From kanzure@gmail.com Fri May 29 01:43:27 2009 Date: Thu, 28 May 2009 20:43:26 -0500 From: Bryan Bishop To: ben lipkowitz Subject: Fwd: Open Science Summit 2010 draft ---------- Forwarded message ---------- From: Joseph Jackson Date: Thu, May 28, 2009 at 8:41 PM Subject: Open Science Summit 2010 draft To: Bryan Bishop Open Science Summit July 2010 Venue: Berkeley (awaiting quote/confirmation on lecture hall) Participants/Sponsors: Wired, SEED media group, Creative Commons, FasterCures (Milken Institute off-shoot), MSF,   DIYbio   OpenWetWare, Curetogether.org   Universities Allied for Access to Essential Medicines,(UAEM)    ETC Group,   NYLS-Do Tank (Beth Noveck, Peer2Patent)  Public Library of Science,  Duke University: Center for Public Domain, Society of Amateur Scientists, Concept Web Alliance, Knowledge Ecology International, Open Source Drug Discovery Foundation India, Tropical Disease Initiative, PIPRA, SAGE, Glaxo-Smith-Kline, Xconomy Collabrx, OpenInventionNetwork Evening Day 0        Registration, reception Day 1 9:30-10  Welcome introduction 10-11:30 Keynote Session:  Retrospective on Human Genome Project, Prospective Look at Synthetic Biology/Personalized Medicine Participants:  Craig Venter (awaiting confirmation via Andrew Hessel), George Church (acceptance assumed via DIY biology channels), Sir John Sulston (expect confirmation in May during his visit to Uni British Columbia  where his daughter works/ he's being hosted by my friend Rebecca Goulding; John Wilbanks will also ask but they would prefer we have confirmed backing from sponsors ).     Francis Collins (currently no contacts with him). Theme:  The issue of gene patents epitomizes the tensions over public vs private interests and the role of modern science.  Dr. Venter is a particularly polarizing figure--to some he is a hero maverick scientist fed up with inertia and bureaucracy, who forced the public sector to perform by offering much needed competition.  On the other hand, Venter and others filed controversial EST patents on parts of the human genome and his institute now holds the patent on the minimum genome necessary to synthesize "artificial life."   George Church, also a leading figure in the human genome project, has long advocated the virtues of an "Open Source approach" (Polonator.org the first open source sequencing machine).  Now history is repeating itself, this time in the field of synthetic biology--as both Venter and Church are leaders in this new discipline.  Can an "Open Source" model, in which essential biotechnologies are accessible as an "innovation commons" provide a way forward?  See Freeman Dyson for a vision of an era of radically "democratized," decentralized biology.  Our Biotech Future http://www.nybooks.com/articles/20370 11:30-12        Q&A Lunch Break 1-3PM  Track I     Open Data/Open Access Publishing, review of progress, future trends. 1) 1-2  Open Data 2)  2-3  Future of Publishing/Slashdot for Science, reputation metrics Format:  Round table Participants (subject to change) PLOS (Bora Zivkovic), Science Commons John Wilbanks, Peter Suber, Cameron   Neylon,  Michael Neilson, Deepak Singh, Barend Mons  3:15-5:15     Track 2   Distributed, Decentralized, "Amateur" Science/ Do It Yourself Biology Part I  Advantages of the coming era of "garage biohacking", examples of citizen science, "Open Notebook Science", Open WetWare, iGEM competition 3:15-4:15 Format:  Panel Part II Safety and Security Concerns 4:15-5:15 pm Particpants:  Jean Claude Bradley,  Hugh Reinhoff (my daughters DNA), Mac Cowell, Rob Carlson, Roger Brent, Bryan Bishop, Jason Bobe, Jason Kelley, ETC group  15 min break  Track 3 5:30-6:30 Alternative Funding Mechanisms for Science, R&D I)  Prize Funds/Competitions   Jamie Love on the Medical Innovation Prize Fund (Knowledge Ecology International)  Thomas Pogge (Yale, ANU, Incentives for Global Health) 6:30--8 PM    Dinner Break 8:00--11:00pm  Poster Sessions, Beer/Wine Day 2 Alternate Funding Continued 9:30--10:30 II)  Microfinance, crowd-funding,   Presentation by the Open Source Science Project, a micro finance platform for research. http://www.theopensourcescienceproject.com/ 10:45-12 Open Source Drug Discovery Dr. Stephen Friend (Sage, former Merck VP),  Confirmation expected via John Wilbanks and/or Rebecca who hosts Dr. Friend in June at UBC.  I'm told its dependent on getting some major sponsors and other speakers committed.   Dr. Bramachari (Director India's CSRIO/Open Source Drug Discovery Foundation), Andrew Hessel (Pink Army) John Wilbanks/Marty Tenebaum--Health Commons (?) Lunch 1-3PM Track 4  Intellectual Property Management to Facilitate Collaborative Innovation I)  1-2pm  "Academic Background"  Janet Hope/ Sara Boetigger on "patent thickets" how IP can retard innovation, PIPRA model 2) 2-3pm  Case of OpenInventionNetwork for defense of Linux, how biotech can learn from IT/Semiconducter industry, etc.    