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This is: Personalized Medicine For Real, published by sarahconstantin on the LessWrong.
I was part of the founding team at MetaMed, a personalized medicine startup. We went out of business back in 2015. We made a lot of mistakes due to inexperience, some of which I deeply regret.
I’m reflecting on that now, because Perlara just went out of business, and they got a lot farther on our original dream than we ever did. Q-State Biosciences, which is still around, is using a similar model.
The phenomenon that inspired MetaMed is that we knew of stories of heroic, scientifically literate patients and families of patients with incurable diseases, who came up with cures for their own conditions. Physicist Leo Szilard, the “father of the atom bomb”, designed a course of radiation therapy to cure his own bladder cancer. Computer scientist Matt Might analyzed his son’s genome to find a cure for his rare disorder. Cognitive scientist Joshua Tenenbaum found a personalized treatment for his father’s cancer.
So, we thought, could we try to scale up this process to help more people?
In Lois McMaster Bujold’s science fiction novels, the hero suffers an accident that leaves him with a seizure disorder. He goes to a medical research center and clinic, the Durona Group, and they design a neural prosthetic for him that prevents the seizures.
This sounds like it ought to be a thing that exists. Patient-led, bench-to-bedside drug discovery or medical device engineering. You get an incurable disease, you fund scientists/doctors/engineers to discover a cure, and now others with the disease can also be cured.
There’s actually a growing community of organizations trying to do things sort of in this vein. Recursion Pharmaceuticals, where I used to work, does drug discovery for rare diseases. Sv.ai organizes hackathons for analyzing genetic data to help patients with rare diseases find the root cause. Perlara and Q-state use animal models and in-vitro models respectively to simulate patients’ disorders, and then look for drugs or gene therapies that reverse those disease phenotypes in the animals or cells.
Back at MetaMed, I think we were groping towards something like this, but never really found our way there.
One reason is that we didn’t narrow our focus enough. We were trying to solve too many problems at once, all called “personalized medicine.”
Personalized Lifestyle Optimization
Some “personalized medicine” is about health optimization for basically healthy people. A lot of it amounts to superficial personalization on top of generic lifestyle advice. Harmless, but more of a marketing thing than a science thing, and not very interesting from a humanitarian perspective. Sometimes, we tried to get clients from this market. I pretty much always thought this was a bad idea.
Personalized Medicine For All
Some “personalized medicine” is about the claim that the best way to treat even common diseases often depends on individual factors, such as genes.
This was part of our pitch, but as I learned more, I came to believe that this kind of “personalization” has very little applicability. In most cases, we don’t know enough about how genes affect response to treatment to be able to improve outcomes by stratifying treatments based on genes. In the few cases where we know people with different genes need different treatments, it’s often already standard medical practice to run those tests. I now think there’s not a clear opportunity for a startup to improve the baseline through this kind of personalized medicine.
Preventing Medical Error
Some of our founding inspirations were the work of Gerd Gigerenzer and Atul Gawande, who showed that medical errors were the cause of many deaths, that doctors tend to be statistically illiterate, and that systematizing tools like checklists and statistical prediction rules save...
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