Workstream D: Internationalization

Leader: Carolina Rossini, Berkman Center at Harvard University
Participants: Rebecca Goulding, Robert Cook-Degan, Carol Dahl, John Wilbanks

Introduction:  An inherent challenge for the creation of a Sage Commons is the diversity of international laws and norms around intellectual property, data and databases, privacy, confidentiality, and policy. This exact challenge is the focus of the Internationalization Worksgroup.

Sage Bionetworks’ goal of moving data into a “Commons” and stimulating the growth of a contributor network requires widespread access to fundamentally non-commercial assets. Initially the issues are straightforward because the data is currated by the Sage Bionetworks non-profit organization. But the assembly of databases from global contributors will require the integration of data sources from multiple national contexts with differing privacy regimes, scientific norms of collaboration and interoperability.

Sage seeks to achieve a “comedy of the Commons” wherein individual economic actors are encouraged to act rationally to maximize their own interests while technical and legal regimes balance those interests into a system that enhances the benefit for all actors.  In order to shape the assembly, use, and access to data related to disease modeling there is a need to understand the international legal/policy/social/cultures frameworks and the attendant variation in IP rules, norms for informed consent, privacy and definitions.

The basic question is a simple, “What would happen if we tried to assemble a globally coherent data set from UK, India, and China and we wanted to run it in Brazil?”  We would need to identify rules in countries that don’t allow export of information, and different norms for informed consent and issues surrounding their definitions. (Beijing Data Initiative)

The mission of the Internationalization Workgroup is to provide an understating of international challenges and perspectives, which will guide the Sage Commons global expansion.  Our goal is not to provide all the answers, but rather to initiate a conversation among international experts and to begin mapping the complexity of a global, peer-production system for integrative genomics data.

Activities Before the Congress:

  • Improve group definition
  • Define group focus
  • Define workgroup timeline
  • Define list of names and invite people/institutions = organize WG network
  • Perform interviews among those part of the workgroup network.
  • Define set of questions
  • Send questions to a first list of peer-reviewers
  • Prepare list of experts who will participate in the country-surveys.
  • Define set of countries for “case studies”

Activities at Congress

  • Presentation on the above
  • Host a workshop to discuss strategy and questions/survey
  • Present questions/list of country/methodology/timeline
  • Approve way forward