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CAMBRIDGE, U.K.ŚIn hopes of advancing the future of data sharing, more than 60 leading healthcare, research and disease advocacy organizations from across the globe have united to form the Global Alliance. This international initiative seeks to enable secure and improved approaches for sharing genomic and clinical data. All participating organizations have signed a Letter of Intent stating that they will work together for the creation of a not-for-profit, inclusive, public-private, international, non-governmental organization that will develop a common framework.
The seeds for this alliance were planted back in January, when 50 colleagues from eight different countries got together to discuss the issues within the field of genomic research and medicine and possibilities for advancing progress. The consensus was that establishing a common framework with international standards for enabling and overseeing the sharing of genomic and clinical data represented the greatest need. Such a framework will enable easier data sharing, which in turn will allow for new research based on that data while maintaining participant autonomy and privacy.
"In recent years, many groups around the world have recognized the need for improved approaches to bring together genomic and clinical data, and some have made progress addressing this," Prof. Mike Stratton, director of the Wellcome Trust Sanger Institute, said in a press release. "But in coming together and studying the challenges, we recognized that something was missing: an international body that spans diseases and institutions, committed to furthering progress in an innovative and responsible fashion."
As of June 5, 73 organizations had signed the Letter of Intent for the Global Alliance, with partners hailing from the United Kingdom, the United States, Canada, China, Spain, Finland, Germany, Austria, South Africa, France, Australia, Sweden and Japan.
The alliance's mission, as stated in a white paper titled "Creating a Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data," consists of "improving human health by maximizing the potential of integrating genome sequence and clinical information, while respecting and enabling the autonomy of patients." The paper notes that with the rapid drop in cost for genome sequencing, its popularity has risen, and "this wealth of genome sequence data should accelerate progress in biomedicineŚmaking it possible to integrate genomic and clinical information to reveal the genetic basis of cancer, inherited disease, infectious diseases and drug responses." Unfortunately, the paper continues, "we are not organized to seize this extraordinary opportunityŚnor are we on a path to do so."
This alliance will seek to solve that issue, developing data-sharing technology platforms with open standards so that data can be shared securely while allowing for broader, global comparisons of genetic and clinical data. "If successful," the paper says, "this effort will generate a powerful network effect, with increasing returns to scale: the more users, data and analytical methods become interoperable and networked, the more valuable each will become to patients, health care organizations, technology providers, and most importantly, to the goal of advancing medical knowledge and human health."
"At present, it is generally not possible to predict which changes in DNA sequence lead to clinical consequences. Only by comparing each personal genome sequence to a large repository of other such data can robust patterns and relationships can be identified," said Dr. Tom Hudson, chairman of the Executive Committee of the International Cancer Genome Consortium and president of the Ontario Institute for Cancer Research in Canada. "The stakes are high, because if we get it right we can create new opportunities to define diagnostic categories, streamline clinical trials and match patients to therapy. We want to make sure this is done in a global manner, and with the highest standards for ethics and privacy."