Jones' measure requiring the California Cancer Registry to keep patients informed is approved by key committee

SACRAMENTO – Senate Bill 452, written by Sen. Brian Jones, R-Santee, passed the Senate Health Committee recently. This bill requires the California Department of Public Health to send an informational brochure explaining the California Cancer Registry to each individual added to the registry.

The California Cancer Registry is operated by the department of public health. Regulations by the department 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 registry 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.

“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 said.

Jones is himself a cancer survivor and learned about the registry through a constituent who came forward with a story about being contacted by a researcher before she had even decided to tell her family about her cancer diagnosis.

SB 452 passed out of the Senate Health Committee 9-0 and will next be heard in the Senate Appropriations Committee.

Sen. Brian W. Jones is chair of the Senate Republican Caucus and was elected to the California State Senate in 2018 representing the 38th Senate District which includes Alpine, Escondido, Lemon Grove, El Cajon, La Mesa, Santee, Poway, San Marcos, Lakeside, Valley Center, Rancho Santa Fe, Julian, Ramona, Rancho San Diego, Bonsall, Fallbrook, Borrego Springs and parts of the city of San Diego.