Organizing the open science behind open insulin

Open Insulin so far

A group of citizen scientists at Counter Culture Labs, a hacker space in Oakland, California has been developing an open-source protocol to make insulin for about a year and a half. The world needs more economical sources of insulin because 1 in 2 people who need it lack access to insulin worldwide, and this burden falls disproportionately on the poorest communities. Longer term, we hope that by starting with insulin we can broaden our scope to develop more general protein engineering capabilities and provide a practical foundation for small-scale groups working in distributed fashion to experiment with and produce other biologics.

We’re very near to reaching our first milestone of producing and isolating proinsulin, after which we’ll be redoubling our efforts to develop a simple, end-to-end protocol to produce insulin. We’ve had several collaborators join our effort in the meantime, including a group at ReaGent in Belgium, another at Biofoundry in Sydney, and another here with us in the Bay Area at Fair Access Medicines.

What have we learned about having citizens define and help advance our research project?

Our team has benefitted from participation from people with a broad diversity of backgrounds and interests - from veterans of producing biologics at pharmaceutical companies, to people with PhDs and years of work experience in relevant fields, to college students and total beginners who are just interested in starting to learn and contribute. The sharing of knowledge and responsibilities within our group thus mirrored what we were seeking to support beyond the group.

How do we ensure long term sustainability for our project?

We originally raised a little over $15k to get started via a crowdfunding campaign, a small budget that has nonetheless proven adequate. We’ve been fortunate that we’ve been able to stretch our financial resources a long way with donated and deeply discounted second-hand equipment and reagents, and the contributions of skilled volunteers to keep our equipment running. Thus we have no recurring expenses, which has proven to be the most important way to conserver resources and keep the project sustainable in its high-risk seed phase. This has put us on a firm foundation to reach our first milestone, the production and isolation of proinsulin, the first major step on the way to making the mature, active form of insulin. Once that is done, we plan to pursue our next steps and undertake whatever further fundraising effort we may need to do so, possibly involving a distributed ownership structure and holding and sharing of the fruits of our efforts under some sort of peer production license to ensure we develop a viable commons around our work.

Challenges we still face are keeping continuity in the work of the group and preservation and transmission of knowlege as members join and leave the project, something that is becoming more urgent with our developing international collaborations. The urgent questions of distributing the work effectively and making good use of everyone’s time and enthusiasm and providing all involved with the support they need has us eager to develop better organization and get people with better organizational skills involved; let us know if you can contribute in these ways!

How do we encourage change at policy level?

We have learned more about how much we don’t know about the complex geopolitics and economics around insulin than about how to directly address the policy dimensions of access to insulin and access to medicine in general. But the fact remains that our fundamental rationale for our work is economical, and has to do with the impact that decentralized production could have immediately and how it could change the landscape of incentives in the longer term to favor better policies.

We hope our work will have several effects. First, by enabling more production of insulin by more groups, it can increase competition in the market for insulin, which is currently dominated by 3 large manufacturers who face criticisms of acting as an oligopoly and lawsuits credibly accusing them of illegally colluding to fix prices. Increased competition might quickly lower costs, bringing insulin into reach for more people, and decentralized production might avoid problems with supply chains reaching parts of the world where it’s currently uneconomical to ship centrally-produced insulin. Second, in the longer term, reducing profits from sales of insulin could help to shift economic incentives towards developing better treatments, and ultimately a cure, for diabetes rather than the highly costly and inconvenient chronic treatment that those with diabetes must currently live with. This should synergize with the third effect, mentioned before, of making it easier to experiment with biologics by putting the tools for protein production and purification in more hands.

Then, with these realigned economic incentives around insulin and a cure for diabetes, we can revisit policy questions from a more favorable position, advocating for policies that favor innovation from small-scale groups and revoke the legal privileges large manufacturers have won to protect their oligopolies.

How do we organize open science?

Hi @dfko ! Thanks for posting your session proposal draft. Your remarks about information sharing and organization connect with me, not only because being part of the international Open Insulin collab. Also because when talking to people in several open and participatory science projects over the last year, the same questions keep popping up.

Perhaps this is a good challenge to solve with the participants during your session: how do we best organize collaboration and information sharing in large community driven science projects?

An outcome of this workshop could be a framework you can readily use in the project, and that others can use for their projects.

The other part of the session can be you sharing experiences, outcomes or anything you think is worth telling.

What do you think?

+1 session on Collaboration, blueprints etc

@dfko your project inspires many people around here, myself included. I spoke about it any chance I got at meetings and events…

You mention the challenge of keeping continuity within the group: how large is the group now? does it help to have community coordinators like Winnie with clear mandate to support knowledge sharing and convening of groups, even more so than the hard science aspect of the project?

Also, isnt there stuff to be learned from similar networked groups around the world ? Nightscout have also prompted high levels of interest spanning many countries, have they found new ways, better ways…? I think the lessons from a workshop like that stand to benefit any networked organisation or collective, including edgeryders if you ask me. Collaboration, especially over the internet and between people who barely see each other face to face, well… it’s damn hard. Keep it up!

During my visit in Oakland, Anthony and I discussed the organisational side of Open Insulin. With methods for collaborating globally being one aspect, another is what to do with the open insulin protocol once it is there.

