Transcription:
Neurologists Role in Eugenics

Dr. John Lantos (Host):  Welcome back to the Pediatric Ethics Podcast coming to you from the Children's Mercy Hospital Bioethics Center in Kansas City, Missouri. We address topics in bioethics generally, and focus mostly on pediatric bioethics.

Today, we are thrilled to have with us, Dr. Pedro Weisleder, who's Professor of Pediatrics at the Nationwide Children's Hospital, part of Ohio State University and he's Co-Chair of Nationwide's Hospital Ethics Committee. He's a Pediatric Neurologist and has been looking into some of the issues in the history of the eugenics movement. And in particular, the role of neurologists. Now, most people who think about eugenics, think about Nazi Germany and the eugenic policies that the Nazis implemented. Dr. Weisleder, you studied some publications that did not come from Nazi Germany and were printed before the start of World War II. Could you talk a little bit about those publications and the timing of the work that these publications described?

Pedro Weisleder, MD (Guest): Sure. Thanks so much for the invitation Dr. Lantos. I do want to put in and say that I am a proud member of the first class of the Certificate Program of Pediatric Bioethics.

Host: Oh, we are proud of you.

Dr. Weisleder: Well, thanks so much. Oh, indeed, I started a couple of publications. One of them was published in 1914 and it is titled the Eugenics Record Office Bulletin Number Four. So, the Eugenics Record Office was an institution that was housed at Cold Spring Harbor Laboratory in New York. And at about the beginning of the 20th century, they were initially a laboratory that studied human genetics and animal genetics, from this time point of Mendel's laws of heredity. After a few years, the person that was the director of the laboratory, whose name is Charles Davenport, together with a colleague of his Harry Laughlin, turned the work of the Eugenics Record Office into the study of human characteristics, but they had the tilt that their main goal was to identify human characteristics that were deleterious to humankind with the eventual goal of trying to eliminate those unwanted characteristics. So, the Eugenics Record Office published a total of 27 bulletins in which they described their work. And some of these were simple reporting of their work on human heredity, also their work on identifying methods to collect data for genetic characteristics.

And one of those publications was the bulletin number four, which was titled a First Study of the Inheritance of Epilepsy. So, this bulletin was published in 1911. So, in these work they essentially collected data of individuals that had epilepsy and they tried to report it in a biased way. Basically in their mind, reporting or in the actual book, they reported how individuals with certain characteristics like alcoholism or pauperism how those individuals were at risk of passing their epilepsy on to the subsequent generations. They also talked quite a bit about the term of feeble minded. So, feeble-minded would be what in today's term we would describe an individual with mild cognitive impairment.

Host: So what would the implications of considering these to be inheritable traits be for their recommendations? Did they recommend sterilization?

Dr. Weisleder: Correct. They recommended either sterilization or at least that individuals with epilepsy, be segregated into facilities during their reproductive years with the intent of limiting, if not completely eliminating their ability to reproduce.

Host: And this would be consistent with the philosophy of eugenics at the time, right? The idea was to eliminate diseases by controlling reproduction and not allowing people with undesirable traits that were considered genetic to have children. Is that your understanding?

Dr. Weisleder: Yeah, that is correct. There were two ways in which the eugenesists wanted to control what they would describe the human stock. One was positive eugenics in which they would encourage individuals with desirable characteristics to reproduce and then negative eugenics, which was essentially limiting the possibility that individuals with undesirable characteristics would reproduce.

Host: So, the authors of these papers were pretty highly regarded neurologists. Cold Spring Harbor was a leading research laboratory. What can you tell me about the authors?

Dr. Weisleder: Let me just mention quickly the other book that I studied, which was book that was published by the American Neurological Association. And that one is called Eugenical Sterilization, A Reorientation of the Problem. So, let me start with those authors. The main author of that book was Dr. Abraham Myerson. He was a neurologist, highly regarded neurologist who worked at Tufts College of Medicine and then also Harvard University. Another one of the authors was, Dr. James Ayres. He was also a very well-known neurologist who worked at Massachusetts General Hospital. He was the Chief of Neurology for 20 years.

