Last month, I reviewed an advance copy of "Patient H.M.", the new book by journalist Luke Dittrich that looks at the story of the amnesia patient Henry Molaison, perhaps the most famous case study in neuroscience. ("Patient H.M." has now been published.) Shortly after posting my review I interviewed Dittrich and this post presents this interview. Note: this interview took place on July 20th, before thecontroversyarose over an August 3rd New York Times article containing extracts from “Patient H.M.”.
Psychosurgery and the background to H.M.'s case NS: “Reading your book as a neuroscientist, there were a number of things that I found interesting. First off, you write about your grandfather, Dr Bill Scoville, the neurosurgeon who operated on H.M., and in the course of the book you uncover things that, at least to modern sensibilities, are fairly disturbing - in terms of psychosurgery and even human experimentation. What was it like for you to discover those things? LD: “On a personal level it was at times very painful, both to discover them and then to realize that I was going to have to write about these things. Now, I’ve done a lot of investigative journalism in the past, but very rarely do the things I write about hit so close to home, and affect people so near and dear to me. This is the first time that what I’m writing in a very tangible and visceral way caused pain to my mom, for example. I had deep reservations about bringing some of these things to light. For instance, my grandmother’s struggles with mental illness, and what was done to her, plays a big part in the book, and yet she was an intensely private woman. The idea of dragging her worst days into the light was something I struggled with.” NS: “It’s interesting to read, in the book, about the psychiatric treatments that were used in those days. It’s a reminder that it was a completely different era, in the 1940s and 1950s...” LD: “I try to be fair to my grandfather, and I try to avoid too much present-ism. It’s very easy to be aghast at what we did five years ago, let alone 50 or 60 years ago. There were very desperate measures being taken, but in a real sense they were desperate times. To be in an asylum then was to be in a very overcrowded place where the treatments, even prior to the lobotomy, were often brutal. The lobotomy came along, and men like my grandfather hoped and believed that they would be doing good with it. They believed that the alternative was worse. But I don’t think this entirely lets them off the hook. Lines were crossed... One of the most troubling things about that era is that it was an era when the line between medical practice and medical research was completely blurred. I open the book with a quote from Paul Bucy who was a scientist and a neurosurgeon: “man is certainly no poorer as an experimental animal merely because he can talk.” That says a lot about what was going on in those days. There was a kind of gold rush where people realized that psychosurgery provided a justification, slender and rickety as it may have been, to apply the very same kind of brain lesion experiments that had previously been used on animals, to human beings”. NS: “It was only on reading your book that I learned that Bill Scoville was the second most prolific psychosurgeon in America, and an active promoter of psychosurgery. That’s not well known in neuroscience circles in the context of H.M., although last year it was touched on briefly in a paper by Sue Corkin." LD: “Right, it’s not part of the standard narrative of Patient H.M. That said, H.M.’s operation was not a typical psychosurgical operation, because it wasn’t meant to treat mental illness, but it can’t be understood outside the context of the psychosurgery movement. That’s an important and neglected part of the story.” NS: “Another thing that surprised me was that H.M. wasn’t the first person to undergo the surgery that he had (the bilateral temporal lobotomy.) It was used on psychiatric patients as well.” LD: “There were about a dozen patients who had the same operation or its variations, the so-called limbic lobotomy. A handful had lesions as profound as H.M.’s, and as far as we can tell those patients suffered the same catastrophic amnesia, tragically. But they were so deeply disturbed to begin with, plus they were locked away in asylums, that their deficits just weren’t noticed. Until Brenda Milner, the brilliant neuropsychologist at McGill, came in, several years later, and met these people and revealed the extent of their amnesia. But H.M. was critical because unlike the other patients he had no psychosis, and also the extent of the bilateral lesions that my grandfather had removed was known (although it turned out that my grandfather’s estimates were not entirely accurate).” H.M. and informed consent for research NS: “Moving from the scientific to the ethical side of things, your book raises the question of the ethics of H.M.’s long involvement in research. One of the things you report is the the remarkable story that someone named Tom Mooney claimed to be H.M.’s cousin in order to become his legal conservator...?” LD: “He claimed to be his closest living next of kin, and then in court papers he’s described variously as being a cousin and as a nephew of H.M. I don’t think he himself described himself as Henry’s nephew, but he did describe himself specifically as his closest living relative. His particular relationship to H.M. remains unclear to me, I looked at H.M.’s family tree for several generations and didn’t locate him on it, but I can definitively say that he was not the closest next of kin. Henry had multiple living first cousins, living nearby, who had not been consulted, at the time Tom Mooney became conservator.” [NS note: in a recent post, Dittrich describes Mooney as a third cousin.] NS: “You also discuss how H.M. was the sole giver of consent for the research he took part in during a period when he didn’t have any