Working Group Products/Community-Based Agreements

  • Bermuda principles (1996, 1997)Agreement among researchers involved in sequencing the human genome made at a meeting in Bermuda in 1996.  The group enunciated principles of rapid data release and public access to the primary genomic sequence.  These principles were reaffirmed and necessary steps for scientists and funders to ensure adherence to the principles were identified at a second meeting in 1997.
  • Sharing Data from Large-scale Biological Research Projects (Fort Lauderdale Agreement, 2003)  Wellcome Trust sponsored this meeting to discuss pre-publication data release in the field of genomics. Attendees were in broad agreement that a tripartite system (sequence users, sequence producers, funders) of responsibility to encourage the continuation of the benefits of sharing was necessary.
  • Hinxton Group. Consensus Statement on Transnational Cooperation in Stem Cell Research. (2006) “Insofar as hESC lines are a precious resource and replication and scientific collaboration are vital to scientific advancement, we encourage scientists conducting stem cell research to submit any stem cell lines they derive to national or international depositories that subscribe to internationally accepted standards of quality and make cell lines and data (e.g. DNA fingerprinting and microsatellite data) publicly available.”
  • AUTM. In the public interest: Nine points to consider in licensing university technology (2007)
    Based on shared perspectives emerging from a 2006 meeting of research officers, licensing directors, and a representative of the AAMC.  This document reflects recommendations to assess licensing opportunities individually, and in a manner that reflects the ‘business needs and values of the institution, but at the same time, to the extent appropriate, also to bear in mind the concepts articulated herein when crafting agreements with industry.’
  • Hunt P. Human Rights Guidelines for Pharmaceutical Companies in relation to Access to Medicines. (2008) The report contains two main sections: as accountability is one of the central features of human rights, section I discusses the importance of effective, transparent, accessible and independent accountability mechanisms in relation to the right to the highest attainable standard of health. Section II and the annex to the present report, containing the Human Rights Guidelines for Pharmaceutical Companies in relation to Access to Medicines, which set out the human rights responsibilities of pharmaceutical companies in that context. The Guidelines consider issues such as transparency, management, accountability, patents, licensing and pricing.
  • Bamako data sharing code of conduct (2008)  The WHO and several funders led by the Wellcome Trust supported the development of this code of conduct to encourage greater sharing of public health data.
  • The International Expert Group on Biotechnology, Innovation and Intellectual Property. Toward a New Era of Intellectual Property: From Confrontation to Negotiation. (Sept 2008) The members of the International Expert Group provide an overview of their research findings, and more importantly, practical recommendations that respond to the critical need to develop policy tools and approaches to manage the transition from Old IP to New IP. The success of this transitions—measured in terms of increased social, health, agricultural, and economic benefit derived biotechnology—will depend on the political will of the governments and the long-term vision of companies, partnerships and knowledge sharing. If countries and private actors retain their narrow and unsuccessful models, biotechnology will more likely be a bane than a benefit at all. By aligning IP policy with democratic values of equity and fairness governments, researchers, universities, industries, and NGOs can embrace the future.
  • The Toronto Statement (2009) Attendees at the Toronto International Data Release Workshop recommend extending the rapid release of prepublication data (that has served the field of genomics well) to other biological data sets.
  • Who Owns Science? The Manchester Manifesto. (2009) The University of Manchester Institute for Science Ethics and Innovation (iSEI) was officially launched in July 2008. A meeting held in conjunction with the Brooks World Poverty Institute took place alongside the launch. This interdisciplinary expert meeting considered the topic ‘Who Owns Science?’ through discussion around the questions such as: What is science for? What should science be for? What are the effects of the current model of innovation and commercialization of science? With the particular aim of starting to formulate a ‘Manchester Manifesto’ – a consensus statement “on the issues, the problems and dangers, the opportunities and hopefully also some of the solutions which will enable science and innovation to flourish in ways compatible with human progress… and global justice.” This was followed by a second meeting in January 2009 and subsequent drafting and circulation of the Manifesto text, which was finalized and published in November 2009, with fifty signatories from the ‘Manifesto Group’.
  • STEPS Centre. Innovation, Sustainability, Development: A New Manifesto. (2010) The authors argue that a radical shift is necessary in the way we approach innovation in order to solve many of the world’s existing and incipient challenges. At the heart of such a shift in global innovation agenda is a greater respect for cultural variety, regional diversity, and democratic accountability. This would also require the opening up of new political spaces, drawing in social movements, smaller businesses and excluded voices. It also means radically changing the ways in which innovation is shaped through agenda setting, funding, capacity building, organizational arrangements, and monitoring, evaluation and accountability. The authors consider these issues and make recommendations for improvement.
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