The sum of the whole

International partners describe global alliance to enable secure sharing of genomic and clinical data

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With the costs of human genome sequencing having fallen amillion-fold since the technology first became available—and withever-increasing numbers of people electing to make their genetic and clinicaldata available for research, clinical and personal use—more than 70 leadinghealthcare, research and disease advocacy organizations spanning across 40countries have banded together to form an international non-profit alliancededicated to enabling secure sharing of genomic and clinical data.
As the parties involved have noted in officialannouncements, interpreting these genomic data sets "requires an evidence basefor biomedicine that is larger than any one party alone can develop, and thatadheres to the highest standards of ethics and privacy," and so they say theyhave come together recognizing "that the public interest will be best served ifwe work together to develop and promulgate standards (both technical andregulatory) that make it possible to share and interpret this wealth ofinformation in a manner that is both effective and responsible."
The consortium is still only in its early stages oforganizing and refining its structure and goals, and is known, as yet, onlygenerically and colloquially as the Global Alliance. But even without a catchyname or all the i's dotted and t's crossed, the parties feel that now, severalmonths after 50 colleagues from eight countries met in New York City, the timehad come to make their presence more widely known to continue momentum and drawmore organizations into their fold. That effort has including the publishing ofa white paper, which can be found on the website of the Broad Institute of MITand Harvard, one of the nine organizations represented by eight people on theOrganizing Committee of the Global Alliance at the New York meeting held inlate January.
During the meeting, the several dozen colleagues discussedthe current challenges and opportunities in genomic research and medicine andhow the groups involved in the alliance could work together to foster medicalprogress.
"Just a few years ago, only a handful of human genomes hadbeen sequenced; today there are many tens of thousands of sequenced genomes,and it is widely expected that in the coming years millions of people willchoose to have their genome sequenced for research, clinical, or personal use,"notes David Altshuler, one of the Organizing Committee members, as well as afounding core member of the Broad Institute and director of the Broad's Programin Medical and Population Genetics since 2003. "The ability to collect andanalyze large amounts of genomic and clinical data presents a tremendousopportunity to learn about underlying causes of cancer, inherited andinfectious diseases, and individual responses to drugs. Moreover, for patientswith cancer and rare inherited diseases, genome sequencing is already becominga powerful tool for diagnosis and decisions about therapy."
"We are producing so much data from sequencing now that theaverage user of data cannot download it," adds Tom Hudson, another OrganizingCommittee member and the president and scientific director of the OntarioInstitute for Cancer Research. "One of the things we see as we sequence moreand more tumors in clinical trials to find out which patients will respond bestto which therapies, for example, is that from patient to patient you seeimmense heterogeneity in tumor genomes. Every patient's tumor is verydifferent, so it's really through collaboration and sharing of drug responseand other data that we can pick up the signal for what really works best forcancer and other diseases."
But more than simply figuring out how to manage and sharedata, he notes, a prime concern coming out of the January meeting was that thegreatest need right now was for a common framework of international standardsthat ensures that genomic and clinical data are shared in an effective andresponsible manner as well as an interpretable one.
To those ends, the alliance is intended to include leadinghealthcare providers, research institutions, disease advocacy groups, lifescience and information technology companies and others to ensure the broadestand most effective set of perspectives and skills.
"This is an excellent initiative and we are very proud to bea part of it," said Janet Thornton, director of the EMBL-EuropeanBioinformatics Institute in the United Kingdom, as part of a news releaseannouncing the participation of the European Molecular Biology Laboratory(EMBL) and its five sites in various European locations in the alliance. "Aspart of the Global Alliance and members of ELIXIR [which shares similar aimswith the alliance], we can help make this vision a reality. Sharing data andinformation is at the heart of our mission, and developing resources that enableinnovation is a large part of what we do. The European Genome-phenome Archive,the Embassy Cloud, and BioMedBridges are just a few projects at EMBL-EBI thatcan support the alliance's technical standards for interoperability as well asfor data access and security."
In announcing the Global Alliance to members of the HumanVariome Project Consortium and the consortium's involvement with the alliance,Prof. Richard Cotton, the Human Variome Project's scientific director, said,"The envisioned work of the Global Alliance is entirely complementary to theHuman Variome Project's work in ensuring the free and open sharing of geneticvariant information is integrated into routine clinical practice in everycountry of the world. As a founding partner of the Global Alliance, we now havethe opportunity to ensure that our work on the clinical side of medicalgenetics and genomics is of use and available to the research world."
Currently, valuable genetic and clinical data are isolated,notes Hudson, whether by research organization, country or disease area, thuslimiting their impact.
"The idea behind the alliance is to break down barriers sothat as much data as possible can be shared and used in studies. This will alsoallow researchers to tackle larger, more complex research problems," he says.
In addition to the Broad and the Ontario Institute forCancer Research, other organizations represented in the alliance's OrganizingCommittee are the A-T Children's Project, Brigham and Women's Hospital, theHoward Hughes Medical Institute, Massachusetts General Hospital, MemorialSloan-Kettering, the Wellcome Trust Sanger Institute and the University ofCalifornia, Santa Cruz. To find out whom else is involved and more detailsabout the alliance's goals and driving philosophies, see the white paper

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