# Presentation: 181775

## The cancer Biomedical Informatics Grid (caBIG):  Enabling the patient-centric molecular medicine revolution

- Patricia Weeks
- Fox Chase Cancer Center

## The NCI 2015 challenge goal: To “eliminate suffering and death due to cancer”

- “When I look into the eyes of a patient losing the battle with cancer, I say to myself, It doesn’t have to be this way.”Dr. A.C. von Eschenbach, M.D.Director, National Cancer Institute
*The Nation’s Investment in Cancer Research* (2003)

## Overarching caBIGTM Principles

- caBIGTM participants will:
- Develop a virtual web using principles of:
- open source
- open development
- open access
- federation
- Maintain academic freedom, disseminate research results and promote the use of technologies developed with NIH funding

## Data Safety and Intellectual Capital Workspace (DSIC WS)

- Suggest standards and draft policy documents related to data sharing and intellectual capital
- Write white papers to clarify caBIGTM’s stand on regulatory and intellectual property issues
- Act as the “in house experts” on issues related to regulatory and proprietary matters raised by other workspaces
- Define “boundaries” to assist developers in developing technical specifications

## DSIC WS Sponsors Two Special Interest Groups (SIGs)

- The Regulatory SIG is focused on legal and policy issues relating to study participant consent, IRB and HIPAA authorization, and confidentiality and data security.
- The Proprietary SIG is concerned with intellectual property matters such as software licensing, data sharing and biospecimen resources and “intellectual capital” (e.g., authorship and attribution).

## DSIC WS Methodology: The “Problem Scenario” Approach

- Problem scenarios are solicited from members of the DSIC and throughout the caBIG community
- After problem scenarios are submitted, they are addressed by a member of the appropriate team (either the Proprietary or Regulatory SIG).

## Our Major Work Products to Date

- Publication policy for caBIGTM Publications
- Proposed guidelines for open source software (OSS) licensing
- Model OSS license agreement
- Draft set of principles and sample language for data sharing agreements that reflect best practices and support effective sharing of data in the research community
- Information sessions for IRBs at participating cancer centers

## More Work Products

- FAQs related to regulatory and proprietary issues as well as DSIC WS’s major work products
- Draft de-identification white paper
- Problem scenarios and solutions to guide grid development
- Policies on conflicts of interest and industry participation
- Research on data sharing and regulatory practices by many other major initiatives

## How to find us...

- _[https://cabig.nci.nih.gov/working_groups/DSIC_SLWG/index_html](https://cabig.nci.nih.gov/working_groups/DSIC_SLWG/index_html)_
**Working Group Coordinator**
- _Marsha Young_, Booz Allen Hamilton
- 240-314-5995
- young_marsha@bah.com
**NCI Facilitator**
- _[Wendy Patterson](mailto:pattersw@mail.nih.gov)_: pattersw@mail.nih.gov
**Regulatory SIG Lead**
- _[Elaine Brock](mailto:ebrock@umich.edu)_: ebrock@umich.edu
**Proprietary SIG Lead**
- _[Pat Weeks](mailto:Patricia.weeks@fccc.edu)_: Patricia.Weeks@fccc.edu