Read Patient H.M. Online

Authors: Luke Dittrich

Patient H.M. (41 page)

The arguments over the lesion and other aspects of the paper continued for months and devolved into acrimony. An outside mediator hosted a conference call, and eventually a compromise was reached. The frontal lesion would stay in the paper, though it wouldn't be featured as prominently as it had been in earlier drafts.

On January 28, 2014,
Nature Communications
published the article, “Postmortem Examination of Patient H.M.'s Brain Based on Histological Sectioning and Digital 3D Reconstruction.” Annese was the first author, but Corkin and Matthew Frosch were authors on it as well. The paper's published findings included the discovery of a “circumscribed lesion in the orbitofrontal cortex,” which was described as “new evidence which may help elucidate the consequences of H.M.'s operation in the context of the brain's overall pathology.”

The publication of the paper felt to Annese like a victory, but it may have been a Pyrrhic one.

—

Shortly after the New York City meeting, lawyers from MIT began negotiating with lawyers from UC San Diego, finally drafting a materials transfer agreement that would retroactively settle questions left hazy during the brain's move from Boston to San Diego. In the first draft of the contract, UCSD proposed an eighty-twenty split: That is, they would hold on to approximately 20 percent of the brain, including most of the slides processed by Annese's lab. The rest of the tissue would be given back to MIT, which planned to loan it to David Amaral's brain bank at UC Davis. MIT rejected that proposal, demanding that
all
of the material in question be transferred away from UCSD. “Materials” were defined as “the Brain, Unmodified Derivatives, and any other substances created through the use of Materials.” That would include the slides Annese had made.

On September 18, the chairman of Annese's department sent Annese an email:

“As you know,” he wrote, UCSD had “been negotiating with MIT's lawyers to try to let you keep at least 20% of H.M.'s material…unfortunately, they are adamant that they want it all back now, and will likely sue the university if they don't get it.” He added that UCSD's chief counsel had reviewed the matter and did not believe UCSD would prevail against MIT if such a suit were filed.

Six weeks later, the head of UCSD's department of research wrote MIT's lead counsel a letter in which she stated that UCSD agreed “to transfer all brain tissue to an MIT representative” and that she was “hopeful that this brings the matter to a mutually agreeable close.”

Almost five years after watching Jacopo Annese board that JetBlue flight in Boston, Suzanne Corkin had regained control of Patient H.M.

—

On February 5, 2015, Annese sat on the floor of his condominium and sorted through the slides of Henry's brain. The raw, unprocessed tissue samples were still in their refrigerators at the lab, but all the slides were there at home with him. They filled three boxes and fifty trays, 214 slides in all. He removed each from its tray, one by one, and inspected it carefully. He was looking for cracks, for decomposition, for any problems that he might have to alert the administration about. In the lower right-hand corner of most slides was a little laser-etched logo of his own design.
THE BRAIN OBSERVATORY
,
it read in cursive script. He hoped that Corkin wouldn't order these etchings scratched off, but he knew that was going to be out of his control.

One week prior, on January 29, Annese had submitted his resignation to UCSD. “I believe that, regretfully, this is the only way to provide a dignifying narrative to the changes in course of the H.M. project,” he wrote to the vice chancellor. He had decided he could no longer fight. He'd felt the university shift its support, felt that they weren't willing to fight for him. He could have continued fighting, on his own, and a part of him had wanted to. A part of him was screaming for him to. He'd even told the university's HR manager at one point that he'd rather go to jail than give up Henry's brain. The whole thing just wasn't right, he felt. Corkin had given him the brain, and he had poured years of his life into it. But he knew it was a fight he wouldn't win. It was a fight that would take lots of money, lots of lawyers. He couldn't do it.

He was giving up the brain. He had to let it go.

He'd worried about whether he could do so, when the time came. He'd worried about whether inspecting the slides would be too hard emotionally. He thought that looking at them, handling them, would be like pouring alcohol on an open wound. The truth was, MIT and UCSD were both worried about the same thing. After Annese resigned, he sent a letter to Maria Zuber, MIT's vice president for research, informing her of his resignation and telling her that he hoped they could “coordinate future steps involving the remaining tissue from Patient H.M.'s brain” and that his Brain Observatory might somehow play a continuing role. This was interpreted as a veiled threat to hold on to or destroy the parts of the brain that remained in Annese's possession and provoked a flurry of emails between high-level administrators and attorneys at the two institutions. “I am writing to memorialize MIT's grave concerns about the safety and security of all of the tissue of the brain of H.M.,” one MIT lawyer wrote to a UCSD counterpart. “Dr. Annese's email to Professor Zuber below indicates he may be taking unilateral steps to plan for the future of the tissue.” UCSD's emails back to MIT were placid on the surface but increasingly unsettled behind the scenes. “Sounds like you have had another crazy day of H.M. brain chaos,” one UCSD official wrote to another. “I think we all need a happy hour after this.”

Finally, Annese's former chairman reached out to him, then sent a reassuring note to his UCSD colleagues.

“I just got off the phone with Jacopo who was quite reasonable,” he wrote. “The only H.M. material that was transferred out of the RIL [Radiology Imaging Laboratory] were the slides which do not need to be refrigerated or anything. All the other material is still at the RIL, properly protected as always. He will meet you at the RIL with the slides at 4pm.”

Four
P.M.
was approaching fast, but Annese was taking his time packing the slides. Each one, to him, was a little work of art, the culmination of a career spent honing his skills, the product of so much accumulated work. He thought about the journey he'd been on over the past several years, from the crowded autopsy room on that winter's morning in Massachusetts to the odd cross-country JetBlue flight with the cooler on the seat beside him; from the cutting that he'd live-streamed to the world to the countless private hours spent in his laboratory at night, Ennio Morricone in his ears, teasing apart the little pink slices of tissue that floated in front of him, each finally coming to rest on a bed of glass.

