The USC Norris Comprehensive Cancer Center is committed to ensuring the confidentiality of the data that we collect, as a part of a broader effort to minimize and manage research risks to participants; therefore, all sharing of data will be in compliance with the USC IRB regulations and the Health Insurance Portability and Accountability Act (HIPAA). We believe that the most feasible approach towards data sharing is to adopt the “data enclave” principles described in the NIH workbook on data sharing (see http://grants.nih.gov/grants/policy/data_sharing). Requests for data will be subject to review regarding the purposes that the data are to be put; specifically, is there scientific merit in a specific request? The Leadership Council will act as a committee for the purpose of reviewing requests for data from outside investigators and organizations. In the spirit of protecting the primary investigators’ “first and continuing” access to data they have generated, this committee reserves the right to reject a meritorious request if the analyses have already been considered (and documented in writing) for future action by one of the primary investigators or co-investigators. The data sharing committee will respond to all written requests for data. Costs associated with the development of data sets (such as programmer time or additional laboratory analyses) in response to a request that has been reviewed positively are to be borne by the outside investigators. Typically, only de-identified or anonymized or summary data (not raw records) or statistical analyses required for the development of appropriate scientific publications and presentations will be released to the outside investigators.
Proposals for data sharing must be made in writing and submitted to the Cancer Center administrative offices, which will distribute the request to all members of the Leadership Council. These proposals must include a description of the scientific questions underlying the request and outline potential scientific publications. A response to all requests will be forthcoming within 60 days of receipt.
Postal mail can be sent to: Associate Director for Administration, USC Norris Comprehensive Cancer Center, 1441 Eastlake Ave, Room 8302, Los Angeles, CA 90089-9181