“In a network, we accelerate our evolution as a species, until reimmersing ourselves in the here and now.” — John Kellden
Stuart A. Kauffman tells the story of Gertrude the flying squirrel, in which a squirrel some 63 million years ago emerged with flaps of skin connecting wrists to ankles. The ability to leap out of a tree when being attacked from above conferred survivability and hence the ability to reproduce. But, what were those flaps of skin? Kauffman suggests that nature explores the adjacent possible, a means to increase diversity. In a very strong sense, I believe that Star Trek gave us a glimpse at the adjacent possible. I believe that CBS’s show Pure Genius is doing so again.
As a cancer survivor, I view the show through a lens that is different from those who watch for, say, entertainment, storyline, acting, and so forth. Before I answer the question “what does Pure Genius mean for me?”, let me paint a picture of the origins of my lens. I grew up in the age of Sputnik, and later, moon landings. Moonshots have real meaning for me. The term “moonshot” has come to mean, in a very real sense, what we see when an American football player tosses a so-called Hail Mary pass: a lot of calculation and experience lies behind tossing a football far downfield, but there remain so many unknowns that, at the very least, a lot of adrenaline flows. Locker room chatter in my experience was more about rocket nozzle design, debating which rocket fuels had the highest specific impulse, that sort of thing. Yes, I hung a slipstick on my belt in high school. John Glenn became a hero back then; still is. In a very large sense, I identify with James Bell.
When I visited my sister’s display of a dissected frog during open house in high school in 1960, I decided that biology was never going to be a topic of interest. In 1983, two days before my father passed away, his hematologist told me that I had nothing to worry about since Leukemias are not familial; the stage was set. Six years later, I was diagnosed (dx in doctor-speak) with a Leukemia. My sister told me that my father’s initial dx was the same as mine. Overall, since my father and I were visited with Leukemia, and research reveals other father-son and mother-daughter pairs with the same experience, so much for Leukemias not being familial; there were, and remain many unanswered questions. I abandoned my earlier disinterest in biology and began to do what nerds do best.
When my diagnosing physician told me he was “cleaning me up for a bone marrow transplant”, out of the blue, I asked “What about interferon?” He said, and this struck me as odd, “You’re not a candidate for interferon.” What did that mean? When the Leukemia Society sent me a copy of their latest research report a week later, I learned there were clinical trials testing interferon on the same Leukemia I had. I phoned the lead physician, Hagoop Kantarjian at the M.D. Anderson Cancer Center; imagine my complete surprise when he picked up the phone! He stated that I could take interferon outside the trials on an “off label” basis because it was already approved for Hepatitis. I switched physicians to one who said he would go along with my use of interferon if I would agree to his interest in preparing me for a transplant. I agreed.
Three months later, the interferon brought me into “clinical remission”, which is nowhere near full remission; clinical remission is based on simple return to normal values in lab blood tests, whereas full remission is determined by sustained absence of DNA damage under extremely sensitive molecular studies.
During the course of my therapy, during which I did my own research, I engaged other hematologists in deep conversations, attended an annual American Society of Hematology meeting during which I presented my data to some physicians and got responses like “I’ve never seen a history like that”. That’s because the data I presented, which was that of the Leukemia equivalent of “tumor size”, specifically, the number of cells with damaged DNA in a sample of 20 bone marrow cells, clone counts, rose in summer and fell in winter; the graph reminded me of a stock market ticker in a “pennant” pattern. Clinical trials were reporting that some 20% of all patients in the trial achieved full remission (no damaged DNA) within the first year. I was well beyond that year. I suspected that the seasonal component might submit to Prozac. It did, and I eventually achieved full remission with interferon. Today, there is a pill for the variety of Leukemia I had.
The pill, Gleevec, became an adjacent possible for me when my personal physician, not the diagnosing physician, said during my early morning phone call to him revealing my new dx, “They’ll have a pill for that in three years!”. Turned out more like six years, but, the pill was not out of clinical trials and available to me until after I was already in full remission.
Experience taught me that one cannot know enough about that which might still be busy trying to take one’s life. So, today, I work on projects related to what I call knowledge gardening with open source Watson-like software; harvesting and understanding the biomedical literature is my primary focus. I would like to promote active exploration of the adjacent possible.
That history, in doctor speak, hx, shaped my lens.
Along comes a strong recommendation from my sister to watch Pure Genius. I found it online, watched the pilot and and other episodes, and everything else I could find about the show. Watched all episodes several times. As I complete this manuscript, I have seen every episode up to 7. Here is why I am hooked.
I view the show as a refreshing kind of populism, which I call cerebral populism. Never mind the show is loaded with romantic tensions and a genius with occasional immaturities and a use of facial expression that rivals that of Harrison Ford; the show is red meat for nerds.
I am not bothered that the show necessarily compresses biological events which play out in days to weeks into the 40 minutes of an episode. But I am aware that some opinions of the show run to the narrative “Obscenely wealthy genius takes over medicine”. I acknowledge the sentiment, though I see the show differently. I see the wealthy genius component of the show as a vehicle by which a profoundly different narrative plays out. How do I view that narrative?
I chose that John Kellden quote because it says what I see. Firstly, the pilot opens with messages about no offices, and everyone shares authority. That’s in line with definitions of networked leadership, a different paradigm from hierarchical command and control. The best example thus far lands in episode 2 where Dr. Malik makes a snap decision to ship a kid with crushed legs not to County General, but instead, to, aptly named Bunker Hill. An analogy would be a general taking direction from a lieutenant performing surgery in the field. The show, it seems to me, portrays an imperfect version of that; many actions still remain subject to the whims of the hospital’s leader, James. Why does networked leadership matter?