Glaxo's decision to form a patent pool for IP related to neglected diseases Participants Sara Boetinger (Public Intellectual Property Resource in Agriculture) Janet Hope, Keith Bergelt (CEO Open Invention Network), Andrew Witty (CEO Glaxo on new patent pool, see http://www.guardian.co.uk/business/2009/feb/13/glaxo-smith-kline-cheap-medicine) Witty not confirmed yet.    I am going through London on the way to SENS 09 in Sept.  Will stop by Glaxo and Welcome Trust on this trip but not sure how effective that will be without some other intro. Suggestions for how to secure Witty needed. 3:15-5:15 Track 5 Universities and Patients. 3:15-4:15 1)  UAEM, perhaps AUTM if we can get a rep to attend (undecided). Improving the University Tech Transfer Process/ Socially Responsible Licensing  (Example of University of British Columbia). 2)  4:15-5:15 Patient Activism for Innovation:  Patientslikeme? Cure Together: Mobilizing patient advocates beyond sharing health data--becoming an effective lobbying force for systemic innovation issues rather than disease specific funding battles. Participants:  Alexandra Carmichael, (Cure Together, the crowdsourced open source health research platform)         Michael J Fox (expected confirmation through Brooke Ellison). 5:30-6:15    Closing Summary, Identification of critical avenues for further research, priority goals for the Open Science Movement, next steps. Address by Dr. Harold Varmus, co-chair President's Council of Advisors on Science and Technology (PCAST).  Inviting Varmus via PLOS, Brooke Ellison (served on ethics committe with him) and invitation via Beth Noveck who is now based in DC. [Track 6  Hacking the FDA Session on bringing Open Source Principles/Open Data to the funding and management of Clinical Trials/Regulatory Approval is needed but currently I don't have anyone in mind for this topic.  I know CureTogether is somewhat related to this concept  ] Draft Text Imagine a vastly accelerated research, development, and commercialization cycle using an entire Open Innovation process from start to finish.  In both commercial and academic labs, scientists would log results using Open Protocols such as Open Wetware.  In the next stage, scientists submit to Open Access journals~Wbut the process of peer review would be ongoing as "real time publication" allowed researchers to transform results into a publication along a continuum that ranged from initial reports to rough drafts to final submissions. A paper would never be "finished" as critique and response would be ongoing long after publication.  New, sophisticated reputation "feedback" algorithms (like those powering Ebay or Amazon but optimized for science), supplant the old static journal model.  This is already emerging to a limited extent with PLOS One.  Young post-docs, instead of laboring under a stultifying grant system that rewards conservatism and incrementalism, pitting researchers against each other for an artificially limited number of spots, could simultaneously compete and collaborate with others around the globe, using platforms such as that being developed by India's Open Source Drug Discovery Foundation.  In the past, science has been said to advance one funeral at a time, but we can no longer afford to wait for generational replacement.  Work done on open source projects would allow young researchers to build prestige, without regard to traditional hierarchy.  Open Innovation prizes, offering cash and other rewards for solutions to problems ranging from cancer to aging, would spur progress and provide further incentives.  New "micro-finance" platforms for research would enable patients and philanthropies to more efficiently direct funds to projects that slip through the cracks of the current system while also routing around "chokepoints" such as the NIH which can become a "single point of failure" in science funding (see Bush/stem cells). Next, research tools would be widely shared and disseminated, not hidden behind industrial secrecy or priced out of reach via an exclusive license.  Platform "enabling technologies" in some of the world's most important fields would be maintained as a "protected commons."  Stem cell lines or vectors to be used in gene therapy are prime examples of technologies where collective innovation to create an "Open Standard" would clearly benefit all interested parties, especially patients desperately awaiting cures.  