Holding His Narrative Hostage

His name was mentioned in over 12,000 journal articles. Early descriptions of his brain were the first attempts at memory research. After his autopsy, his brain was sliced into 2,401 70-slices and uploaded to create a three-dimensional model of his brain while 400,000 viewers watched on a livestream. After his brain was sliced up, there was a fierce intellectual property battle over who had the rights to keep the brain slices themselves. It ended when M.I.T. produced a 15-year old document in which the patient’s appointed guardian signed off the brain to the institution. Who was H.M.? And why did scientists fight a war over the research they conducted on him?

Henry Molaison lived with “perfect amnesia” for the last five decades of his life and became the most important research subject in history. In Luke Dittrich’s book, Patient H.M., he explores the history of Patient H.M.’s procedure, his treatment as a research subject and a patient, and the ethicality of the research done on him during and after his life. Luke Dittrich is an author and award-winning journalist who specializes in feature writing. His novel asks us to question who controls the narrative of a research study in today’s research environment: the scientists or the information itself? It calls into question the interpretations we make on the research that has been conducted and the conclusions we may draw from them that broadly influence our society. On September 28, I interviewed Luke Dittrich to try to answer this question.

Ishaan: [00:00:26] Give us some background on your latest book, Patient H.M.

Luke: [00:00:41] Patient H.M. is the story of the man who was arguably the most important human research subject of all time. Henry Molaison was severely epileptic and in the early 1950s received an experimental brain operation to treat his epilepsy. It didn’t do much for his epilepsy, but what it did do was render him almost completely amnesiac for the rest of his life. He could not retain new episodic memories…A lot of what we know about how memory works at a physiological level stems from six decades of research that was conducted with Henry post-operatively…My grandfather was the surgeon who operated on him. I tell the story of Henry, but I also tell the story of my grandfather and how he came to perform that momentous operation.

Ishaan: [00:02:22] In a review of Patient H.M. published in AAAS (American Association for the Advancement of Science), there was a professor, Laura Stark, who said you had a personal vendetta against the lead scientist who took care of patient H.M., Suzanne Corkin. Why do you think the scientific community questioned your credentials after you published Patient H.M.?

Luke: [00:02:54] This is a story about conflicting narratives, and the [scientists are] the people who managed and controlled the research conducted on H.M. They also controlled his life in many ways. There was a principal investigator, Suzanne Corkin, who passed away sadly just before the book was published. She managed H.M.’s scientific career for about a half century and also managed in a lot of ways his personal career and was the ultimate sort of gatekeeper to H.M…A lot of the people who objected to my book most vociferously were people who had personally built their careers on the broken mind of Patient H.M., and I discovered during the course of my reporting many questionable ethical decisions that were made in in their pursuit of knowledge when it came to H.M. I think there are serious questions of informed consent. I think there are serious questions of data integrity and data preservation. I know that MIT never sufficiently responded to the allegations…I have an extended transcript of Suzanne Corkin detailing to me how she shredded H.M.’s data…

Ishaan: [00:06:25] In the New York Times article, Suzanne Corkin described her reaction to Patient H.M.’s autopsy as “ecstatic.” To what extent was H.M. a research subject and to what extent was he a patient? Who was taking care of his health and well-being while this intense research was being conducted on him? Was he allowed to live on his own terms and live a fulfilling life?

Luke: [00:07:01] This is a central question at the heart of my book. Many of the problematic actions that my grandfather took were because he was a man who straddled this divide between medical practice and medical research…Patient H.M. is a product of this attempt to wear both hats…In the moment that my grandfather chose to perform the bilateral medial temporal lobectomy, Patient H.M. shifted from being a person who my grandfather was trying to perform a therapeutic intervention on into being a research subject. For the MIT researchers, led by Suzanne Corkin, he was a complicated figure as well. They were day in and day out generally nice to him but ultimately he was a person who they built their careers upon their exclusive and fairly unfettered access to him.

And to the question of whether he could consent…I think that because my grandfather removed not just his hippocampus which means that he couldn’t lay down episodic memories but he also removed his amygdala (which means patient H.M. tended to be docile and passive), if you put a sheet of paper in front of him and say “sign this” he was going to tend to sign it. Henry for a period of more than a decade…was the only person signing his informed consent forms.

Ishaan: [00:10:07] Was there anyone who was taking care of him outside of the lab?.

Luke: [00:10:14] …There was this period of time where he was his own guardian signing his own consent forms. MIT ultimately realized that that was problematic and so they asked for a man to apply to the court’s to become Henry’s conservator. That man (Henry’s third cousin) claimed to be Henry’s closest living relative. It was not the case. His closest living relatives were around and never consulted.

Ishaan: [00:11:32] How was Henry able to indicate that the other guy, the third cousin, was his next of kin?

Luke: [00:11:45] Henry lived a life where it was difficult to be aware…I think most kind of evocatively and poetically patient H.M. described to Brenda Milner that he felt like he was “like waking from a dream…every day is alone in itself.” That’s his life. Those hazy moments. Yeah. It’s almost like a horror story in some instances. Not that he was miserable. Yeah, I think he wasn’t miserable. I think maybe moment to moment he had sadness but he certainly wasn’t aware in the sense that we are.

Ishaan: [00:13:38] Concerning Suzanne Corkin’s comments about “shredding Patient H.M.’s data,” what is the appropriate line between openly publishing data and leaving research data to the process of peer review?

Luke: [00:14:13] In Henry’s case, a lot of the data that we are talking about is quite old. He was somebody who we studied for ages. There may not have been any legal requirement for to keep that data you produce regardless whether it’s published or not…Nevertheless, legal or not, the idea of knowingly consciously shredding the data not just of any research subject but of the most important human research subject of all time, struck me viscerally as the wrong thing to do, and I think that it struck most scientists who would read that bit say that’s not the right thing to do. Patient H.M. is so important to our understanding how memory works and it costs us nothing to preserve the data. Why not preserve it? It may be of use to someone else later.

Footnote: This interview is abridged. A full transcript will be available online.

Mr. Molaison’s story reveals a dark, underreported debate concerning how to conduct ethical research. Clear throughout Patient H.M’s entire story is a deep, institutional incentive to control the significance of the research conducted and the conclusions scientists derive from the data itself. From the way data was handled by researchers to the way H.M’s consent was adjudicated, it is clear that the priorities of those who had the most access to H.M. were their own scientific careers and not the accurate dissemination of novel information. His story asks us to critically evaluate the conclusions we can draw from research conducted today and yesterday given the biases inherently present in published research.

Ishaan Shah ‘20 studies in the College of Arts & Sciences. He can be reached at ishaanshah@wustl.edu.