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Sacramento – Senate Bill 452, authored by Senator Brian Jones (R-Santee), passed the Senate Health Committee yesterday. This bill requires the California Department of Public Health (CDPH) to send an informational brochure explaining the California Cancer Registry to each individual added to the registry.
The California Cancer Registry (CCR) is operated by the CDPH. Regulations by the CDPH currently require the diagnosing physician to notify the patients of the cancer registry; however, cancer patients often report that they do not have knowledge of the registry.
Once a researcher is approved to contact an individual cancer patient to participate in a research project, a letter along with an informational brochure about the CCR is sent to the patient. Until then, patients are often unaware that their personal information (including personally identifiable information such as name, birthdate, social security number, and address) and medical information have been shared.
Jones commented, “Cancer patients should not have to find out about the registry’s existence when they get contacted by a researcher; they should know about it when their information is first entered into the registry.”
Jones, himself a cancer survivor, learned about the registry through a constituent that came forward with a story about being contacted by a researcher before she had even decided to tell her family about her diagnosis of cancer.
SB 452 passed out of the Senate Health Committee 9-0 and will next be heard in the Senate Appropriations Committee.