Questions & Answers about “Patient H.M.”

A Response to the Department of Brain and Cognitive Sciences at MIT

First, I’d like to express my condolences to Suzanne Corkin’s friends, family, and colleagues. She was a dedicated, talented, and passionate researcher, whose contributions to her field will never be forgotten.

For the last six years, I’ve been working on a book — Patient H.M.: A Story of Memory, Madness, and Family Secrets — that is, in part, about Corkin’s relationship with her most famous research subject, Henry Molaison, otherwise known as the amnesic Patient H.M. The book’s publication date was set long before Corkin passed away, and when I learned the sad news of her death, it was already in galleys. The book has taken me down a number of dark roads, and led me to raise a number of hard questions, including ones about my own family history. I believe that in journalism, as in science, your central task is to gather data and then do your best to interpret it, regardless of how uncomfortable your interpretation might make others.

The book — and a New York Times Magazine excerpt from it — have generated a range of reactions from within the scientific community. Yesterday evening, MIT’s James DiCarlo, the head of Corkin’s former department, issued a formal response. He outlined what he described as an investigation by MIT Professors John Gabrieli and Nancy Kanwisher into what he described as three allegations made in my article, and claimed that they had “found evidence to rebut each allegation.” What follows are their three points, along with my responses to them:

1. Allegation that research records were or would be destroyed or shredded.

We believe that no records were destroyed and, to the contrary, that Professor Corkin worked in her final days to organize and preserve all records. Even as her health failed (she had advanced cancer and was receiving chemotherapy), she instructed her assistant to continue to organize, label, and maintain all records related to Henry Molaison. The records currently remain within our department.

Assuming that the interview is accurately and fully reported by Mr. Dittrich, we cannot explain why Professor Corkin made the comments reported in the article. This may have been related to tensions between the author and Professor Corkin because she had turned down his request to examine Mr. Molaison’s confidential medical and research records.

Regardless, the critical point is not what was said in an interview, but rather what actions were actually taken by Professor Corkin. The actions were to preserve the records.

Why was this not fact-checked by the Times?

My reporting of the shredding was based entirely on Corkin’s own words, to me, on tape. I had no reason to disbelieve her. Here’s a recording of our exchange.

I hope the data has in fact survived, as that strikes me as the best possible outcome. The data Corkin and her colleagues collected from Henry while he was alive, complemented by the unprecedented digital and histological archive of Henry’s brain created after his death, would represent a historic and important resource, not to mention a fitting legacy and monument to Henry’s sacrifices. If the data does exist, I would like to know whether MIT intends to index it and make it available to the public or other researchers.

2. Allegation that the finding of an additional lesion in left orbitofrontal cortex was suppressed.

The public record is clear that Professor Corkin communicated this discovery of an additional lesion in Mr. Molaison to both scientific and public audiences. This factual evidence is contradictory to any allegation of the suppression of a finding.

The original scientific report (Nature Communications, 2014) of the post-mortem examination of Mr. Molaison’s brain included this information in the most prominent and widely read portion of the report, the abstract.

In addition, Professor Corkin herself disseminated this information in public forums, including a 2014 interview, posted on MIT News and subsequently elsewhere online, in which she said: “We discovered a new lesion in the lateral orbital gyrus of the left frontal lobe. This damage was also visible in the postmortem MRI scans. The etiology of this lesion is presently unknown; future histological studies will clarify the cause and timeframe of this damage. Currently, it is unclear whether this lesion had any consequence for H.M.’s behavior.”

Why was this public record evidence overlooked or ignored by the author and the Times?

In 2012, Jacopo Annese and his colleagues submitted a draft of a paper to Nature Communications which, among other things, challenged the widely accepted view that Henry’s lesion was limited to the medial temporal lobes, and revealed evidence of a previously unreported lesion in Henry’s frontal lobes. During the reporting for my book, I acquired early drafts of this paper, along with other documentation, which showed that Suzanne Corkin declared the paper not “publishable,” and then — after she and her colleagues were added to the paper as co-authors — asked that Annese remove all references to the frontal lesion, asserting that “any consideration of it would be highly misleading.” That sparked a long and heated debate — which is detailed and documented in my book — with Annese maintaining throughout that “there is a lesion outside the medial temporal lobes, it is conspicuous, and it should be reported.”