I believe that networked leadership is one dimension in the space of innovation, creativity. Douglas Engelbart, one of the pioneers of hypermedia and human augmentation through computer mediation, articulated a vision which can, in my view, be summed up this way: humans, their knowledge, and the tools with which they collaborate and learn, must, at once, be networked, and co-evolve. He referred to networked improvement communities, and gave a larger name to the ensemble: dynamic knowledge repository. I have been using the term knowledge gardening to refer to the same process. It’s easy for me to view Bunker Hill as a participant in a much larger knowledge garden, say, right alongside entities dealing with climate change, politics, and more.
That is, I believe that Pure Genius teases us with an adjacent possible, a shadow future, if only…
In that view, the fact that a core premise of the show is that of a genius billionaire creating a space to play is really a literary device on which to allow asking what if questions. When Dr. Wallace’s wife said to him “James Bell is the reason why we need regulation. He’s the reason for the FDA”, red flags went up for me. Yes, but Bunker Hill is an adjacent possible, worthy of deep conversation. In a sense, it is a beacon of hope; perhaps the hospital should have been named Beacon Hill. It starts conversations we should be having.
Besides, where else have you seen fishbone patient history diagrams, obviously painted by powerful artificial intelligence? That aspect of adjacent possible is already in play; open sourced artificial intelligence software is emerging everywhere, from connectionist machines which play Go and learn how to read, to open source variants of IBM’s Watson. While Beacon Hill is an instance of Engelbart’s improvement community, the U.S. Department of Health & Human Services is busy networking rural health clinics; perhaps a future exploration in Pure Genius will be to grow an instance of Engelbart’s networked improvement community. And, open sourced AI programs will federate with commercial AI platforms like the Watson and Kyndi clouds to more fully democratize science, health, and even governance. Deep conversations, indeed.
To be sure, the show plays havoc with HIPPA, the U.S. Health Insurance Portability and Accountability Act, but, through my lens, it teases us to ask what if, and in particular, what if HIPPA rules could be altered such that physicians, patients, and researchers could have way easier pathways to conversation, as seen in episodes. During the course of my Leukemia visitation, my hematologist was always happy to give me copies of my lab reports and so forth, but when I picked up some lab data to carry with me to an office visit, it was sealed in an envelope, which I opened in front of the lab attendant. When I arrived for my office visit with my data, I was scolded; seems the lab phoned the physician’s office to report my opening the data.
Today, my HMO does grant me full access to my data, a far cry from earlier experiences, but nowhere near that which is portrayed in Pure Genius. A psychological aspect of cancer survival derives from trust: trust in those with whom you consult for advice and therapeutic interventions, and trust in yourself to mount the requisite assault on your visitation. Raising the odds of improved outcomes, by which I mean, my outcome depends, in my view, on personal ownership of the visitation. My reaction to watching such powerful real-time displays of patient data on the big screen of an active wall in a patient’s room is one of pure envy; I find myself fantasizing what it would have been like for me to engage with my own data in such richness and with physicians who have the time to dive, with me, into that richness.
Do I have any concerns? Certainly. The show opened with hints of long-term romantic relationship evolution, providing a kind of coherence glue that binds episodes, but, in my view, that will not be enough. The show, if it truly honors organismic systems, must present feedback of both short term (happy endings each episode) and long term — what happens to the kid with spider webs in his legs? — as well as negative; episodes in the future need to deal with failures of kinds far more dramatic than a solar flare causing a failed remote surgery on a dummy, lessons learned, that sort of thing.
The seventh episode gets close; it dealt nicely, though not in a satisfying (for me) way with the fact that a rapid concoction of custom antibodies injected into a Leukemia patient had an unanticipated and undesirable outcome. Of course immune response modification similar to that was already well documented in Stephen Rosenberg’s book The Transformed Cell, but there are also cases in which a Leukemia was beaten back by one chemical only to return as another manifestation. That the patient, a young woman wise beyond her years, managed, very nicely, to cut off James’ enthusiastic push for a cure, as well as deal with his own issues, was a graceful script, but the show did not satisfy my desire to see how they learn from the failed therapy. Still, the kinds of biomedical exploration going on in the Pure Genius script are reminiscent of similar Hail Mary events in real life.
Given the Bunker Hill ability to just drop a homemade widget deep into someone’s brain without any clinical trials makes it a bit confusing why James went for FDA approval on a molecule for his own visitation. I fully expect James will find a way to try it in spite of the legal holding pattern. Season finale?
I look forward to episodes in which the Bunker Hill staff engages with patients who are nerds like me, people who are of the Quantified Self mindset, who wear Fitbits and the like, who read food labels watching for high-fructose corn syrup in the ingredients, who search PubMed for information and avoid health websites given to click-bait headlines. Those patients will present issues way beyond those of concerned blood relatives or spouses.
A final concern: I shall always be curious how this show will remain fresh. For me, Pure Genius plays strongly to the moonshots narrative; we need those, for they are the stuff of Epic Quests. Epic Quests, like those of role-playing games like World of Warcraft, can be conducted in the context of global problem solving; my friends and I are busy bringing up open source platforms to support global knowledge gardening through the conduct of epic quests. It is our intention to join the likes of Debategraph, the U.S. Navy’s MMOWGLI and the IFTF’s Foresight Engine, and open access journals like Public Deliberation, and organizations like The National Coalition for Dialogue & Deliberation, all supporting large scale conversations about matters that matter.