Welcome to The Egg Whisperer Show. I have my dear friend Dr. Carol Burton on today to talk about her new book, The Thin Pink Line: Regulating Reproduction. Dr. Burton has her PhD in animal cloning from University of Connecticut, she did her fellowship at the Burnham Institute, focusing on human embryonic stem cell research, and she has active research interests that span from reproductive biology, basic embryology, to cutting-edge artificial intelligence applications for IVF.
She’s also the founder of ART Compass, which is a free open-source image-based embryology survey tool.
Dr. Aimee: Welcome to the show, Carol! I love having you on. Tell us about your book.
Dr. Carol Burton: My book The Thin Pink Line: Regulating Reproduction (use the code Special20 at check out for 20% off) is all about the history of the regulation of reproduction, modern day controversial topics in obstetrics and gynecology and fertility medicine, and kind of a cutting-edge look at where we’re going in the future.
Dr. Aimee: And, will you tell us about the tool you created for ART Compass?
Dr. Carol Burton: Okay. Great. Oh my gosh, where should I start? Actually, let’s start with artificial intelligence for reproduction.
Artificial intelligence has been huge in different industries for many years now. So, Google, Siri, Amazon. Every suggestion we get is a prediction based on millions of data points of consumers’ previous data. Everything we like on Facebook, everything we get served, almost everything in our world now is a product of algorithms and artificial intelligence.
Probably at least 20 (if not 30) years ago, people started to get the idea that maybe artificial intelligence algorithms can actually help infertility patients. But a lot of the other technologies hadn’t caught up yet. We had to have, for example, the development of time-lapse microscopy incubation for embryos in order to get the kind of data that artificial intelligence systems need to make their predictions.
A lot of the AI systems that have been developed so far in reproduction have not yet been commercialized. They’re not very widely applied in IVF labs. That’s a huge problem because for our patients, up to two-thirds of IVF cycles, by some estimates, are still failing infertility patients.
There are a lot of very intractable infertility cases that can’t be solved, and different kinds of problems in reproductive medicine. Repeated implantation failure, for example, repeated miscarriages, just the genetics and PGT, whether that is having the kind of impact that we want it to have on embryo selection. Getting patients pregnant quickly with a single euploid normal embryo that has a very high chance of success. Basically, reducing embryo wastage, reducing treatment dropout, burnout and fatigue, treatment fatigue. There are all kinds of issues in reproductive medicine and infertility that artificial intelligence could be applied against.
Now, that being said, I and others have analyzed the publications that have been available for artificial intelligence in reproductive medicine. The data that they’ve used, some of the best labs in the world are publishing these data. The algorithms in the studies are published with 10,000 data points maximum. If you compare that to Google or Amazon’s billions and billions of data points, you can see why their AI systems are so powerful at guiding our lives.
We want that kind of power in infertility and reproduction, but we can’t get it because the way that data is recorded, accessed, and kept for artificial intelligence systems, we are still mostly using paper in the labs. So, we record everything about our patients’ cycles on a piece of paper and it gets filed away at the end of the cycle. Sometimes it gets transcribed into the EMR that ports over to the clinical side, but on the lab side, the data is so much richer than what we put into the EMR. Usually, we update the physician with five blastocysts frozen, three of them are normal, these are the grades. It’s a small fraction of the actual data that gets collected during an IVF cycle.
About five years ago, I became pregnant with my own miracle baby. I was in research for 15 years, so all those things that you mentioned, like cloning cows and doing human embryonic stem cell research, all of those things, whether I knew it or not, were kind of preparing me for my new career in clinical embryology. When I became pregnant with my own miracle baby, I had a very strong feeling that I needed to have a career that was more fulfilling, that I would actually be able to leave my house every day and spend my life doing.
I wanted to get out of research and get out of the grant to grant (almost like paycheck to paycheck) lifestyle and get into something that was more stable for my family financially and also more fulfilling for me. Really, we work so hard, and making other people have their families and helping in that way, and being able to apply everything I know about science from embryology, vitrification, genetics, molecular biology, reproductive physiology, all those things, in the lab every day is really what drives me.
I started looking at artificial intelligence systems for reproduction. What I very quickly realized is the reason why this data doesn’t really exist to make these AI systems is because it’s stuck in the lab. ART Compass is all about getting that data out of labs and redefining the way that reproductive lab data can be accessed by AI systems.