The widespread penetration of these "upstream" technologies would utterly transform the landscape of the biotechnology industry, disrupting concentrations of power that have accumulated over the past few decades and allowing entire ecologies of enterprise to spring up, colonizing "niches" that multi-nationals neglect in the pursuit of only the highest margin returns.  Once standard, non-proprietary biotech packages are available, in principle, launching a biotech startup would be no difficult than starting an IT company to make web apps is today. In this revitalized context, as technologies approached commercialization stage, a huge variety of business models would be available using non-exclusive licensing and Open Source inspired agreements where appropriate, or allowing royalty free use for "neglected" diseases, crops, etc.  Whatever model a particular company pursued would depend on its particular sector of the life sciences (diagnostics, vaccines, drug discovery, plant breeding, etc)~E the point is that there are a huge range of alternative organizational models that have remained unexplored.             Finally, regulatory reform would create transparency in clinical trials, shifting the funding model to prevent conflicts of interest and ensuring the data was publicly available for all to see. Profits would not come at the expense of patients. Now look at reality.  Without massive coordinated effort we shall surely fail to achieve a Free and Open Science and Technology Paradigm.  The vision sketched here needs to come about within the next decade if humanity is to make any progress against our interrelated great challenges~WEnergy, Climate, Health, Food Security, and Poverty.  By 2020 there must be a distributed, global network of institutions participating in the governance of Science and Technology.  I hope you share our excitement for this unique instant in history when it is finally possible for mankind, a species distinguished and defined by its capacity to use tools, to unleash the unlimited problem solving powers of the tool of tools, science. Objectives:  Create an annual flagship event to build and maintain the identity of the international Open Science Movement.  Organize the various sub-communities into an effective, global, socio-technological force for rapid change in science/innovation policy.  The first Summit will be at Berkely because of the concentration of relevant groups in the area, but the event should not remain West Coast Centric~Weg, Finland would be ideal for 2011, and Brazil 2012. Following Melanie Swan~Rs suggestion, a series of barcamps on the topics will be held year-round/world-wide, but with the results preserved with the aim of presenting progress at the annual summit The Open Science Summit website will function as a portal to aggregate news and coordinate research.  Informally, I have a list of 200+ or so contacts active in fields related to ~SOpen Science.~T  Activists are spread across various sites such as FriendFeed and mailing lists like DIY biology, IP Health/IP Watch, etc.  A master registry is required, with participants tagged by area of interest and expertise~Weg, patent law, synthetic biology, citizen science, open data, patient advocacy, stem cells~E.. The Open Knowledge Foundation, with OpenWetWare and Science Commons, did launch an Open Science mailing list in Nov 2008, but it is impossible to capture what is needed on a list, and the burden of following so many postings on multiple lists is overwhelming. Thus, we will create a list of domain experts/liaisons responsible for keeping track of each area.  At first, I imagine 12-15, expanding as needed. Priority Action Task Forces: 1)  Open Source Bio-Physical Security.  The Wall Street Journal and Fox News are already picking up on DIY biology and asking if biohackers are a ~Sthreat to national security.~T http://online.wsj.com/article/SB124207326903607931.html The DIY biology community has been discussing the issues of safety and public perception internally, but without serious effort, a public relations debacle is inevitable and fast approaching. In 2000, Rob Carlson and Roger Brent wrote an open letter to DARPA calling for funding for an open source bio-defense toolkit. http://synthesis.cc/DARPA_OSB_Letter.pdf Now that the DIY/synthetic biology era is upon us, there is a brief period to revisit this proposal and present a solution before it is too late. Citizen Science and amateur biology can be an integral component of 21st century security.  The recent ~SSwine Flu~T outbreak, and subsequent media coverage/twitter hysteria, shows there is a long way to go before governments, health agencies, and the public at large, work together to harness the ~Swisdom of crowd.~T   The Foresight Institute~Rs recent proposal for Open Source Sensing devices to enable community detection of substances of interest, should be considered as part of this effort.  