San Francisco, 19-20 April 2013

"The Truth of Personalized Medicine: Our Commons Future"

Workgroup D – Enabling Sharing

(3 Sept 2011) Updates on the post-Congress Workgroup/Community of Interest activities are available in the Sage Bionetworks web site.

John Wilbanks, Bob Cook-Deegan & Jonathan Izant

Goals and Principles of Human Data Sharing:

Regulatory, social and technical infrastructures through which human data and disease models flow have both failed to keep pace with the technological advances and have largely ignored evidence-based risk and reward mechanisms. We have the opportunity to create a new infrastructure for disease biology, based on the ongoing explosion of clinical and genetic information and a technical platform that engages the entire community in an unprecedented fashion. This includes activating the public as substantial participants in the research process that is the focus of Workgroup A. In so doing, we can lay a new social foundation for an open and contributor-driven approach to genomic sciences and improved, personalized medicine.

Workgroup D’s task is to explore the rules under which data needs to move and be shared, and to create tools that enable an open Commons that can achieve the full potential of model-driven biology.

Workshop Agenda

Part 1. Bob Cook-Deegan will lead a review of ‘Sage Commons Principles’ as a charter for all the activities associated with the Commons. It will include assimilation of the suggestions, questions and comments from attendee’s pre-Congress review of the draft Principles. The goal is to get feedback and buy-in from the Workgroup and to work through the issues and strategy such that the document is ready for presentation to, and acceptance by, the entire Congress on Saturday morning. In addition to looking at the lessons and precedents in other fields of science and projects such as the Personal Genome Projects and DTC genomics marketplace, discussions may include the dilemma of HIPPA, IRBs, and the challenge of process harmonization.

You can access and comment on the Draft Sage Commons Principles by clicking here.

Outcome: The resultant Commons Principles will be an explicit “Charge” to Sage Bionetworks, as steward of the Sage Commons, covering questions such as: what are the rules under which data can be contributed to Sage Bionetworks and shared by Sage Bionetworks? What are the rules under which those who access Sage Bionetworks’ data? What norms do we expect to govern us, and those who find us via the network? The workgroup will also establish the plan to communicate and engage the wider community in the Commons Principles following the full Congress presentation on Saturday morning.

Part 2. The Commons Principles ultimately require a matrix of tools and stakeholders to implement the solutions. In the second part of the workshop, John Wilbanks will lead a scoping exercise to frame the problems and build the list of actionable tools required to implement the Commons Principles including the strategy for an ‘Engaged Public’ that is the focus of Workgroup A. These will include research consent opt-in statements, anonymization algorithms, repository/computational platform terms of use.

Outcome: The Workgroup will establish a clear schedule of priority tools and engage the participants in specific tasks for the next year. The outcome will be an implementation plan and timeline that includes the steps required for each goal, stakeholders and experts required for success and specific tasks for each member of the workgroup team.

Pre-Congress Background Materials:


Useful Links:

One Response to “Workgroup D – Enabling Sharing”

  1. Tom Freeman
    April 14th, 2011 @ 10:07 am

    I am excited to participate in the discussion. Industry reaearch differs from academic research in so many ways that are important for our purposed. There is a broad gap in understanding between the two groups that goes both ways. Understanding and addressing these differences are going to be very important in engaging industry to share data. I look forward to the perspectives of others in industry from other companies.

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