Organizing the Open Science behind Open Insulin

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#1

The most pressing need now is to set up a patient cooperative for Open Insulin and how to prototype it.
And clear out the international collaboration that is now emerging in the open insulin research.

Some history of the project

Early 2015 in Counter Culture Labs, biohacker collective in Oakland, developed consensus around the idea that we could make insulin in a lab like their. The idea is worth pursuing, the technology is there. First it was a technical motivation, afterwards it was clear that insulin was a social and economical issue.

Many people don’t have access, it’s bad in the US. Only a few companies have the oligopoly on production globally (US, France, Denmark based).

There’s also the fragility of the supply chains. Only major producers in the West, which means that supply is easily disrupted in less developed or accessible regions. We need to rely less on shipping insulin around and maintaining eg. a cold chain. This is a major barrier to getting insulin out where it needs to be. In short, we need to decentralise production.

Science and engineering:
Went through one proof of concept iteration in an E. coli bacteria (for troubleshooting methods). Took about a year. We made a precursor protein to insulin. Bacteria however is not able to convert the precursor into insulin, so since early 2017 we’re looking at yeast, because that organism can do everything inside the organism. The protocol needs to be simple and easily reproduced.

6 months - 1 year we will have engineered the strain that does everything. Then we can move to using the strain and producing or scaling up. So the question is now: how do we structure the legal entities to govern the production.

Teams from Ghent (ReaGent) and Sydney (BioFoundry) joined the project. International collaboration is unfolding. We need to organise this better and set up some legal frameworks for sharing the IP that gets generated, keeping the goals of the project in mind, we want to have a commons framework. Allowing entities to use it, but making sure that they do so in keeping with commons principles.

The organisation needs to ultimately be accountable to diabetes patients. It can’t be a misalignment like we have now with the large producers that mainly have a large profit motor. They just keep diabetics dependent, charge high prices, and don’t innovate much otherwise. Prices went up by 1000%, even though production got cheaper.

Many semi-independent manufacturing efforts that are localised, but sharing knowledge.
A [diabetes] patient coop would be able to decide how much effort to put into prevention or researching cure vs manufacturing.

The FDA is the biggest player in making this a reality. Big part of this is making a rigorous case and showing the costs of illness and the benefits of our alternative. Depending on how their own incentives work, they might not care.

We have 2 goals, proposal is to split in two groups:

1. How do we move from here to this cooperative?

A cooperative as a platform where patients would be the main stakeholders.
The patent is not to stop other people from doing it, but to protect the

Characteristics of the agreement:

Rate of profit determined by patients
Where it is invested is determined by patients.

Example of medical cannabis cooperatives. Maybe we can use it as a template for our organisation. Tailor this to the local jurisdiction.

We need some kind of global scale organisation that holds the IP in custody. Perhaps a Swiss foundation. A public benefit corporation.

Forging alliances with city governments. Show that production at city scale is feasible and show that economic implications they have can be addressed. Eg. problem of people going to emergency rooms, which is a cost for the city, so open source insulin would make the hospital work better.
Lucas Gonzales. Epidemiologist. His job is to prepare for flu pandemics in the canary islands. As part of preparing the plan, he found out there’s 8000’s diabetics in the CI and there is no capacity on the island (comes from Germany). So in case of pandemic, they are screwed. This could be an angle.

Synthetic pancreas people. Firewall of FDA and then they appealed to free speech. They don’t sell, yet share the schematics.

Make it look less like a market transaction, and more like a club: participating in the testing.

Analogy to Open Source Ecology. Centralized body of knowledge, localized operation to build machines by doing workshops etc.

  • Unincorporated association:
    Agreement, but not in any legal form. 2 pager. For very early stage funding. Like a club. People have an account in the name of the club. This could be global from day 1, with members. It has a ‘hatching clause’ which makes it hatch into an actual legal form.

Action items:

  • Review relevant structures
  • Pitch this to city governments (Milan next month, Oakland, Ghent)
  • Have a legal structure, so that funders know where their money goes
  • Cali cooperative weed
  • Cooperatives in calif and europe (Switzerland? Winnie’s contact Malcolm Bain? European Cooperative Association)
  • Centralized holder of IP

Review the agreement of Chris.

Have an inside trusted partner when you pitch this, so that’s it’s not 50 50 in they liked it not. Clear action plan with timelines. Open to input. Jump in early for a premium. Weigh the pro’s and con’s of premium. Winnie can talk about it with the head of strategy for the City of Ghent.

In Oakland: never got to the head, always mid or low level managers. You need to get people in power to not necessarily endorse it, but mainly not stop it. An endorsement would really help though. A paragraph and collect signatures of ‘innovation, super cool project’.

2. How do we do international collaboration?


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