At the age of seven, Henry Gustav Molaison was involved in an accident that left him with severe epilepsy. Twenty years later, a surgeon named William Scoville tried to cure him by removing parts of his brain. It worked, but the procedure left Molaison unable to make new long-term memories. Everyone he met, every conversation he had, everything that happened to him would just evaporate from his mind. These problems revolutionized our understanding of how memory works, and transformed Molaison into “Patient H.M.”—arguably the most famous and studied patient in the history of neuroscience.

That’s the familiar version of the story, but the one presented in Luke Dittrich’s new book Patient H.M.: A Story of Memory, Madness, and Family Secrets is deeper and darker. As revealed through Dittrich’s extensive reporting and poetic prose, Molaison’s tale is one of ethical dilemmas that not only influenced his famous surgery but persisted well beyond his death in 2008. It’s a story about more than just the life of one man or the root of memory; it’s also about how far people are willing to go for scientific advancement, and the human cost of that progress.

And Dittrich is uniquely placed to consider these issues. Scoville was his grandfather. Suzanne Corkin, the scientist who worked with Molaison most extensively after his surgery, was an old friend of his mother’s. I spoke to him about the book and the challenges of reporting a story that he was so deeply entwined in.

Most of this interview was conducted on July 19th. Following a New York Times excerpt published on August 7th, and the book’s release two weeks later, many neuroscientists have expressed “outrage” at Dittrich’s portrayal of Corkin. The controversy culminated in a statement from MIT, where Corkin was based, rebutting three allegations in the book. Dittrich has himself responded to the rebuttals, and at the end of this interview, I talk to him about the debate.

Ed Yong: Given your family connections to the story, were you aware about ‘Patient H.M.’ growing up?

Luke Dittrich: It’s one of those odd facts about my relationship to the story: I don’t have a clear episodic memory about when I first learned about Patient H.M. I think I was told about him at one point by my mother but I don’t clearly remember when that was. I had a brief textbook understanding of the case, and my grandfather’s  involvement intrigued me.

Yong: How well did you know Scoville, your grandfather?

Dittrich: He died when I was 10, so not very well. He was always this larger-than-life figure to me, as many grandfathers are to 10-year-old boys—but he really was a larger-than-life figure in many ways. He was by all accounts a brilliant neurosurgeon, but he occupied this morally nebulous middle ground between medical research and practice. He was one of the most prolific lobotomists of all time. And as I discovered, he was driven by this passionate quest to develop a surgical cure for madness, because his wife—my grandmother—was herself mentally ill. Very few people knew about that, even within the family. Mental illness has always been stigmatized and even more in the 1940s and 50s than today.

Yong: The relationship between your grandfather and grandmother forms some of the most shocking parts of the book. You reveal her history of mental illness, describe the horrible ‘treatments’ she endured, and suggest that Scoville was motivated to lobotomize other patients in an attempt to find a cure for her. Did you agonize about whether to delve so deeply into your own family history?

Dittrich: I struggled with it. I’ve done quite a bit of investigative journalism but this was the first time I’ve experienced finding things out and knowing that they would hurt my mother. That wasn’t easy in any way. I loved my grandmother and she was a very private person. I certainly had reservations about dragging her most painful moments into the light.

But ultimately, I decided that it was a story worth telling. It’s really impossible to understand the story of Henry without understanding this long period of psychosurgery that led up to the experimental operation my grandfather performed. Given that my grandfather was this crusading psychosurgeon and his motivation was in large part my grandmother’s mental illness, she was an odd and unexpected part of the story. What she went through in the asylum is what tens of thousands of people endured.

Yong: Your grandfather comes across as a cold man, who “rarely indulged in introspection.” And at a crucial moment, with Henry’s brain open before him, he chose to carry out the riskiest possible operation, which ultimately resulted in Henry’s substantial memory problems. And yet, you also try to find some redemption for Scoville, describing your mum’s recollection of him as a good dad. Was that important?