What that means every day for physicians, for patients, and for embryologists, is that it’s a software system that all of the IVF lab data can get recorded in and the physician gets insight into what’s happening in the cycle from the IVF lab point of view, the patient can see images of their embryos, know exactly what’s in their cryo-storage inventory, how many embryos they have left, what the percentage of mature eggs retrieved per cycle is.
This gets to the heart sometimes of what we want our patients who know the most about their own cycles and their own bodies to know. Patients now can have unprecedented insight, which can be helpful if they have multiple cycles, they’re switching doctors, perhaps they’ve switched clinics, and they’ve had multiple IVF cycles. Having all of that data about themselves in one place, I think can be very empowering just right off the bat, as the first layer. Then the second layer is how can we apply artificial intelligence systems to this data to make future IVF cycles more successful?
Dr. Aimee: What I tell patients almost daily is the more you know, the better things will go. I come up with all of these mnemonics, like embryo DIAMONDS, you have to know what day your embryo is frozen, the implantation rate, and each letter has something that goes along with it. Basically, ART Compass would kind of replace that, so patients could have that information and not ever say, “Why didn’t anyone tell me that I could have that information about myself,” after five cycles.
Dr. Carol Burton: Absolutely.
Dr. Aimee: That just blows my mind that people just don’t know that this information is out there about them, that the lab knows it, but it may not have been communicated with them. Maybe it was and they just didn’t have enough time to absorb it.
Dr. Carol Burton: From the patient’s point of view, that definitely happens. You call to give the results, sometimes they’re upsetting, they’re not what you expected, they’re not what you had hoped for. You’re emotional. Somebody tells you a lot of information that’s highly specialized over the phone or by email, and then you end up having multiple emails, maybe multiple phone calls. Information just can be everywhere.
It’s funny because a lot of times it’s on the patient to track their own information, but this should be coming from the lab. There’s another app out there that I love, and I’ll just briefly mention it because my team actually worked on the app to help build it and I’m a huge supporter of the Embie App. It approaches this problem from the opposite perspective, the patient puts their own data in about their cycles, their embryos, and their embryo images instead of the lab doing it. Really, that’s because IVF labs haven’t started implementing these digital tools yet.
Dr. Aimee: Wow. Embie reached out to me and I thought it was you, so I was like, “Carol, we’re already talking.” Now I know the connection there, that’s why it felt like it was you.
I want to talk more about your book. You describe it as focused on exploring the history into present day drivers of access, structural inequality, and quality of care issues in reproduction. Then there’s this term, intersectional in its approach. What does that mean, for people who don’t necessarily know what that means?
Dr. Carol Burton: I’m so glad you asked that. Intersectionality is kind of like – let me give you an example. The recognition that we’re all women and women make less than men, but different groups of women are making even less. That is intersectionality. It’s the realization that not all people can be grouped together and there are different layers to each problem that impacts different vulnerable groups in different ways.
A lot of times we first start off by talking about what is the general problem, but then start breaking it down into how does that more specifically impacts vulnerable groups. That could be LGBTQ+, that could be anybody who has been historically oppressed, it could be Black, Latino, all kinds of different things, trans we talk about a lot in the book, and those kinds of issues.
Dr. Aimee: Let’s break down some of those. Access to care is something that has been in the forefront of the news, especially during the pandemic, as we see populations of color having less access to medical care than white populations. How does that affect people of color in fertility medicine?
Dr. Carol Burton: That’s a great question. It really does impact people in a lot of ways.
Number one, getting into the pipeline, having access to the care itself, and just having the diagnosis that brings you into the infertility clinic sooner. It’s a longer time to diagnosis and that can often make problems worse because they’ve been going on for years, a disease process. Also, as you age, of course, your eggs are getting older, and all of the regular problems of aging are happening for infertility.
Then it’s also cultural who is encouraged to access infertility care, who is encouraged to go to the doctor. Do they have a doctor they feel like they’re comfortable going to and talking about some of these things that can be highly stigmatized?
Of course, when they do access infertility care, the rates are lower for the three major minority groups, Asian, Latino, and Black. Not only are the IVF rates lower in general, but the miscarriage rate is higher, so the take home live birth rate is going to be much lower.
