LETTER OF INTENT TO ESTABLISH THE GLOBAL ALLIANCE
[ _____ __, 2014]
This nonbinding Letter of Intent serves to confirm the intent of [Insert Name of Organization] to be a founding partner organization in the establishment of a global alliance in the field of human genomics.
Background
In January 2013, a group of international leaders met to discuss the current challenges and opportunities in genomic research and medicine, which were memorialized in the White Paper “Creating a Global Alliance to Enable the Responsible Sharing of Genomic and Clinical Data.” Inspired by the examples of the World Wide Web Consortium and the Human Genome Project, the meeting participants asked the organizing committee to develop the framework for the establishment of a global alliance.
The overarching goal of the global alliance is to accelerate progress in medicine by encouraging widespread access to genomic and clinical data by developing a common framework of international technical, operational and ethical standards needed to ensure the interoperability of genomic research platforms in a secure and responsible manner. In order to achieve these goals, the global alliance will work to (i) bring together the research, clinical, and disease advocacy communities and the private sector to support and promote the responsible sharing of genomic data and (ii) collaborate with interested parties to create an information platform that is open and accessible, and provides common standards, formats and tools to stakeholders in the genomic research community.
Founding Principles
To achieve the goals of the global alliance, it is currently anticipated that the global alliance would operate consistent with the foundational principles set out below. The parties anticipate that these principles will be further revised and/or developed and reflected in more detail in a future Memorandum of Understanding, consistent with the founding partner organizations’ own mission, goals and policies.
The global alliance will be an independent alliance of healthcare providers, research institutions, disease advocacy organizations, life science and information technology companies - dedicated to improving human health by maximizing the potential of integrating genome sequence and clinical information to accelerate progress in biomedicine.
The global alliance will be established by founding partner organizations, each of which brings world-leading experience in domains relevant to the mission along with an outstanding record of serving the public good.
The global alliance will be an unincorporated not-for-profit association. To provide long-term stability and support, the global alliance will initially be administered and hosted by agreement with one or more of the founding partner organizations.
The global alliance will establish an executive committee initially composed of individuals from the Founding Partner Organizations with expertise in medicine, research, information technology, and ethics and will provide oversight and direction of the global alliance as it seeks to maximize benefit, and will organize subgroups as needed to address issues as they arise. Ultimately the executive committee will be accountable to the membership of the alliance.
The global alliance will be open and inclusive to organizational and individual members including “Biomedical members” with expertise in health care, academic research, disease advocacy, genomic sequencing and information, and pharmaceutical research and development; and “Information members” with expertise in data storage, establishing shared internet standards, high performance computing, search and social media.
Subject to availability of resources and consistent with their own policies, it is anticipated that the founding partner organizations will work together to ensure that the global alliance:
- Serves the public good
- Supports the needs of a broad community of patients, researchers, and clinicians
- Functions to the highest ethical standard
- Is well-governed, and is resourced and funded for the first 2 years of operations
- Achieves its goals in the first 2 years and is positioned for ongoing success
Subject to availability of resources and consistent with their own policies, it is anticipated that the founding partner organizations will contribute substantially to the capabilities and capacity of the global alliance in one or more of the following ways:
- Contribute data and/or expertise, driving the evolution of the information platform
- Develop analytical tools and applications needed by researchers and clinicians and as appropriate make those tools available to the global alliance community
- Shape the informed consent and regulatory environment to enable the responsible sharing of data within the community
By signing this Letter of Intent, the below-referenced organization acknowledges its intent to participate as a founding partner organization in the global alliance and to work collaboratively with the other founding partner organizations to develop the global alliance. This Letter of Intent is not intended to and does not create any legally binding financial or other obligation, including any obligation to negotiate a Memorandum of Understanding, on the part of the signatory organization or between the signatory organization and the global alliance or any of the founding partner organizations and does not establish a joint venture, partnership, association or other entity.
Name ______________________________
Title______________________________
Organization _________________________
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