And during his time, he developed a couple of important laboratories, the most important one, one that he called the Brainwave Laboratory, which of course refers to the electroencephalogram. Another one of the authors, Dr. Putnam, he also started his career in Boston, eventually moved to Columbia University. He is one of the pillars of neurology because together with Houston Merritt, he identified the anticonvulsant properties of phenytoin, which is a medication that we use today. Not so much for the management of long-term treatment of epilepsy, but certainly in emergency medications or patients that are hospitalized that cannot take oral medications.

Host: So the fact that these two leaders of American Neurology were advocating eugenics suggests just how mainstream the movement was in the early 20th century. What did other neurologists say? Did they support the eugenics movement? Was there any pushback?

Dr. Weisleder: There was pushback, as you might imagine. But again, it comes back to the American Neurological Association was the first organization that brought together neurologists. It is still operating today. It is an organization into which people are inducted. It's not just simply I want to become a member. I do want to mention just the last one of the authors of that book, which was Dr. Leo Alexander. Dr. Leo Alexander, his most important contribution to history, He was one of the two expert witnesses for the prosecution during the doctors' trial at the end of World War II. And the doctor's trial was that in which United States brought suit against individuals that had carried out human rights crimes, especially those who had done experiments on humans, on victims of the extermination in concentration camps.

Host: So, those were part of the Nuremberg trials that led to our current system of research regulation.

Dr. Weisleder: Correct.

Host: What did other neurologists have to say? Was everybody on board with this idea of perfecting the human race through selective breeding?

Dr. Weisleder: So, there were definitely individuals that supported these notions. These were the publications, especially the one that I just mentioned, is one that was presented at national meetings. There is no, not that I know, a specific comment about what other people said. One would assume that if this type of publication came to a national meeting, it was important. Furthermore, the fact that this book was published, it came from the officers of the American Neurological Association. They wanted this book published.

Host: So, how did you come across these and what further investigations have you done to understand what was going on back then?

Dr. Weisleder: Well, I learned about this book after reading a paper by two bioethicists of the modern area. I'm sure that, you know, them, is so fair and also and they wrote a paper on eugenical sterilization. And as part of the paper, they mentioned the book of the American Neurological Association, somewhat in passing, but they definitely mentioned it.

So, I contacted our research librarian and asked to see if she could find a copy of the book for me. And a copy of the book was right here in my backyard, the library of the Ohio State University had it. And so, I was able to read the book. Of course, I read it from cover to cover and became interested in how was it that the book might have impacted the practice of medicine in general at that time, or what the people think of it. And so I have to confess that it was some sort of serendipity that I decided to look at whether someone had reviewed the book, which is something that we know people do. And that's how I came across different commentaries.

Host: What got you interested in it in the first place? You're a pediatric neurologist. This is not your everyday concern, I would guess. What led you to this investigation?

Dr. Weisleder: I am a neurologist and we are all certified by the American Board of Psychiatry and Neurology. So, it is something that is in my backyard, so to speak, even though I specifically treat children with neurological diseases. But this is quite germane because some of the suggestions that the authors of both books have, would impact the children that I see in clinic. We see children, of course, epilepsy is the number one referral reason. And that would be one of the conditions that these authors advocated for sterilization.

Host: So, what do we know about the genetics of epilepsy now?

Dr. Weisleder: The more genetics tests have improved, we have come to learn that many of the conditions where in the past, we unfortunately didn't have an answer for families, are conditions that have a genetic basis. In the past, we might have literally told families, we don't know why your child has epilepsy. There may be some genetic component because there are other family members that have the condition, but it wasn't until more sophisticated ways of analyzing people's genome became available. So, now we are at the point that we can order epilepsy panels.