Dittrich: It was very important. There are things I came across that really angered me, things that he did. But it’s easy to look down our noses at the past and be aghast as what people did five years ago, let alone fifty. As ghastly as the psychosurgical era can appear now, it also came out of a time of desperation.

There were no real good effective treatments for mental illness and asylums were overcrowded places. The lobotomy offered what at the time seemed to many people—and these were not fringe characters but some of the world’s leading scientists—to provide an easy quick fix. And my grandfather wanted that. He was desperate to find a cure. I do think that he crossed lines he shouldn’t have crossed but he’s not alone in having done so. And I’ve never saved a life; he saved many. In the grand equation, I don’t know where that puts him.

I think back to Thanksgiving dinners with my grandparents present and think about the unspoken secrets there at the table. It gives a different light to the experience. Our memories are constantly works in progress, and my own childhood memories were reshaped by the revelations in the book.

Yong: That seems to fit with a theme that runs through the book, about how flexible, fallible, and disjointed memory can be.

Dittrich: The book has a complicated structure and I’m sure some people will describe it as disjointed. But there’s something in that structure that spoke to me. Our memories are fragmented and Henry’s way of experiencing the world was fragmented and didn’t adhere to a Point-A-to-Point-B narrative structure.

Yong: Let’s talk about Henry. You spent a lot of time reconstructing the details of his life, his accident, and his treatment—an especially poignant task given the book’s themes about memory. What was that process like? And was it frustrating that you failed to track him down before his death?

Dittrich: Henry was an amazingly documented individual. There are so many paper sand transcripts of interviews, some of which are 100,000 words long. Even if you don’t have direct access to him, it’s possible to build a pretty rich second-hand portrait of him. That said, boy I wish I’d had a chance to meet him. There are certain documents or recordings that give me a hint of what it would feel like to sit in a room with him, but there’s no substitute for the real thing. From my understanding, there was this odd absence at the heart of him. He was locked in this endless moment. And no matter how much time a person spent with him, there was a certain unknowability.

Yong: You wrote that the first scientific paper describing Henry’s post-operative state was “the birth announcement of Patient H.M” and “also the obituary of Henry Molaison.” Did you feel like they were genuinely two different characters?

Dittrich: Yeah, I do think that in a certain sense, Henry ended on that operating table. Even the memories from before the operation were experienced by Henry in a very different way than we experience our past. He wasn’t able to build a narrative with a beginning middle and end. We’re a storytelling species and one of the things taken from Henry was his story. And one thing I’m attempting to do in the book, not to sound hyperbolic, is to give him his story back, or to take it back a little bit from the people who’ve had an interest in telling it in a particular way.

Yong: Which brings us to Suzanne Corkin. By your telling, she treats Henry in an almost proprietary way, glosses over his anxieties and unhappiness, and makes questionable decisions about informed consent. At the very end of the book, you reveal that she was in the process of shredding his files. It seems like the ethical problems in the story continue beyond the surgery.

Dittrich: The more I learned about those late-stage transgressions, the more appalled I was. Listening back to the recording of the exchange at the very end, where she tells me that she’s in the process of shredding Henry’s data, there’s disbelief in my voice.

But like with my grandfather, I think that it’s important for me and the reader to try to keep a nuanced view. In a lot of ways, she was very kind to Henry. She would send him birthday cards and would make sure that his needs were tended to. I don’t think that she ever consciously set out to hurt Henry but I think there was a fundamental troubling aspect to their relationship. In many ways, it was proprietary. Howard Eichenbaum, who’s an admirer of Corkin’s, told me that people who work with patients like H.M., who are unique and valuable research subjects, inevitably develop that sense of ownership. And once those feelings develop, they can grow into troubling behavior.

I’m not quite sure how to remedy that, but I think whenever there’s a human research subject, it’s so important that everything is looked at by independent people, and the hard questions of informed consent are asked.

Yong: And with Henry, questions of informed consent become very murky?

