DIY Clinical Medicine
I read, then lost track of, a claim on LinkedIn by a scientist who said that last summer he developed, engineered, produced, and dosed a good friend with a personalized cancer vaccine. The friend was in complete remission by Christmas.
I wish I had the link; some readers won't believe the claims, and I'd like to learn more. What did resonate was that DIY Biotech is becoming increasingly available and easy. BosLab (DIY Bio) in Boston was one example I knew; YouTube has lots of DIY CRISPR videos. Some are concerned that bioterrorists are using bio-hacking tools readily and inexpensively available online, or that someone will try to endow themselves or their offspring with special abilities.
But DIY cancer vaccines are possible; high resolution sequencing, peptide synthesis, and adjuvants are all available without license or oversight required. There are online manuals for making your own vaccine for two specific EGFR mutations. Some believe that individuals - us - need to respond aggressively to a broken health management strategy, a strategy aimed at helping the greatest number of patients with the least effort. Who will develop a cure for one patient if not the patient and family?
Patient networks are increasingly powerful in directing research, through political action, financing, and manipulation of public opinion. And information sharing among these groups is arguably more intense and open than in academia. Some argue that innovation is more likely to happen with participation of these highly involved groups.
There's a long history of self-experimentation in medicine, with famous examples like the first self-cardiac catheterization and the linking of Helicobacter pylorii to ulcers. Eleanor Pauwels, a bioethicist at Harvard's Wilson Center, points out in an article in Gizmodo that
“There is no turning back,” she said. “We’re on our way out of the paternalistic system of medicine. We have more and more tools being democratized and eventually patients are going to be aware of places like DIY biolabs. The question is how can we limit some of the more extreme examples of self-experimentation and things going wrong?”
We might engage in long discussions around this question of "where's the line?". My guess is it's not going to matter. Not sure how I feel about that.