Chapter 6. Advocacy for neglect: The repackaging of NTDs
6.2 Activist scientists: Careers in an unmodern or modern science
6.2.5 Australia: Alternative innovation frameworks
Todd is a scientist working in the Chemistry department at the University of Sydney and is concerned with how open source innovation can assist in drug development. As Christine Årdal and John-Arne Røttingen document (2012), there has been a great deal of theoretical discussion and a number of initial projects based on this idea. Open source for drug discovery is a concept that “borrows two principal aspects from open source computing (i.e., collaboration and open access) and applies them to pharmaceutical innovation” (Årdal & Røttingen, 2012).
Todd originally became interested in the NTD schistosomiasis as a post-doctoral researcher, drawn to molecules that are difficult to make and which hold practical applications. The appeal of the open source philosophy came later: “it mimics the software development term… the aim is clear that the way to gain benefit is to share everything” (Interview with author, Todd, 2013).
For Todd it is a way to share research in a complete state so that others can then take it and make changes that they see fit. Based on this rationale, he began a project known as 'The Synaptic Leap' in 2006.
The Synaptic Leap originally consisted of a group of online research communities for malaria, schistosomiasis, toxoplasma and TB. A lab notebook was made visible in the public domain mimicking open source in software development. The project on schistosomiasis was completed in 2011, resulting in improvements to the production of the most common drug used to treat the disease Praziquantel, and this work was published in peer-reviewed journals. While
this project did yield some results, it is still unsual for entrepreneurial practices, particularly those adopting 'open source' approaches in academia.
Other scientists have also taken on a larger entrepreneurial role to establish their own NGOs.
Richard Jefferson founded Cambia in 1992. It is now ranked as one of the world’s top NGOs (The Global Journal, 2013) and has been receptive to adopting open approaches to innovation.
Cambia was the brainchild of Jefferson. A molecular biologist by training, he was critical of multinationals such as Monsanto for controlling critical technologies through patents and access to capital. For him the blockbuster mentality and rent-seeking model in biotechnology has not been working and inhibits innovation: “In that model, you invent a new process, find a drug target, or discover a new gene, then wrap it up in intellectual property protection and try to sell it to the highest bidder. That bidder then has to try to assemble the puzzle into something actually useful. It’s a slow, expensive, and cumbersome process” (Interview with author, Jefferson, 2013). As an alternative to this model he has sought to create accessible tools and technologies that enable equitable innovation.
Openness for Jefferson is to create the infrastructure to make innovation equitable and transparent by allowing people to see and align self-interests between disparate groups. In tackling NTDs his NGO Cambia provides 'The Lens' as a tool to search for patents. He explained that there is not a direct initiative for NTDs because the focus is on “making it possible for people to be active in problems and their own solution-set” (Interview with author, Jefferson, 2013). Therefore, he wants to keep the possibilities of using the tool open. Cambia has given a stage to science matters where ownership is of crucial importance, such as plant gene and genome intellectual properties (Jefferson, Köllhofer, Ehrich, & Jefferson, 2015). However, it appears harder to see relevance in open innovation approaches applied to NTDs.
On balance, my argument is that the need for openness to tackle NTDs, while being one strategy to direct research and funding efforts, is not a good match for how the policy problem is understood. This thesis has intended to look beyond the obvious and intuitive idea that neglect of NTDs is mainly on a pharmaceutical basis, due to lack of R&D, and move towards a more encompassing view of neglect. In addition, the emphasis on pharmaceutical responsibility does tend to get confused with treating NTDs as 'for-profit' diseases (e.g. HIV/AIDS which has patients in both the developed and developing world) where there is an issue with access from developing world because of intellectual property rights protecting for-profit research efforts.
NTDs are generally not-for-profit diseases and so while open approaches have been novel, and may encourage collaborative working (mainly because it is in their remit), there are not any particular openness barriers that need dismantling. Thus open approaches to innovation do not appear to be addressing a multi-faceted understanding of neglect in the case of NTDs.
Mary Moran outlines this line of argumentation in her critique of WHO pilot projects, which began in 2014 to fund research for NTDs. Her claims are laid out in the provocatively titled Nature article: 'WHO plans for neglected diseases are wrong' (Moran, 2014). When I interviewed her she summed up her paper: "Well, basically I'd say, look, I understand that there's problems with accessing commercial and intellectual property, but we don't have that problem in neglected diseases and the solutions you're proposing for neglected diseases don't fit here" (Interview with author, Moran, 2014). Indeed pharma companies when launching open innovation projects give more of the impression of PR exercises, as opposed to the tried-and-tested drug donation model that has been working for some time with NTDs.