http://www.opensourcesensing.org/ Google.org and others are pouring considerable funding into pandemic preparedness and pathogen tracking (see Nathan Wolfe http://www.gvfi.org/index.html), yet the idea of funding technology development to enable bio-hackers and ordinary citizens does not seem to be on the agenda. Suggested working group members:   John Robb (global guerillas),Rob Carlson, Nathan Wolfe, Roger Brent, Jamais Cascio, David Kilcullen (former advisor to Patreus, architect of Surge), Eric Paulos, Christine Peterson, DIY bio group, George Church 2)     Social Software for Science:  While there has been a proliferation of ~Sweb 2.0 for science~T applications, there is no killer app nor even an outline of best practices for how to count new kinds of diverse contributions (blogging, sharing data/protocols, etc).  Building a reputation engine for science is immensely more challenging than anything that has been done before~Weg Amazon, Ebay, Slashdot, Affero.  An interdisciplinary task force consisting of thinkers with backgrounds in game theory, social psychology, economics, science, and programming, could be a tremendous resource for the many interested parties currently trying to build online science reputation and contribution tracking systems.  Perhaps the W3C could establish a sub-committee specifically for this task. Potential short list of advisor/initiators Michael  Neilson, Cameron Nyelon, Deepak Signh, Chris Dibona, PLOS, 3) President~Rs Council of Advisors on Science and Technology By hosting Dr. Varmus at the first Summit, I hope to open a dialogue on Scientific Innovation in the Networked Knowledge Economy.  An open letter to the PCAST by our Summit participants, outlining positions on critical areas~W synthetic biology, and the future of personalized medicine~W would be a strong first step. 4)  Open Source Stem Cells,  toolkit of essential technologies. In February 2008, I attended an important workshop at Berkeley to discuss a plan for a patent pool among the major leading research institutes in embryonic stem cells. http://repositories.cdlib.org/csls/fwp/48/  The response seemed encouraging, but sadly, little practical action has come from this attempt.  Because this field is so important, it is worth revisiting the plan presented in 08.  I suggest reaching out to select leaders and explaining the mechanics of an ~Sopen source~T approach to bundling upstream platform technologies necessary for the field of regenerative medicine.  Suggested contacts  Mike West, Bill Haseltine; also work via Bernie Siegal, the world~Rs leading stem cell activist. 5)  Legal Infrastructure for collaborative scientific innovation/thinktank/outreach to conceptualize new business models. In 2006, I started a non-profit to promote ~Spatent-left~T style licensing in the life sciences.  In retrospect, this was very ambitious (as was my move to Brazil without a working command of Portuguese).  So far, I essentially view my efforts as a failure. Several well-funded entities have pursued similar aims and are now more or less defunct (CAMBIA/MIHR) so I~Rm not too hard on myself. Still, it is deeply frustrating to read requests on the DIY biology mailing list and the open manufacturing list from inventors and scientists who want to share their work but HAVE NO MODEL. There is a huge disconnect between the academic work being done by intellectual property scholars, and actual implementation by entrepreneurs.  The Biobricks foundation has been working on the issues, as has the Synthetic Biology Project at the Woodrow Wilson center in DC, but there is no resource for those ~Sin the trenches.~T As the ~Sopen hardware~T movement picks up momentum, there is more need than ever for dedicated IP assistance for those seeking to pioneer alternate commercialization strategies.  In 2010, I~Rd like to re-launch my 501(c)(3) with adequate resources to provide such services, perhaps following the model of Public Interest Intellectual Property Advisors, PIPPA.org, but focused on open source innovation. Simultaneously, we must now move beyond the vague idea of ~Sopen source biology~T to specific proposals to improve outcomes in critical areas such as diagnostics and vaccine development.  The ACLU is currently suing Myriad Genetics over patents claiming the BRCA genes. Regardless of the outcome of this litigation, companies in the field of molecular diagnostics could voluntarily move to create a cross-licensing/open source inspired solution to end the perverse situation that prevails today, when a single test can cost as much as $3,000, thanks to licensing fees. Renewed interest in vaccines, see http://www.xconomy.com/seattle/2008/12/12/vaccines-force-their-way-off-pharmas-back-burner-as-price-increases-help-fuel-new-wave-of-innovation/ makes this a priority area for new collaborative approaches.  