It’s like I think about it sometimes when I look at the social media feed, for example, of an IVF clinic that’s in a major metropolitan area, and I can see just taking a quick glance at the first row of squares that they’re not representing all of the people who are in the city. It makes me think to myself, “Who really is accessing this care?”
Dr. Aimee: I know we’ll talk a little bit more about how we address that, but I also want to talk about structural inequality as an issue which is also addressed in your book. What do you mean by this and how does it impact patients?
Dr. Carol Burton: The structural inequality is those inequalities that are built into the system. You often don’t even know that they’re there, because they’re so much a part of the system that you don’t know, for example, that there is any other way.
One of the interviews that I did for the book was about uterine fibroids. A lot of times they go to treatment for that immediately for Black people as let’s remove the whole uterus, instead of offering different treatments that can preserve their fertility. That’s one of the examples where it’s so structural that you don’t even know when you’re a patient that there are other choices, and you’re sort of taking the advice of the physician, who may not look like you and who may have their own implicit biases. Maybe they haven’t even had a conversation with you about whether you’re done building your family or not.
Dr. Aimee: How about with pain management? I think that’s something you address in the book as well. Are women of color less likely to have appropriate pain management offered to them?
Dr. Carol Burton: Yes. Women in general are. When you survey physicians, they sometimes think that women are kind of inherently built to be able to handle pain because we go through childbirth, or for any number of reasons. People might just think women are so strong, women are stronger than men, men don’t get sick very often but when they do it’s like the man-flu, they can’t handle it, but women can. Therefore, I think pain management is offered less frequently and not to the amount that it should be.
This is a case again of intersectionality. I have an example from my own traumatic induction, which led to an emergency C-section. The male physician, a very young male physician, did a very painful procedure on me where they inserted a full balloon into my cervix and then tried to manually get my cervix to open up by slowly inflating the balloon and then pulling it out centimeter by centimeter through my cervix. I was in so much pain, there was blood everywhere. Luckily, my husband wasn’t in the room, because it literally looked like a war zone.
Nobody mentioned pain management at all. The doctor came in every hour and pulled it another centimeter. By the morning time, my blood pressure was sky high, I was in so much pain. Pain management was never offered to me until a female nurse busted in that morning and was like, “What is happening with this patient’s vitals?” She was looking at everything and said, “You’re in pain,” and she offered me some morphine. I didn’t even know it was a choice. It was just horrible.
Magnify that, multiply it by implicit bias, structural inequality. I’ve heard from many Black women who have been treated like they’re seeking pain medication like drug-seeking behavior, they’re questioned much more. When the nurse came in and said, “This patient needs pain medication. Do you want pain medication?” and I said yes, I wasn’t questioned. So, I wasn’t offered it, but I wasn’t questioned. Nobody treated me poorly because I said yes, I wanted it.
I think those are examples of things that can happen. I do mention in my book that there are some procedures that are routinely undermedicated in reproduction. Hysteroscopy with biopsy can be one of those. There’s a whole society in the UK now that is doing some good work bringing this light to this topic. Again, a lot of people think the biopsy is just going to be a little snip, probably a lot of male doctors performing it, and it ends up being this blinding, traumatic PTSD-inducing pain in women.
Dr. Aimee: Oh, yes. The hysteroscopies, the HSGs, the D&C. The uterus is inside the body, it’s an organ, it’s a muscle, and if you’re removing something from it, it can be quite traumatizing. If it’s done in an office setting without any anesthesia, guess what? You might not have a complete procedure. You might think you’re having everything removed, but it’s not being removed, because you’re awake, you might be in pain, moaning, moving a little bit, so your doctor might not be able to actually remove everything. You don’t know that necessarily, until you go back and then find out that the problem is still there.
I have a whole thing. I have a video, actually, on how to survive your HSG procedure, and I have it out there for people to realize that it’s a painful procedure and people should be offered pain medication, and then it’s your right to refuse or decline. But if you don’t know… I’ve heard things like you expect to be in labor, this is just practice for that. I find that to be just quite patronizing and extremely rude and insulting. We would never do that to a male patient, never, but we somehow think that it’s okay and all right to do it to women.
Dr. Carol Burton: I think about the pain management that’s offered for TESE patients, where they’re taking a biopsy essentially of the testicles. It’s so painful, but pretty much equivalent to what you’re talking about. They’re offered pain management for days after their procedure. It’s just so starkly different.
I’ve heard people also a lot of times saying take stronger pain management the day of, but then after that you’ll only need Tylenol.