He knew that it was his ego that made it so difficult to let go, that recoiled at the thought of Amaral and Corkin taking his slides, his data. He'd grown to believe that for Corkin, this fight was about control, and recognition, and that for Amaral it was about acquiring a very important collection that he didn't make. If he was being honest with himself, he'd admit that a part of him
had
considered holding on to the brain, or at least some of those beautiful slides he made with it. Annese's ego gave him a sense of entitlement and attachment. A sense of outrage, too. Now he tried to tamp it down. He'd taken up yoga recently. In his better moments, he could conceive of science as being a public trust. It wasn't easy, though. Everybody liked to talk about “open data,” but when it came down to it how many people could just walk away from what they'd spent years of their lives creating?

He had to try.

It was nearing Valentine's Day, and he'd been streaming an Internet radio station that had assembled a collection of anti–Valentine's Day songs, with titles like “Fuck You,” “Evil Woman,” and “Over You.” He inspected his slides, one by one, the bitter songs ringing in his ears. And then a funny thing happened: He realized he didn't feel as bad as he'd thought he would. He realized that somehow, somewhere, at some point during this long, strange odyssey, he'd already let go. Looking at the slides, he began imagining a moment five or more decades in the future, tried to imagine some eager and brilliant young student somewhere holding one of those pieces of histological art up to the light, appreciating it for the historic and gorgeous and mysterious object it would always remain, not giving a damn who owned or controlled it.

Later that afternoon, Annese put the slides in the back of a rented van, drove them to the former site of the Brain Observatory, and handed them over to the vice chancellor, who was waiting there with two campus police officers to make sure everything was accounted for.

—

Back in Corkin's office, I pressed for her side of the story, her perspective on the fight over the brain.

“I don't want to talk about it,” she said. “You know that we have a brain donation form, right? That says it all.”

“I'm curious about the paperwork. What was the—”

She cut me off.

“I can't talk about the paperwork,” she said.

I asked her about Tom Mooney, the man she'd arranged to become Henry's conservator, who had signed the brain donation form. On the form, Mooney had described himself as Henry's closest living relative. I asked whether she could tell me how, precisely, Mooney was related to Henry.

I had tried to ask Mooney the same question. I made numerous phone calls and even showed up on his doorstep once. He always made excuses for not being able to meet with me.

I asked Corkin whether she was aware that when Mooney became Henry's conservator and signed over Henry's brain, he was not in fact Henry's next of kin, that there had been a number of first cousins of Henry's living nearby at the time. I mentioned one of them, Frank S. Molaison.

“I was not aware of his existence,” she said.

I asked whether she had ever done any genealogical research at all into the man she had studied for almost a half-century.

“No,” she said.

“So,” I said, “you were not aware that Mr. Mooney was not his next of kin?”

“No,” she said.

I asked why she had started the process of finding a conservator for Henry in the first place.

“I just wanted another level of security. Another person who was not amnesic, and who had Henry's best interests at heart.”

I asked what she meant by “security.” Security from what?

“For Henry,” she said. “For MIT.”

And what were MIT's vulnerabilities?

“I don't know,” she said. “I'd have to ask our lawyers that.”

—

After the eighty-twenty deal collapsed, the MIT and UCSD lawyers continued to negotiate over a final point of contention: the high-resolution block-face images that Annese and his colleagues had acquired during the slicing. UCSD proposed that this data be kept on its servers, accessible to all but still the acknowledged property of the institution that had created it. MIT turned down this proposal. David Amaral sent an email to UCSD explaining why he also believed the digital data along with the physical materials should all be kept at his lab, under one roof.

“My major concern,” he wrote, was “that posterity judges us as good custodians of this precious resource.” He added that he was happy to acknowledge Annese's contributions to the analysis of H.M., but that he would “deeply regret” if portions of H.M.'s “data legacy were not put into a permanent, accessible resource because of politics or legal issues. We both grew up with H.M. in our textbooks and we need to work together to insure that the final chapter of his life and legacy is treated with respect and the highest scientific standards.”

Amaral's email was forwarded to UCSD's assistant vice chancellor, Marianne Generales, who forwarded it to a colleague along with a one-line comment.

“What a crock!” she wrote.

But in the end, UCSD did agree to that final demand: The digital data, too, would go.

It struck me that this was not necessarily a bad thing, and that Generales's comment may have been unfair. However you interpreted the conflict leading up to the removal of Henry's brain from San Diego, once that transfer happened, it seemed reasonable to want everything consolidated: all the material, all the data. This would make it easier for scientists to continue their analysis of Henry's brain, mining it for whatever last revelations it contained. Amaral's email, from that perspective, made perfect sense: Who wouldn't want H.M.'s “data legacy” to be put into a “permanent, accessible resource”?

Ideally, of course, that trove would include the data that had been collected from Henry while he was alive, all the experimental and observational information that scientists had extracted from him after he left my grandfather's operating room.

So toward the end of my interview with Corkin, I asked what
she
intended to do with her Henry files, the raw, experimental data she'd spent her career gathering. The whole idea behind preserving Henry's brain, after all, was to be able to compare and correlate his neuroanatomical data with the unprecedented amount of behavioral data that already existed in his case, most of it presumably stored away in Corkin's files.

M
E:
Are you aiming to give his files to an archive?

C
ORKIN:
Not his files, but I'm giving his memorabilia to my department. And they will be on display on the third floor.

By memorabilia, she meant his personal effects—his bible, his journal, his crucifix—all of which she owned. She also claimed copyright to every known family photo of Henry and his parents.

M
E:
Right. And what's going to happen to the files themselves?

She paused for several seconds.

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