Dittrich: His ability to create new long-term memories was obliterated, but his amygdala was also destroyed, and it’s pretty clear that doing so made him much more docile and willing to consent to anything. Once you have a surgically pacified individual, can you say that such individual could ever give informed consent to being experimented on, when he has become predisposed to saying yes?

Yong: Was it difficult to uncover these problems given that Corkin was a family friend?

Dittrich: I remember when I called my mom up right after I got the book deal, the first words out of her mouth were: Oh no. I understand that. Corkin was one of her closest childhood friends and remained so, but their relationship was strained by me working on this book. Suzanne was someone I knew forever. She was around in dinner parties. But I needed to ask her some hard questions.

I feel like I’ve done my best to be fair to everyone involved as best I could. And I do think that it’s a story worth telling, despite the pain that it may cause.

Yong: How so?

Dittrich: Henry was a fundamental figure in our understanding of ourselves. Henry’s story—period—is an important story. It’s important to see how those sorts of scientific revelations come about, and to dig way deeper into the few sentences you see in a textbook. It’s a complicated and very human story, one with all the same jealousy and bitterness, and back-biting and possessiveness that you see in any industry. That aspect, looking at how  medical and scientific research actually happens… it was eye-opening to me, and I hope it will be to readers too.

Yong: In the book, you wrestle with what it takes to discover scientific knowledge. Having laid out Henry’s story in full, how do you weigh up the benefits of what he taught us against the costs that he personally paid?

Dittrich: I don’t think I or anyone else would want to take back what Henry taught us. At the same time, I have to say that when my grandfather was there in the operating room, looking down at Henry thinking about whether to sow him back up or to perform the operation, the best move would have been for him to not operate. But he did. And all sorts of consequences flowed from that—many great, and quite a few tragic.

I think we’ll always be balancing the individual tragedy against the common good and you see that in the history of all sorts of medical advances and leaps in scientific understanding. This was a case where the costs and benefits are very clear. I don’t think there’s a right answer and readers will need to decide for themselves if Henry Molaison should have been transformed into Patient H.M..

Yong: Did you expect the backlash from MIT and other neuroscientists who knew Suzanne Corkin?

Dittrich: I did certainly expect pushback. A couple of things I want to make clear: I understand that the timing is unfortunate, and it’s hugely sad that Corkin isn’t here and that she cannot directly respond to aspects of the book and the excerpt. But I’ve been working on the book for six years. I can totally understand friends, colleagues, and family members rushing to her defense. My condolences to all of them. As I said in one of my responses, my job as a journalist is to gather data and to do my best to interpret it. I did that, and the story I came away with is presented in the book.

The response from MIT seem to be trying to position this as a battle between me and Corkin, and I don’t see it like that at all. Corkin is just a sliver of the book. The story I’m telling is Henry’s story, my grandfather’s story, the story of this dark era of experimentation that led up to that.

I think I responded to the three points they made, and I think quite effectively. I think I raise serious questions about a lot of issues, including about informed consent. By pretty reasonable interpretation, it looks like what I uncovered is that the most important human research subject of all time was not properly consented, arguably since 1974. I think that gets lost.

The way it’s been positioned by the MIT response is that I’m a callous guy attacking someone who cannot defend herself. I think MIT ultimately has a lot of questions they should explore. I’ve challenged a story they’ve told in a very particular way for a long time, and rather than provoking an instant response, I hope it would provoke a degree of self-reflection.

Yong: In what way? What do you hope the impact of the book will be in the long run?

Dittrich: There are aspects of it that are extremely personal, and I’m still trying to figure out what I’m taking away from the whole process. It would be unfortunate if a controversy based on these very emotional responses drowned out what I think would be a very valuable self-reflection on human research in general.

H.M. is this hugely important, illuminating case. His story is one that raises important and troubling questions about how far we should go in our pursuit of knowledge and what checks and balances should be instituted in that pursuit. Those questions are alive, and there are no easy answers. I hope the book opens up the debate.