In order to keep incentives aligned and the decision making power with the patients, we came up with the idea of a patient cooperative to govern a sort of generic insulin manufacturing company. Everyone has a non-transferrable share and is involved in the decision making process of what happens with the gains from the cooperative’s activities.

Do patients want cheaper insulin? That would be possible.
Do patients want to invest into research for better forms of insulin? That would be possible.
Do patients want a combination, where the financially comfortable patients invest their gains in better insulin, while the poorer choose for cheaper insulin? That would (or should be) possible, although it will require more complex forms of governance.
Do patients want to invest in an actual cure, instead of remaining dependant on insulin as a treatment? That would be possible.

Ultimately, resources would stay inside the circle of people who stand to benefit the most from the productive activities, without external predators to capitalize on their ilness.

There are many questions, limitations and remarks around design and implementation of such a cooperative. We hope to explore those during the workshop part of the Open Insulin session at OpenVillage Festival. It will be a collaborative brainstorm format, focussed on concrete solutions, rather than a philosophical exploration of the idea.

I hope we can already start off the discussion here in anticipation of the event. That will make our meeting in two weeks much deeper. Ping @dfko @chrisjcook @damiano , you might find this interesting. Do you have any pointers from your own work?

Hi Winnie.

Open Insulin is of great interest in the context of my action-based (ie applied, rather than theoretical) research into resilience.

Open Insulin represents what I think of as a global (‘macro’) application of the resilient institutions (aka agreements) and instruments I have been researching and developing. Open Care & Open Villages are (by definition local) resilient ‘micro’ applications.

Of course we network resilient micro, the result should be resilient mezzo and macro. :slight_smile:

Looking forward to the discussion.

Best regards

Chris Cook

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I’m curious to explore the micro/macro dynamics. The current idea with Open Insulin is to bring production to a city level.

There are synergies in scale, and costs. In my view, it is a good strategy to start small and observe where it stops making sense to grow certain aspects. Eg. physical production might stop being interesting to scale beyond the city level, but it might make sense to keep growing a shared pool of financial resources so that it spans a country. And perhaps distribution hubs at a neighborhood scale.

First and foremost things must make sense at a micro level, and can then be minimally tweaked to also make sense as part of a bigger whole. Yet the priority is always the micro, or else the macro is fragile.

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Some notes in preparation of this session.
Anthony will present an introduction to Open Insulin. He will focus on the organisational side of the project and the obstacles this entails. This has two aspects that are immediate needs for Open Insulin:

  • A way of organising ourselves that scales internationally. May includes better habits, expressing shared values and use of digital platforms
  • A prototype of a patient cooperative that stewards the open insulin protocol. May include managing a commons that is a production facility at a certain scale (eg. the city level) and collective decision making. How to prototype such a complex thing in an accessible and action oriented way?

Desired outcomes for the project:

  • Several sets of methods/tools/habits that (citizen science) projects can use to organize themselves internationally and locally. No information without context, but a combination of what to use, how to use them and when.
  • A plan for prototyping a patient cooperative that stewards the open insulin protocol

We will discuss a set of questions, aimed at coming up with actionable outputs. Depending on the amount of people showing up, it may be beneficial to split into groups briefly, before sharing insights collectively again.

  • How have you managed communication in your team?
    What are tools you use, how do you use them?
    How does it scale online, geographically, over time zones?
  • How have you managed information in your team?
    What are tools you use, how do you use them?
    How does it scale online, geographically, over time zones?
    Is it applicable for scientific data?
  • @chrisjcook, from your experience in applied research, what would be thoughtful questions as prompts for discussing the patient cooperative?

Input and remarks are very welcome. Ping @cindys , you probably have valuable experience with similar challenges.

My ‘reality-based’ approach in my action-based (‘learning by doing’) research is to first establish the desired outcome and to then ‘Backcast’ to firstly, identify the resources necessary to achieve that outcome and secondly, the optimal institutions and instruments to mobilise these resources, as far as possible in ‘money’s worth’ rather than money.

Note here by ‘institutions’ I do not mean organisations which have a legal existence independent of their membership, but rather nested/networked agreements between stakeholders (the aim is for a Platform Co-op consisting of a co-op of co-ops, association of associations or even club of clubs) to the agreed common purpose These multi-stakeholder co-ops may or may not be within national corporate frameworks: the global framework agreements requires careful thought. @cindys

As with any concept we will need an initial proof of concept implementation & location.

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I would very much like to join this session and learn more about the foundations of this visionary project, the current team’s structure/framework, and the needs it plans to address. Some of the questions you’ve raised have a parallel focus as the session on Infrastructure for autonomy. (Which session comes first you think?) It would be ideal to if we can pull the learning and conclusions from one to the other.

Great! :slight_smile: The panel will be on Day 1 and this workshop is on Day 2. I will be at the panel as an active audience member and documenting thoroughly with the Open Insulin project in mind.

That’s clear, thanks. Backcast seems like a good exercise for this topic, and a structured way at that. I have facilitated such a brainstorm before and could do it at the workshop. Unless someone else rises to the opportunity, of course.