Host: And do you usually do that for kids with epilepsy? Is, is a genetic workup, a standard part of the evaluation these days?

Dr. Weisleder: I won't say that it is standard. We definitely do genetic testing again, when we identify that there may be other family members, then also in children whose epilepsy is difficult to control. Or some forms of epilepsy that may be associated with brain malformations or delays in achieving developmental milestones. Those are the type of situations that would prompt one to order an epilepsy panel.

Host: And when people talk about the utility of genomic results, often one of the claims is that these tests are beneficial because it allows you to counsel parents about future reproductive choices. If you find out that it's genetic and it's been passed on from the parents, you might tell them their risk for having another child with a similar disease. Do you see any echoes of the eugenics movement in that approach to the care of children and families, where a child has epilepsy?

Dr. Weisleder: I don't see the echoes, for several fundamental reasons. The first one is that with the information, we are empowering the families to make decisions for themselves. So, this is the number one principle of bioethics of informed consent versus what was happening with the eugenics movement in which those that advocated for the use of eugenical sterilization, were the ones that were making the decisions. Now I will say that the epilepsy panels, it is true that bring information that families may use for family planning, they are also used to make treatment decisions. So, that is definitely another benefit of those panels. And the last thing I'll say is that bringing information, giving the families an answer as to why their child has epilepsy or for that matter, any other condition, brings a certain level of course, of understanding and also may bring to an end what is called the diagnostic Odyssey, where people don't really know what the problem is. And so they keep on trying to identify a reason because we want to know why. And the epilepsy panels help us potentially end that process have an answer for the family.

Host: So, if today's genetic testing is very different from what was proposed during the heyday of the eugenics movement; when did that eugenics movement in the United States end? Was it going on after World War II?

Dr. Weisleder: Yes. Unfortunately the eugenics movement continued. I can tell you that 27 states in the United States at some point. Had eugenics laws. States like California, Indiana, North Carolina, Kansas. California was the state that sterilized the most individuals upward of 10,000.

Host: So what exactly did the laws say? They've permitted involuntary non-consenting sterilization?

Dr. Weisleder: That is precisely what they would allow as for the sterilization of individuals. I mean, some of them might have had some decision-making capacity. Some may not have had it. Some were individuals that were in prison that were forcefully sterilized. The eugenics movement in the United States, I guess the official date that one can say was 2003, when finally the legislature in North Carolina repealed the eugenics law.

Host: That was the last one?

Dr. Weisleder: Yes, that was the last thing.

Host: So none of these laws are still on the books.

Dr. Weisleder: No, none of those laws are still on the books.

Host: Well, this is a fascinating history. Thanks so much for talking to us about it this morning. Is there anything else you learned that you think pediatricians or neurologists today ought to know based on your studies of the eugenics movement?

Dr. Weisleder: One of the things that I would like to mention is coming back to the fact that many neurologists were involved in the process, and how these were even individuals that had leadership roles in the International League Against Epilepsy and some of them, there's one in particular, William Lennox, of the leaders of the Epilepsy Societies.

And he was a eugenesist, although maybe didn't rise to the level of some of those that published a book and we still have a prize, an award in his name. So, the American Epilepsy Society has an award, in the name of William Lennox.

Host: Do you think we should take his name off that award based on his role in the eugenics movement?

Dr. Weisleder: I think so. I think that the award should be renamed. Yes. It is something similar to what the American Academy of Pediatrics has the Saul Krugman award.

Host: Well, with that controversial comment, we are going to need to wrap this up. Thank you very much. I've been talking to Pedro Weisleder, who's Professor of Pediatrics, a Pediatric Neurologist at the Nationwide Children's Hospital and Ohio State University. He's also Co-Chair of Nationwide Children's Hospital Ethics Committee. And he's been doing some research, amazing research on the role of neurologists in the eugenics movement. I am John Lantos and this is the Pediatric Ethics Podcast coming to you from Children's Mercy Hospital in Kansas City. Thanks for listening.