Dr. Aimee: Even with the egg retrieval procedure, I offer all of my patients stronger pain medication than Tylenol and Advil. Only 5% of them will use it, 95% of them won’t. but at 2:00 in the morning, if you’re in severe pain, I don’t want you running to the emergency room because you’re having a hard time sleeping and you’re in pain. A simple pain pill is important for my patients to have, from my perspective. Thank you for talking about that.
Dr. Carol Burton: This is how you can advocate for yourself as a patient; finding a physician who looks like you, or as close to you as possible.
Dr. Aimee: It’s hard to find someone with a nose as big as mine, I have to tell you that.
Dr. Carol Burton: Or as beautiful as you.
Dr. Aimee: You also talk about quality of care as a point you address. I know that you referenced that maternal health outcomes are worse today than they were 100 years ago. What is happening with this?
Dr. Carol Burton: First, I want to say by writing this book, I am trying to help do the work of educating and taking that burden off of the vulnerable populations who have been doing a lot of work in this space already. Not only do I mention a lot of the groups that are working in this space in the book, but I want to continue to lift them up. The Shades of Blue Project, the Earth App that has just come out now, the NAB, and there are many associations that are doing a lot of work. We want to point to them first as the experts and center them. Secondarily to that, part of the reason for me writing this book was to help do some of the work of educating.
I do have a whole chapter that addresses this. The easiest way that I can bring this topic to light for people is I reference a lot of times the heart attack work that has been done for men and for cardiovascular disease. We know beyond a shadow of doubt that anger, anxiety, and feeling like you’re not in control raises the risk of heart attack. Now, think about how many times a day a person of color is going to feel those emotions in their day-to-day life. It adds up to something that is more than the sum of all of those parts, and we see that reflected in the outcome data.
It’s everything from health care to the underlying health problems, but it’s the provider teams, and then it’s so much more as well. You can’t really quantify a lifetime of those small injuries, a lifetime of those microaggressions, a lifetime of what we see in the news almost every day these days. The trial of the public murder and execution of a Black man has been interrupted by just down the road another very public extrajudicial execution of a Black person. Your body is absorbing that trauma, your culture, your community, and all of those things. So, it has to be addressed from multiple angles.
We’re so lucky these days that we have what they call Momnibus legislation, and now we have some people who are really focused on these things in power and making them a priority. I think the more young people who can get involved, like we saw in Georgia with Stacey Abrams, and the more young people we can get involved everywhere, it’s going to help to start turning the House and the Congress to a younger, more diverse, and people who care more about a wider variety of issues.
When I look at what has gotten funded as research priorities in the last 20 years, they really reflect who you see in Congress. Diseases of aging, Alzheimer’s, Parkinson’s, Cancer, there’s a lot of funding for that kind of stuff and not a lot of funding for maternal health.
Dr. Aimee: I feel like we’re going to get to where we should, I’d love for us to be in charge, where a woman says they’re pregnant or they’re planning a pregnancy, then we have this tool kit and meals that are delivered that are organic and healthy, because it starts not just at birth, it starts even pre-pregnancy. That trimester zero is where we need to start getting involved immediately.
Everything you talk about in this book is just so important for everyone to know. Much of the burden of raising this awareness has traditionally sat with women of color. What can we collectively do to change this?
Dr. Carol Burton: I have a couple of simple actions that I think a lot of people can take. If you’re not following these accounts on social media, you cannot see what they’re posting and you cannot amplify their message. A super simple thing to do is go out and follow five Black maternal health related accounts and amplify their message, center them in the work that they’re doing.
It’s easy to do on social media. Likes, comments, and shares are the currency that drives the algorithms. I can see who are the people who have the most followers, and some of these other accounts could use followers. Let’s mobilize our social media army, let’s go out and follow these people, let’s share what they’re doing. That alone, it’s the kind of thing that you can’t buy.
For example, every time The Egg Whisperer likes one of my posts, it brings me so much joy because I know that post immediately is going to get more traction on social media, because I have 3,000 followers versus that 17,000 or 20,000 followers. It’s immediately helpful to me. That’s one thing we can do.
You can read my book, which you can get for 20% off right now using code SPECIAL20 at checkout, and raise awareness of all of these issues for yourself.
