Expanding the Informed Consent Ontology to support Specimen and Data Sharing


  • Frank J. Manion
  • Jihad Obeid

Workshop type:

  • Workshop

Workshop Abstract

Currently, several ontologies are being developed to help provide a framework for representation of permissions, rights, and obligations on data and other materials such as biospecimens involved in biomedical research. The Informed Consent Ontology attempts to provide a foundation to represent the components of the informed consent process for research subjects, including specific choices for research participation made by the study subjects. Other groups are currently building ontologies or model systems to specifically represent data use permissions and constraints; the US Common Rule and the requirements contained therein; and the metadata involved with information discovery and indexing of available regulated datasets. This workshop is intended to be a forum for the discussion of ways to collaborate between these initiatives. Participants will be invited to submit use cases as well as specific sets of rights, permissions, and obligations on data and physical material (i.e., specimens) before the workshop. Objectives for the workshop will include the coordination of collaborative efforts between these groups, and a harmonized list of use cases and associated permission/obligation sets to be used in further development of the ontologies involved.


This workshop is intended to be a working, hands-on session between groups interested in the problems of how to represent and model rights, obligation, permissions, "powers" and the like. The workshop seeks to build on discussions and collaborations established between groups working on the BFO-based Data Use Ontology (DUO), the Informed Consent Ontology (ICO), the Common Rule Ontology (CRO), as well as the BioCADDIE initiative. Members of most of these groups met in a recent, two-day workshop held in at the University of Arkansas for Medical Sciences in Little Rock, Arkansas. The proposed workshop seeks to extend our initial discussions, and advance that work.