conservator.” LD: “Yes, it was after H.M.’s parents both had passed away. Prior to that, one of them would sign the forms, then there was a short period of time when Lillian Herrick, who may or may not have been a distant relation of Henry's, she was the mother of Tom Mooney, she for a period of time signed the forms, although she had no legal custodianship. Then after she passed away, there was a period, from 1981 to 1992 I believe, or 1991, when Henry was the only one signing his forms. People can decide for themselves whether somebody with his deficits was really in a position to consent. The nature of his deficits wasn’t just memory, he also had docility and passivity, that arguably was related to the fact that his lesions encompassed the amygdala; amygdala lesions tend to have a pacifying effect on animals. So arguably he was neurologically predisposed to consent to things, which makes it an even more complicated question. Ultimately, it seems clear that MIT decided he was not able to consent, because they then actively pushed to get a conservator (eventually), and the first act of that conservator was to donate Henry’s brain.” The fate of H.M.'s data NS: “Many years later that donation led to controversy over exactly who 'owned' the brain. One of the main players in that story was Sue Corkin, and you also discussed with her the issue of unpublished notes and materials. In the book you write that she said she wanted those to be shredded after she died? That part was fairly shocking to me.” LD: “Yes, most of the transcript of that particular exchange is in the book. She said actually that she had already begun shredding quite a bit of the material, she had moved recently and the implication was she had all these boxes of H.M. data and she decided to shred them, and that she thought that most of what remained was probably going to be shredded in the future. That was, a pivotal shocking moment to me, on the tape of that conversation you can hear the shock in my voice when I heard that. Because to me, the whole point of taking such care to preserve and archive his brain, is to have an amazing histological and digital archive that could complement the unprecedented clinical dataset that they built up over six decades with Henry. I didn’t expect to hear that the data would be shredded. When I asked her why, she gave a series of answers that had me scratching my head, including that there’s no room for the data anywhere, that no-one would be interested in it, and one of the things she said that really stuck with me was that the data didn’t need to be preserved because the papers were out there and the papers represented the good data. But to me, the papers only represent the tip of the iceberg of the vast amount of data, and if possible there's no reason not to preserve it, so that we can reinterpret and re-illuminate in the future. Especially with such a pivotal, seminal figure as H.M., someone who ultimately sacrificed so much for us. But ultimately what happens if we destroy the data is that we lock in stone the prevailing narrative of patient H.M., which it became clear to me working on this book is not necessarily the most complete narrative.” NS: “Do you know what actually happened to the materials in the end?” LD: “I don’t know, the book was in its near-final form when Sue Corkin sadly passed away, and I haven’t circled back to see what happened with the data. I’d very much like to know." Rethinking the narrative of Patient H.M. NS: “You mentioned the 'prevailing narrative' of H.M. How do you think this needs to be rethought?” LD: “Good question. I believe that H.M. is still a critically important case and a very valuable research subject who taught us a great deal about ourselves. But it’s critically important when working with human research subjects that every step is taken to avoid violations of consent and other ethical issues. I think that these can’t help but tarnish the most revelatory findings. In my view H.M. is both an illuminating case and a cautionary tale. The ethical issues here began with the operation itself. Then there’s this unusual chain of custody, beginning with my grandfather who had an almost proprietary relationship to H.M., and he passed him along to Brenda Milner, who passed him along to Sue Corkin. And I think there’s an inherent difficult aspect of any relationship between a deeply damaged individual and a researcher, who is principal investigator in that case, when the researcher’s career might largely be built on his or her access to this patient, it creates a potential for a conflict of interest and a dangerous stew of motivations. I don’t know what the answer to that is, but I think clear hard oversight is important. I want to hasten to add that Suzanne Corkin is not here to defend herself, and I’m sure that, on a basic level, she cared for Henry a great deal. I’m sure it wasn’t cold on her part, after all she knew the man for so many years, but because she was a scientist in this situation I think she couldn’t help having feelings that reflected that. She herself said, on seeing Henry’s brain for the first time, the morning after the brain was harvested, she described herself as feeling ‘ecstatic’ to see his brain. It’s an unusual response. It does say something about that kind of relationship and the boundaries there. I think it’s inevitable that she developed these feelings, but they could lead to unwanted consequences. The question of anonymity is another issue. In scientific papers and case reports you don’t use the patient’s real name, so people don’t know that this particular individual is the one being written about. This protects the patient’s confidentiality certainly, but it also means that you can’t have outside people who monitor what the researchers are doing with these people. So it protects the privacy of the patients but it also protects the institutions that are doing the research. There’s a tension there I think.”