A simple but to my knowledge unimplemented tactic would be to share adjuvants (immune boosting compounds) which could benefit many companies seeking to improve the efficacy of their lead candidates. 6)     Investment/Finance/Prizes study group. Much more serious work needs to be done in this area.  In particular, to have maximum efficacy, innovation prizes ought to be tied to a requirement that recipients make the technology available under an open license.  Other mechanisms such as asset-backed loans, and ~Sinnovation bonds~T could be considered.  See http://www.ingenesist.com/general-info/the-new-economic-paradigm-part-7-monetization-of-knowledge-assets.html   for an interesting overview even though I don~Rt necessarily agree with all the assumptions.  Initial contributors:  Melanie Swan, Mike Milken, Keith Bergelt, Jamie Love 7)     Patient Advocacy and Public Relations Campaign. In the horror days of the AIDS epidemic, patient activists engaged in disruptive protest to force accelerated approval of and access to the first drug for the disease, AZT.  In 1998, essentially the entire field of gene therapy ground to a halt in after the highly publicized death of a single patient, Jesse.  The successful mobilization of HIV advocates has not been replicated in other fields.  Today, IT can enable new kinds of dramatic and effective advocacy and protest by patients and their supporters.  Some issues affect all patients~Weg the recent ~SFair Copyright in Research Works Act~T is a blatant ploy by the publishing lobby to undo the mandate that all NIH funded work become Open Access after 6 months. http://www.earlham.edu/~peters/fos/2009/02/conyers-bill-is-back.html Imagine a hyper-mobilized network of patients advocates with representatives from every conceivable disease condition.  When critical decisions came before the FDA (on issues such as compassionate use), ~Sflash mobs~T of activists could assemble to send a signal that can~Rt be ignored.  Patients and charities must also become sophisticated about tracking how their money is spent (tie in with Alt Finance work above).  Groups like the Juvenile Diabetes Research Foundation can tap a highly motivated participant base around an emotionally charged subject.  However, these and other disease-based-identity groups have little awareness of innovation issues.  These coalitions need to track the flow of the funds they raise to ensure that the research they support is made available on a ~Sshare-and share alike~T basis (eg, given the growing significance of tissue banking, one important goal might be to examine the terms that govern these repositories). On a recent visit at University of British Columbia, I learned that they had launched a new Open Health program and considered a media campaign to promote awareness of Open Source.  They decided against this, but I believe that a documentary or series of interviews to popularize innovation system issues could be effective.  Interviews with figures such as Yochai Benkler, Larry Lessig, Eric Raymond, Richard Stallman,  Tim O~RReilly, Eben Moglen, as well as figures from the emerging DIY/maker movement could raise awareness of technology policy considerations in the larger public. 8)  Hacking the FDA The idea of a central bureaucracy tasked with a gatekeeper function over what treatments patients can obtain would be laughable if the results were not so tragic.  The very name Food and Drug Agency attests to the hopelessness of relying on an obsolete 20th century institution to manage complex emerging technologies in categories such as DNA/RNAi based therapies, regenerative medicine, and advanced medical devices (including future neural prostheses and other brain/machine interfaces). A recent New York Times feature (May 17) chronicles the ordeal of Josh, a late stage ALS patient who campaigned to get access to a drug that had been abandoned after a patent dispute.  After tracking down the company and persuading them to make supplies available, convincing his personal physician to write a request, and submitting it to the FDA, he was denied because of ~Ssafety concerns.~T  Watching him slowly choke to death on his own tongue, his wife wondered, ~Swhat is safe about A.L.S?~T Of course, the FDA itself is aware of the problems and is struggling to adapt to the realities and possibilities of 21st century medicine. The Critical Path Initiative was launched in 2004, but this effort could be greatly enhanced if integrated with the other currents of the Open Science Movement. -- - Bryan http://heybryan.org/ 1 512 203 0507