Both my book and the excerpt make clear that Corkin and her colleagues did eventually agree to allow the frontal lesion to remain in the paper. The fact that Corkin told an interviewer, after the paper’s publication, that “we discovered a new lesion,” doesn’t change the facts about the contentiousness that preceded the paper’s publication, or the repeated earlier efforts made by Corkin and her colleagues to excise the mention of the lesion altogether. This is all part of the record.

3. Allegation that there was something inappropriate in the selection of Tom Mooney as Henry’s guardian.

In her book “Permanent Present Tense” (2013), Professor Corkin describes precisely the provenance of Mr. Molaison’s guardianship (page 201).

Briefly, in 1974 Mr. Molaison and his mother (who was in failing health; his father was deceased) moved in with Lillian Herrick, whose first husband was related to Mr. Molaison’s mother. Mrs. Herrick is described as caring for Mr. Molaison until 1980, when she was diagnosed with advanced cancer, and Mr. Molaison was admitted to a nursing home founded by her brother.

In 1991, the Probate Court in Windsor Locks, Connecticut, appointed Mrs. Herrick’s son, Tom Mooney, as Mr. Molaison’s conservator (Mr. Mooney is referred to as “Mr. M” in the book because of his desire for privacy.) This family took an active interest in helping Mr. Molaison and his mother, and was able to help place him in the nursing home that took care of him.

Mr. Dittrich provides no evidence that anything untoward occurred, and we are not aware of anything untoward in this process. Mr. Dittrich identifies some individuals who were genetically closer to Mr. Molaison than Mrs. Herrick or her son, but it is our understanding that this family took in Mr. Molaisonand his mother, and took care of Mr. Molaison for many years. Mr. Mooney was appointed conservator by the local court after a valid legal process, which included providing notice of a hearing and appointment of counsel to Mr. Molaison.

Why was this contravening evidence not sought, considered, or presented by the author and the Times?

The questions surrounding informed consent in Henry’s case are among the most important questions I raise, in both the book and the article. From at least 1981 until 1992, according to information I received from Corkin herself, Henry was the only person signing his informed consent forms when he visited MIT’s Clinical Research Center, where he would reside as a live-in test subject for as long as a month at a time. Corkin ultimately recognized that Henry’s profound amnesia might make it hard to argue that the experiments she and her colleagues were conducting on Henry were properly consented. As she wrote in a statement that she provided to me, “his difficulty in retaining new information raised the nagging question of how we obtained consent.”

So, in 1992, in consultation with MIT’s lawyers, and in pursuit of what she described to me as “another level of security,” Corkin arranged for a third cousin, Tom Mooney, to apply to become Henry’s court-appointed “conservator.” Mooney was granted the position on the basis of being Henry’s closest living known relative, and for the rest of Henry’s life, Mooney signed Henry’s informed consent forms, which allowed the experiments at MIT to continue. Apart from signing those documents, Mooney apparently had little contact with Henry. When a lawyer conducted a follow-up review of the conservatorship in 1996, she reported that she had “attempted to contact Mr. Mooney without success. The nursing home has indicated to me that they also have had no contact with Mr. Mooney.” By that time, Tom Mooney had long since pre-authorized the posthumous donation of Henry’s brain to MIT and Mass General Hospital, signing a brain-donation document that read, in part: “I, Thomas F. Mooney, am the court-appointed guardian of the person of Henry G. Molaison. I also presently am Henry G. Molaison’s closest living relative, and as such I am entitled by law to control Henry G. Molaison’s remains upon his death.”

The problem is, Mooney was never in fact Henry’s closest living relative. As I discovered, there were several much more closely related individuals — first cousins — living near Henry, none of whom were aware of the research being conducted on Henry, and none of whom had been consulted about either that research or his brain donation. It would not have been difficult for Suzanne Corkin and MIT to find Henry’s real next of kin. After all, I did.

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