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| | Confidentiality, Data Security, and Cancer Research: Perspectives from the National Cancer Institute |
 | | Under the auspices of the NCI and led by experts in the clinical cooperative groups, which have decades of experience in handling clinical data, the cancer clinical trials community and representatives of advocacy groups should assess the adequacy of the confidentiality protections that are in place or planned for the cooperative trials program. |
 | | These include measures to insure confidentiality of research participants, adequacy of informed consent, and the extent to which participants should be notified about the outcome of research results that may have implications for their health or that of their family members. |
 | | Data from such registries satisfying established criteria for quality can be used to identify cancer trends, patterns, clusters, results of implementing health practices on a large scale, the effectiveness of public health programs, and planning. |
| www3.cancer.gov /confidentiality.html (5935 words) |
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