Some brief responses to the Sage Bionetworks Congress
I attended the first Sage Bionetworks Congress in 2010 and it left a powerful impression on my thinking. I have just attended the third congress in San Francisco and again the challenging nature of views, the real desire to make a difference, and the standard of thinking in the room will take me some time to process. But a series of comments, and soundbites over the course of the meeting have made me realise just how seriously bad our situation is.
- Attempts by a variety of big pharma to replicate disease relevant results published by academic labs failed in ~80% of cases (see for instance this story about this commentary in Nature[$])
- When a particular blood cancer group was asked what factor about their disease was most to them, they said gastro-intestinal problems. No health professional had ever even considered this as a gastro-intestinal disease.
- Jamie Heywood spent $25M of his own money on attempting to replicate around 500 published results that were therapeutically relevant to ALS and could not repeat the findings in a single case.
- A cancer patient, advocate, and fundraiser of 25 years standing said the following to me: “We’ve been at this for 25 years, we’ve raised over $2B for research, and new patients today get the same treatment I did. What’s the point?”
In a room full of very smart people absolutely committed to making a difference there were very few new ideas on how we actually cut through the thicket of perverse incentives, institutional inertia, disregard for replicability, and personal ego-stroking which is perpetuating these problems. I’ve been uncertain for some time whether change from within our existing structures and systems is really possible. I’m leaning further and further to the view that it is not. That doesn’t mean that we can’t do anything – just that it may be more effective to simply bypass existing institutions to do it.
- Sage Congress: The synthesis of open source with genetics (radar.oreilly.com)