E83: The Intellectual Domain of Pap Smears

Katie: Welcome to the "7 Domains of Women's Health." I'm Katie Ward. I'm a professor at the College of Nursing and a practicing nurse practitioner in women's health.

And I'm joined today by my friend, Kirtly Jones, from Obstetrics and Gynecology at the University of Utah. Kirtly is one of the people who taught me to never stop learning. So today, we're learning and we're thinking.

Kirtly: We are learning today.

Katie: We're thinking deeply about the intellectual domain of Pap smears. And I bet you're wondering, "What could possibly be intellectual about a Pap smear?" Today, we'll be exploring some of the uncomfortable but important history behind cervical cancer screening. I wanted to talk about the development of the speculum and issues of maybe exploitation in medical research and a little bit about how guidelines are actually agreed on.

So I think the intellectual domain gives us a chance to examine not just what we know, but how we came to know it and at what cost. Medical innovations don't just happen in a vacuum. They're shaped by the social contexts of their time and the power dynamics of their time.

Some of these stories we're going to talk about are uncomfortable. We're going to talk a little bit about medicine's relationship with some marginalized communities, and this is going to be a challenging conversation, I think.

Kirtly: Well, we should start maybe with J. Marion Sims, who went by Marion, who was a southerner. And he's often called the father of modern gynecology. Certainly, when I was training, his work was really important. It had been almost 100-and-some years before in terms of helping develop surgical techniques regarding vesicovaginal fistulas.

These are the holes that come between the bladder and vagina when labors went on too long and the baby's head pushed too long against the bladder and the vagina. It wore a little hole there. And these cause incontinence, but total incontinence, meaning women just leak all day long.

At the time, there weren't any pads or anything. People just leaked down their legs. And these women who had these became social pariahs. It was a terrible situation for them because they always smelled bad no matter what they did.

And he also refined the speculum. Speculum comes from the word like "spectacles," meaning to see, which is a device which all women understand. Like, "How far can you get down on the table?" Women understand that. It goes in the vagina and then opens up so you can actually see in there, and that revolutionized gynecologic care.

But there's a more complicated side to his innovations, as there was for almost all innovations 100 years ago.

Katie: So I want to give a shoutout to a really beautiful book by . . . The author is J.C. Hallman. And the title of the book is "Say Anarcha." And that's been my reference for learning about Dr. Sims and a little bit about what I'm going to talk about here.

I thought Hallman did a great job. He did this beautiful research about the South and the night the stars fell, but also really finding out a lot of information about the women that Dr. Sims was operating on.

Most prominently was a woman named Anarcha, but there were some other women, Betsy and Lucy. And what he was attempting to do in his book was to give them back their place in history.

These women were all enslaved and they all had incontinence due to fistula. And the backstory behind that is that fistula is more common when people are giving birth when they're very young and their pelvis is small and the head has a hard time fitting through. So what had happened to these women, or girls maybe, is also hard to think about.

So these were all enslaved women who were suffering from this fistula that you just described, Kirtly, and there weren't really techniques to fix it at the time.

It happened to all kinds of women, not just enslaved women, but I think that was an environment where Dr. Sims had the opportunity to essentially experiment with his surgical techniques. So he would make lots of efforts at this repair and try something and it didn't work, and try something else and it didn't work.

We know his name today because, eventually, he was successful in developing these tools and techniques. But the women, he operated on sometimes over and over again and often without any anesthesia.

Kirtly: Well, remember, there was no anesthesia in those days. There might have been alcohol, meaning give people enough alcohol, but all operations . . . and the horrible stories of limb amputations during the Civil War. So it wasn't that he was trying to be mean. He had no other options at the time.

Katie: But I think just to remember the names of these women. And the story that Hallman tells in his book, these women developed techniques for supporting each other during recovery. They became each other's nurses. They really ran a ward for fistula patients and they took care of each other. They were developing surgical recovery techniques and ways to support each other during surgery in terms of positioning and support in the surgical suite. So hearing that part of the story was also really fascinating to me as well.

Kirtly: Well, that kind of work has gone on in Africa. They have a fistula hospital there and women who have had fistulas stay on and become the surgeons, even though they're not trained as physicians, formally trained. They just do this one operation over and over. So this still goes on even today with young women who had babies that were too big for their pelvis.

Katie: I see this going on a bit now and it certainly is kind of spilling over into our current news where hospitals are kind of reckoning with this. How do you deal with this history? So some have removed statues of Marion Sims. Others are advocating for acknowledging this full history and acknowledging Anarcha and Betsy and Lucy.

But we have these tools. And honestly, they're good. The speculum, we've continued to innovate and we've come up with some things that are more comfortable and more versatile, but that basic design has remained. So necessity being the mother of invention, I think he developed a good piece of equipment.

But I think it's also important to share the rest of the history and acknowledge the other people that sort of go unsung in that story.

