The TCGA Pilot Project produces large volumes of genomic information derived from human tumor specimens collected from patient populations, and also grants access to significant amounts of clinical information associated with these specimens. The aggregated data generated will be unique to each individual and, despite the lack of any direct identifying information within the data, there is a risk of individual re-identification by bioinformatic methods and/or third-party databases. Because patient privacy protection is paramount to NIH and TCGA, human subjects protection and data access policies are being implemented to minimize the risk that the privacy of the donors and the confidentiality of their data will be compromised. As part of this effort, data generated from TCGA are available in two tiers.
- Open-Access Data tier - A publicly accessible tier of data that cannot be aggregated to generate a dataset unique to an individual. The open-access data tier does not require user certification for data access. [read more]
- Controlled-Access Data tier - A controlled-access tier with clinical data and individually unique information. This tier requires user certification for data access. [read more]
Key Human Subjects Protection and Data Access Resources:
