Sharing is caring

CAMBRIDGE, U.K.—In hopes of advancing the future of datasharing, more than 60 leading healthcare, research and disease advocacyorganizations from across the globe have united to form the Global Alliance. Thisinternational initiative seeks to enable secure and improved approaches forsharing genomic and clinical data. All participating organizations have signeda Letter of Intent stating that they will work together for the creation of anot-for-profit, inclusive, public-private, international, non-governmentalorganization 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 theissues within the field of genomic research and medicine and possibilities foradvancing progress. The consensus was that establishing a common framework withinternational standards for enabling and overseeing the sharing of genomic andclinical data represented the greatest need. Such a framework will enableeasier data sharing, which in turn will allow for new research based on thatdata while maintaining participant autonomy and privacy.

"In recent years, many groups around the world haverecognized the need for improved approaches to bring together genomic andclinical data, and some have made progress addressing this," Prof. MikeStratton, director of the Wellcome Trust Sanger Institute, said in a pressrelease. "But in coming together and studying the challenges, we recognizedthat something was missing: an international body that spans diseases andinstitutions, committed to furthering progress in an innovative and responsiblefashion."

As of June 5, 73 organizations had signed the Letter ofIntent for the Global Alliance, with partners hailing from the United Kingdom,the United States, Canada, China, Spain, Finland, Germany, Austria, SouthAfrica, 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 andClinical Data," consists of "improving human health by maximizing the potentialof integrating genome sequence and clinical information, while respecting andenabling the autonomy of patients." The paper notes that with the rapid drop incost for genome sequencing, its popularity has risen, and "this wealth ofgenome sequence data should accelerate progress in biomedicine—making itpossible to integrate genomic and clinical information to reveal the geneticbasis of cancer, inherited disease, infectious diseases and drug responses."Unfortunately, the paper continues, "we are not organized to seize thisextraordinary opportunity—nor are we on a path to do so."

This alliance will seek to solve that issue, developingdata-sharing technology platforms with open standards so that data can beshared securely while allowing for broader, global comparisons of genetic andclinical data. "If successful," the paper says, "this effort will generate apowerful network effect, with increasing returns to scale: the more users, dataand analytical methods become interoperable and networked, the more valuableeach will become to patients, health care organizations, technology providers,and most importantly, to the goal of advancing medical knowledge and humanhealth."

"At present, it is generally not possible to predict whichchanges in DNA sequence lead to clinical consequences. Only by comparing eachpersonal genome sequence to a large repository of other such data can robustpatterns and relationships can be identified," said Dr. Tom Hudson, chairman ofthe Executive Committee of the International Cancer Genome Consortium andpresident of the Ontario Institute for Cancer Research in Canada. "The stakesare high, because if we get it right we can create new opportunities to definediagnostic categories, streamline clinical trials and match patients totherapy. We want to make sure this is done in a global manner, and with thehighest standards for ethics and privacy."