discuss disability and we would have cultural competency in their curricula for how to do that as well as continuing education.
Stephanie (43m 37s):
We had a big summit in 2022 where we brought together leaders from the medical organizations, genetics and bioethicists and advocacy organizations. And these were some of the things they all were agreeing on. You know, we need to be doing those things. We need to have the resources available for clinicians to, to, you know, educate families in that moment. We need to have all of, you know, all of that whole, you know, cocoon of support that those families need. Otherwise, you are just picking up one end of the stick and not the other one.
Amy Julia (44m 15s):
Yeah. I, I mean, that kind of leads to my final question for you, which is like, what would you wanna see in terms of changing the landscape with Prenatal testing And? that, what I’m curious about is both the, are there other, are there legislative efforts? Is it, is it, I mean obviously that training and education is a huge piece of it. Are there any kind of wider social efforts or supports? Is there anything else you would say as far as like what do you wanna see come out of learning the information you and having the data that you now have from this study?
Stephanie (44m 49s):
I would really like to see, and, and I mean this is what I mentioned before, but just a much more significant emphasis on training clinicians. Yeah. How to discuss disability. I, I think also, you know, those initiatives like the, you know, the prenatally and Postnatally Diagnosed Awareness Act, the advocates have said that it’s, that’s, that should be a real priority and, and, and you know, not to do some of these ’cause I think in a legislative, you know, among policy makers not to do it for show.
Stephanie (45m 32s):
And I think that that can happen a lot when you’re talking about a condition or an issue that can be really politicized either because of abortion politics or eugenics. And it’s really easy to go in those directions. But I think if you have people who really care, a solid focus on disability rights and on and on patient rights is really the most, is what’s gonna help the most people. Hmm. And that’s, that’s what I would like to see. I would like to see that to be the priority.
Amy Julia (46m 15s):
Well, I am right there with you and I really appreciate the faithful work. I almost said tireless and there’s something to that. But I also, I think there’s just a faithfulness that you have had in continuing to show up for these conversations and provide the materials and insist on a bit of a middle way within this like, fraught landscape when it comes to, you know, as you said, like women actually having choices, but being honored in such a way as to be given real accurate up-to-date information in the face of those choices. And there are people who, whether implicitly or explicitly would say no to either having the information or having the choices.
Amy Julia (46m 56s):
And it’s like, okay, what if we, what if we try to honor that place where we provide information and it is accurate and it is up to date. And we also let go of, you know, thinking that we’re going to control all outcomes in terms of either what women choose or how life is going to go when life is brought into this world. So anyway, I just really appreciate your work in this area. I could ask you, you know, questions for a couple more hours and someday I’m sure I will. But for now, I’m just gonna say thank you so much for being with us today.
Stephanie (47m 33s):
Oh, thank you so much. And I think you raise a really good point too. I think I’d also say we need to make sure we have those supports in places in place for people who are living with disabilities, So that the world is welcoming in the way that it should be.
Amy Julia (47m 47s):
Amen to that. I agree. Thank you. Thanks. Thanks as always for listening to this episode of Love is Stronger Than Fear. I do wanna direct you to a few more great resources that are available during down Syndrome Awareness Month. So first of all, on my social media accounts, each week I’m gonna feature an interview with Penny, our daughter Penny, who has down Syndrome And. that interview will be a space for her to write about an aspect of her own life in her own words. I also have a FREE DOWNLOAD available on my website, Amy Julia Becker dot com that shares five THINGS I WISH I had known when our daughter was diagnosed with down Syndrome here on the podcast.
Amy Julia (48m 28s):
We have also been talking about down Syndrome. Last time I had a chance to talk with the producer of Netflix’s Show Down for Love. That was really fun. And actually, you get to hear from Penny in that episode as well. Upcoming episodes will include a conversation with Kurt Thompson about suffering and hope, as well as a conversation with Sissy Goff about anxiety and parenting. So there is lots of good stuff in store. If you enjoyed this episode, please do rate review, share it, all the things. It only takes a couple of minutes. And what happens when you do that is it just helps this content reach more people. I appreciate it and so do they.
Amy Julia (49m 9s):
Please do also make sure you’re subscribed. That way you won’t miss out on any other episodes. They air every other Tuesday. Couple more things. Okay. I love to hear from you if you have suggestions of potential guests or a, I mean, this actually is my favorite thing, is just to hear what you think about these conversations and to hear what it prompts within you. So if you would like to reach out, my email is Amy Julia Becker email@example.com. I’m very thankful to Jake Hanson for editing this podcast. And Amber Bii my social media coordinator for doing all the things behind the scenes to make sure it happens. And finally, really and truly, finally, as you go into your day today, I hope you’ll carry with you the peace that comes from believing that love is Stronger Than, Fear.
Learn more with Amy Julia:
- To Be Made Well: An Invitation to Wholeness, Healing, and Hope
- Doctors Don’t Know How to Talk About Down Syndrome
- S6 E3 | Down Syndrome and Belonging with Heather Avis
If you haven’t already, you can subscribe to receive regular updates and news. You can also follow me on Facebook, Instagram, Twitter, Pinterest, YouTube, and Goodreads, and you can subscribe to my Love Is Stronger Than Fear podcast on your favorite podcast platforms.