Kirtly: Our first episode of the Pap smear, we talked about Mary . . . was it Mary Papanikolaou?

Katie: Mary Papanikolaou, my hero.

Kirtly: Who, hopefully with informed consent from her husband, allowed her body to have something like however many hundreds or thousands of Pap smears.

So I did some of my training at the Boston Free Hospital for Women at this hospital, which is now closed as a hospital and turned into elegant condos. It was built in the late 1800s, and it was beautifully designed building. It was an honor to train in this historical building. It was at a beautiful location and a beautiful mission to treat poor women with gynecologic cancer regardless of race or creed. And in Boston, that's a big deal.

So wealthy Bostonians would donate a bed, which means not the bed, but all the resources that went with the nursing, which would provide a hospital bed and nursing care. And the surgeons largely provided their services for free for poor women who were largely white at the time, some not.

Many surgical techniques and treatments for gynecologic cancer were refined there. And I'm quite sure that the concept of informed consent was equally unknown in the late 1800s and early 1900s.

Women were referred there and they were willing to have surgery or radiation to treat their cancer, but dosing and what kind of things to do were still in their infancy. I'm sure they did not know what was going to be done or how successful it might be or what the side effects might be.

And this hospital was a Harvard teaching hospital and it evolved over time, as did medicine and surgery, to understand the ethical issues of informed consent.

However, all over the world and in the U.S. among women who are not medically sophisticated and who are terrified or humiliated by their gynecologic condition, it is difficult to know if women understand what is in front of them even when we try our best.

If you just think about what you sign before your procedure, there's some scribble on the top and then there's a bunch of writing and most people don't read it.

Now, for me, the term "moral relativism" suggests that what is the "right thing to do" varies across cultures and time. And it currently has a bad rep, moral relativism, but it's hard for me to be morally superior to these clinicians who are trying to do something they perceive as good when I didn't live in those days.

Now, Katie, did you find in your readings that Marion Sims' mother had a fistula? I do believe she had a fistula from the birth of him, and he spent his life trying to do something that would help women who had been in his mother's terrible situation.

Katie: Yes, I think that that is the case. And so he was motivated to solve this problem.

Kirtly: Yeah. And he personally experienced the kind of thing that his mother went through. Anyway, there you go, Katie. That's my little take on how do we begin to judge what people did? And certainly, we do. We do all the time.

We all agree that slavery was inhumane and we all agree that the way enslaved people or people of color even now are treated as something less than who we are is wrong. But sometimes it's hard to know because I wasn't there. I wasn't there standing there.

Katie: As a provider, I think I try to do the best that I can with the information I have. I've certainly seen my practices change over the course of my career as new techniques have become available. And so, yeah, I get that.

Well, let's look at another story that sort of leads into Pap smears and cervical cancer. This is a story I think people might be a little more familiar with because there's been a movie and a book. And that's the story of Henrietta Lacks.

Henrietta Lacks had cervical cancer, and she had cervical cancer cells that were taken as part of a biopsy. Now, again, I think she knew she was having her uterus removed, but the cervical cancer cells were retained in a lab. And these cells became known as the immortal HeLa line of cells that was named after her, the two letters of her first name and the two letters of her last name.

They had this unique property where they reproduced very quickly and they seemed to be kind of indestructible. So that cell line became crucial for all kinds of medical advances, including the development of what we now have as the HPV vaccine.

They've also been used to develop polio vaccines and to study cancer and to study HIV and even helpful in the development of COVID-19 research. So it's a cell line that researchers can superimpose other things on because the cells just keep working underneath.

So this had been this marvel in biomedical research, and Henrietta Lacks' own family didn't know about this until some author writing a book came along and contacted the family to learn more about Henrietta's life story.

It's a property of cancer that cells multiply uncontrollably, and maybe indefinitely. It's sort of the price of being immortal, I guess, is that you're a big cancer.

But Henrietta's cells were also infected with HPV-18. And we've talked about that in previous episodes as one of the strains that causes cervical cancer. So it was somehow the combination of Henrietta's DNA and the HPV that created this particularly robust line of cells that replicated so dependably and created a consistent culture medium that scientists can use.

But when Henrietta's family heard about this, they were pretty confused about it. Is Henrietta still living? What does this mean? Is this still a part of her? So that raised some questions for her family about ownership of biological materials and, again, informed consent.

And it also raised questions for them about should families be compensated when their relative's cells lead to some kind of profitable medical advance?

I believe there's actually a lawsuit ongoing along those lines. So it's another interesting intellectual foray into how we learn and how this technology develops.

Kirtly: Well, I struggle to know who has dominion over human tissues that are thrown away. I think back to what was the ethical norm in the days of early cell research, and tissues removed during surgery were usually discarded after they went to pathology. And that includes placentas after the birth of a child.

