OICR spearheads new global alliance for sharing massive genetic data sets

Leadership from the Ontario Institute for Cancer Research (OICR) and $500,000 in seed funding from the Ontario government has led to the formation of the Global Alliance to Enable the Responsible Sharing of Genomic and Clinical Data. Modelled on the ground breaking World Wide Web Consortium of the 1980s, the alliance aims to accelerate the treatment of both common and rare diseases by bringing coherence and technical standards to the massive amounts of genetic data being generated globally.

The alliance was created following the release of a white paper co-authored by Dr Tom Hudson, OICR's president and scientific director. In a few short months, it has already attracted 75 partner organizations from a dozen countries, some of which have ,or plan to, provide seed funding.

"There are petabytes of data spread around the world and we want to establish principles and a common platform like IP addresses," says Hudson. "I was brought in as an alliance builder and we modelled it on the world wide web and the ICGC (International Cancer Genome Consortium). Big data have become a problem or an opportunity, depending on how you look at it. Personalized medicine compounds this."

The alliance's administrative headquarters are located at OICR in Toronto and its interim executive director is Peter Goodhand, executive lead of OICR's international partnerships division and former CEO of the Canadian Cancer Society. Goodhand edited and integrated the white paper and will split his time between Toronto and Boston.

According to the white paper, the alliance is tasked with " enabling rapid progress in biomedicine; working together to create and to maintain the interoperability of technical standards for managing and sharing sequence data in clinical samples; developing guidelines and harmonizing procedures for privacy and ethics; and, engaging stakeholders across sectors to encourage responsible and voluntary sharing of data and of methods".

With the rapid progress being made in personalized medicine, ethics will comprise a key component of the alliance's activities. But its primary objective is to accelerate research by breaking down the barriers that keep valuable data isolated by disease type, institution and country. Greater data sharing and coherence under common protocols will create opportunities to define diagnostic categories, streamline clinical trials and match patients to therapy.

"Seventy-five of the largest organizations have signed on to this," says Hudson. ". The National Institutes of Health, The Wellcome Trust, India and China have all joined."

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