The person who dissected his own brain

Original author: K McGowan
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Steven Keating likes to do everything himself. When he was not given access to his tumor data, he figured out how to hack the system.




Stephen Keating used to not be afraid of difficult tasks. He is a student at MIT Media Lab, specializes in 3D printing and synthetic biology, and describes himself as a “rare botanist.” As a teenager, he was keen on launching high-altitude probes and making Tesla coils, and now the hacker approach has helped save his life.

In 2014, he was diagnosed with a brain tumor the size of a tennis ball and recommended immediately to appoint an operation. He tried to find the best surgeon and found that the fastest way to disseminate the results of brain scans and medical data will work if he does it himself. He has already made a simple site so that you can share your data with relatives and friends; now he began to send this information to the doctors. He had to cut off quite a large part of the brain, and he decided that he would have more chances to keep the mind if he himself took responsibility for his own data.

Keating had a rare form of cancer, and, as with brain tumors, there was no universal treatment prescription. After surgery, he had to choose treatment options: x-rays, proton therapy, chemotherapy, or a combination of them. He wanted to know as much as possible about his tumor and his body - and that meant that he needed to access more data. The researchers and doctors with whom he spoke were willing to help him, but this was not always enough.



A team of surgeons from Brigham Hospital [Brigham and Women's Hospital] in Massachusetts recorded a 10-hour operation and gave him a video, so it was pretty simple. Scans of his brain took a few CDs, and this information was quite difficult to put online.

His collection was soon replenished with 40-therapic images of tumor tissue, genome decoding, MRI scans before and after surgery, microbiome analyzes before and after chemotherapy, and high-resolution video computed tomography of his wired skull — more than 200 GB of data available publicly.

But the report on the pathological anatomy of his tumor cells took up only three sentences. Before deciding on a treatment, he needed to know more. He wanted to see the fabric itself, but could not - by signing treatment papers, he agreed to give up the rights to research this fabric. “The tumor belonged to them for research,” he says. “I did not have access to it.”



That did not stop him. As an MIT student, he could enroll in a pathology course at Harvard, which was read by Brigham hospital staff. He signed up and, as a term paper, he analyzed his own brain, worked with slides related to his type of cancer, and studied most of the tissue. Based on his observations, he proposed a small change in the radiation treatment procedure that he was prescribed. (He said that the radiology department took his recommendations seriously, but decided not to make changes for safety reasons).

Uncertainties in the legislation created other problems. The genome of Keating's tumor was completely deciphered (in cancer tumors of its own, broken DNA sequences), but the researchers could not share information with it. Decryption was carried out on a device not licensed for commercial use, and therefore federal regulations prohibited the disclosure of such data. “This is nonsense,” he says. “I shared a part of my brain with them, but they can't share information with me?” As a result, the institute had to pay for re-decoding of DNA.

“I’m just shocked that the patient’s interests are put in last place,” he says. Keating began to speak about his adventures with data collection, and sometimes doctors from Brigham or their colleagues might attend the lectures. And right there, in the audience, they have access to Keating's medical records in a simple interactive format, even to the notes of the doctors to which Keating himself does not have access. It infuriates him.

Keating has already experienced many medical procedures, but has not finished yet. He turned into a crusader, seeking the discovery of data, writes petitions to the government about creating a standard portal where people can access their information and share it.

“The data can heal,” he says. “It was an amazing experience to understand what is happening to me.”

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