If someone finds a use for tissues that were destined to be discarded, does that mean that those tissues and the knowledge that might come from them still belong to the person from whom they came? I'm not sure. This is a trouble for me. My guess is if it's in the garbage, then you've given it away. But maybe people didn't know they were giving it away.

These days, when you sign a surgical consent, you agree that the tissues removed can be discarded after pathology. So I don't know what would happen if someone said, "No, I want to take them home," or whatever.

Katie: Well, I've heard gallstones are pretty, so maybe I would take those home. But otherwise, no.

Kirtly: When I was an intern, I took somebody else's gallstones home because they were gorgeous. They were cholesterol. They were so pretty.

Katie: Yeah. I mean, I think part of it is we have gotten smarter, and so we're having people sign consents and we're being very clear about what the disposition of the tissue is.

We see that with women now who request their placentas for various reasons. And we've figured out a way to provide that if somebody wants to take it home.

But they're interesting questions, and at least talking about it and getting it in the discourse means that people have more insight into what's happening.

Kirtly: Autonomy. Insight. Yeah.

Katie: So let's talk about something else that's sort of an interesting intellectual component of the Pap smear. And that's who decides the guidelines.

So that's been a thing that I've been observing over my career, is that guidelines get changed sometimes suddenly and sometimes it takes a long time.

I remember a mentor that you and I both know, Kirtly, who would talk about this, and his acronym was BOGSAT, which stands for Bunch of Old Guys Sitting Around a Table. That's a little cynical.

Kirtly: I've been around that table and I was not a guy, but I remember being at a table where guidelines were being decided for five million women and I was thinking, "Well, these are smart people and I'm a smart person, but gosh, this is an interesting process. This is a way probably decisions are made in every small town, but we're talking about five million women."

Katie: Right? But even now, our current FDA is still a limited number of people that bring, of course, all of the relevant medical, the science, and the research, but you do sometimes have somebody who has a particular ideology that is overly influential. And I've seen that happen where things get approved or don't get approved because of one person's particular stance on a topic. It's another interesting insight into how the machinery works.

I think also to be thinking about how important it is for us to be involved with who we put at that table.

Anyway, we have learned a lot about the natural history of cervical cancer. What has changed a lot is we do a lot less treatment now than even when I started my career.

So what we've learned is we have a better idea of who's going to progress to cancer and who's going to resolve this without any intervention. And that has come from very hard work in the Kaiser system where they have a long-term study of 1.5 million women, and they get really meticulous follow-up. We've kind of watched to see if we don't intervene, who's going to get better?

What that has resulted in is a very personalized set of recommendations. And so what I and all providers who work in the space utilize is either an app or a computer site that we can go to and we can put in information about our individual patient: their age, their past history, whether or not they're pregnant, whether or not they smoke, whether or not they've been vaccinated.

So we put in a lot of information and then what's going on with their current Pap, and that sort of helps us really craft a very individual follow-up.

That's another bit of, I think, technology and thought and science that's really gone into . . . Instead of a very one-size-fits-all "if your Pap says this, then you're going to get treatment," we can individualize that down to the person sitting in front of you.

So I think we've come a long way in how we manage an abnormal Pap smear. And that's the result of a lot of scientists doing a lot of hard work.

I think the intellectual domain is challenging because, as we've talked about, it forces us to confront some uncomfortable truths about our history, or at least look at how we learn. And also understanding that the innovations that save lives today came from some problems in the past.

I think the other thing is just thinking about that the knowledge we take for granted is influenced a bit by who holds the decision-making power in our healthcare system. And that's a very contemporary question to talk about.

Kirtly: Absolutely. And the decision of who's at the table, or who gets to decide who's at the table, and who decides who those people are, it isn't always a decision that's made through the foundations of science. It's often and increasingly a political decision and, therefore, it's got an agenda. And that concerns me greatly.

Katie: That's why this intellectual domain is so important. I think we need to understand these intellectual and ethical dimensions. I want my patients to be better informed so they can advocate for themselves. That knowledge brings power. But I also am seeing patients who are being informed by influencers that don't necessarily have their best interest at heart. So it's been a challenging time.

But I want to say thank you for coming along with us on this intellectual journey about Pap smears. I know some of the history we've talked about is hard to hear and we've brought up some controversial topics, and I appreciate you staying on with us while we talk about this.

Understanding our medical past, both its successes and its failures, helps us become more critical thinkers about healthcare today. So examining who's historically made decisions about women's bodies and who's shaping those guidelines, we can better advocate for evidence-based care that truly serves women's needs.

I think the intellectual domain isn't just about the clinical facts. It's about recognizing the human stories, the power dynamics, and sometimes the uncomfortable truths that have shaped our healthcare system in the past and are continuing to shape it today.

We hope this knowledge empowers you on your healthcare journey. So if it has, share it with the people in your life. You can learn more about Pap smears in all of our "7 Domains" series on the podcast platform that you get your podcasts on, or at womens7.com.