Monday, June 6, 2016 News

Supporting the Vice-President’s Cancer Moonshot Initiative

Open Access   ·   Open Data

Earlier today, Vice President Biden announced the launch of the Genomic Data Commons (GDC), a new fully open database to be housed at the National Cancer Institute (NCI) that will help to achieve the Cancer Moonshot’s aim of speeding up progress towards cancer treatments and cures.

The GDC database will target a very specific layer of data – the raw genomic and clinical trial data from cancer patients. It will initially contain data from existing NCI programs (including data from about 12,000 patients), and is expected to grow rapidly as researchers contribute to it. The GDC will hold data on the molecular makeup of individual cancers, information on treatments used, and information on how patients responded to specific treatments. Researchers will be able to freely access this data, and more importantly, re-analyze it according to their needs.

The GDC has been in the planning stages at the NCI for the past couple of years, and has its roots in the Precision Medicine movement that both the National Institutes of Health (NIH) and the White House have been championing. The Precision Medicine movement calls for enabling access to individual patients genomic data to allow it to be mined. It’s worth noting that the GDC will operate as an international public/private partnership. It will be built and managed by the University of Chicago Center for Data Intensive Science in collaboration with the Ontario Institute for Cancer Research, and run under an operating contract with the NCI.

In remarks slated for later today at the American Society of Clinical Oncology, the Vice President is also expected to address the need for facilitating a comprehensive strategy towards data sharing. In recent weeks he has been outspoken on the need for faster, open sharing of research outputs, and the need to break out of the current model of having data siloed in too many individual, largely inaccessible locations.

The Genomic Data Commons will take an important step towards creating a central, open location where researchers can easily find – and use – cancer data. But this is just a first step. More steps can be taken – and taken quickly – to further advance progress towards the Cancer Moonshot’s goal of making ten years of progress in cancer treatments and cures in half that time.

Last week, SPARC submitted a letter detailing recommendations for three things that the Vice President can do immediately to accelerate progress in the Moonshot:

  1. Require that all articles reporting on National Cancer Institute (NCI) funded research be made immediately available upon publication – with no embargo.
  1. Require that the data supporting these articles also be made immediately available upon publication – also without embargo.
  1. Require federal agencies to incentivize the open sharing of research articles and data by rewarding that behavior in their funding and promotion process.

This is an important opportunity to highlight the value of full, immediate open access as an effective strategy to achieve the goals of the Moonshot. If these actions are adopted for cancer research, they would set an important precedent for actions that can – and should – be adopted in other disease-specific research areas, and potentially on a much wider basis, across research disciplines.

Its not often that we are presented with the chance to clearly articulate how the principles of open access can be turned into actions that can have an immediate and positive impact on the public’s good. The Vice President’s Cancer Moonshot offers a unique opportunity to do exactly that and to contribute to an innovative and ambitious initiative that effectively re-envisions the research process for the 21st century.

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