Then I want to start seeing these topics being taught more in class and in school. I also want to see more outreach to start filling the pipeline of scientists and physicians earlier with people who have seen the impact of these problems in their community, and they’re going to grow up to be the ones who come into the field and help us solve it.
Dr. Aimee: Do you have anything else you’d like to share about your book or work?
Dr. Carol Burton: Yes. One of the things I really want to talk about is infertility research and embryonic research.
I field tons of questions on my Instagram account all about PGT, about embryo glue, about
cycles, stimulation medications and what’s happening, and miscarriage, and euploid embryos, and all those things. One refrain I hear from people over and over again is, “Why is this more like an art instead of a hard science? Why aren’t there answers to some of these questions? We should know this. It seems like scientifically we should be able to get to these answers.”
I couldn’t agree more, but part of the problem is that research that destroys embryos in the process has been illegal to fund that from the federal government since the ‘90s. We’re looking at a situation in our country where after 30 years of research, the void has been filled by private entities and private interests. Maybe some foundations that can finance this kind of research and perhaps some state level funding that can finance this kind of research. Here in California, we have the California Institute for Regenerative Medicine, and that specifically separately funds embryonic stem cell research.
But researchers have been unable to attain federal funding. They can attain funding for everything that happens before conception, but it stops at the embryo itself, and then everything that happens after the embryo gets transferred back, so there is a huge gap.
At the end of the book, I talk about some of the really cutting-edge research. We talk about CRISPR human embryos, which is genetic engineering for human embryos. We talk about three person embryos, that’s an embryo made with the DNA from three different people, which is legal now in the UK, and people’s mitochondrial genetic disorders are being resolved through this method of treatment.
I talk about a lot of other things, too. Like how we can only grow embryos in the lab for 14 days before legally we have to discard them. Then I talk about chimerism and the risk, just a huge research article that came out in the news about making these blastocyst-like structures that were chimeras of monkey cells and human cells. At first, it sounds like this stuff is so Gattaca. It’s like oh my gosh, monkey-human-chimeras, we’re going to start having Planet of the Apes.
This sounds scary, but the point of doing all of this research is to resolve some of these issues. From the embryo’s perspective, what is happening in the embryo that the crosstalk between the embryo and the endometrium is not establishing so there are repeated miscarriages?
If we want to start solving some of these problems or answering some of these questions in IVF about what works and what doesn’t work, definitively, we need public funding. It needs to be moved out of this fear of retrospective data. These studies that we rely on are usually retrospective non interventional studies, because there can’t be a study arm. That’s not gold standard science. We want perspective randomized controlled clinical trials where there are interventions, there’s double-blinding, and there’s randomization, and there’s treatments for the embryos.
This needs to be funded publicly. Basically, we rely on a few of the private IVF clinics that do a
lot of the research and then they publish it. They don’t have to do that, and who knows how long that funding will last for. There’s some conflict of interest there, I guess is what I’m trying to say.
Dr. Aimee: I don’t know that we’ll see that day in this country, but we might. Do you think we will?
Dr. Carol Burton: I hope so. I hope we will see it in my lifetime.
Dr. Aimee: Where can people find your book and learn more about you?
Dr. Carol Burton: The book publisher is NOVA. If you Google The Thin Pink Line: Regulation Reproduction, there’s also a movie out there by the same title, not Regulating Reproduction, but The Thin Pink Line, but you can find it. Of course, please use code SPECIAL20 at checkout.
I’ve also been giving some guest lectures for classes, college level ethics classes. I love coming in as a guest and being able to educate people about these topics, so I’m happy to do a guest lecture.
I’m also very available on social media, so they can follow @ARTCompassIVF on Instagram or @ARTCompassApp on Twitter. They can find me on LinkedIn or Facebook. All the algorithms will help you find me.
Dr. Aimee: I know. When people say, “How do I find you?” I’m like just find my name and message me from anywhere, literally.
Thank you, Carol, for coming on. I appreciate you and all the work that you’re doing. I cannot wait to see what’s yet to come. You’re a very special and dear friend of mine, and it’s always lovely and awesome to have you on as a guest. Thank you for your time today.
Dr. Carol Burton: Thank you so much for having me.
Catch more of me and topics like this through The Egg Whisperer Show. Episodes are live-streamed on YouTube, Facebook, Twitter, IGTV and Apple Podcasts. Sign up to get my newsletter. Sign up for The Egg Whisperer School.