Bill Would Enforce Notification Requirements for Cancer Registry

California lawmakers are considering a bill (AB 972) that would require the state to inform cancer patients that their health information is shared with the state's cancer registry, ABC 10 News reports (Santos, ACB 10 News, 4/1).

Background on Registry

The California Department of Public Health's statewide cancer database and surveillance system, called the California Cancer Registry, contains information on millions of cancer cases that have been diagnosed in California since 1988. The data include:

• Cancer type;
• Patient demographics; and
• Treatment and survival information.

According to UC-Davis Health System, which handles day-to-day operations of the registry, researchers use the data to assess geographic, ethnic and racial risk factors for cancer (California Healthline, 6/28/12).

Under state law, doctors are required to grant DPH and other authorized representatives access to cancer-related records.

Physicians and cancer treatment facilities have to inform patients before sharing their data. However, that requirement is not enforced, according to ABC 10 News.

Details of Bill

AB 972, by Assembly member Brian Jones (R-Santee), would require California to inform cancer patients of their rights and options related to the registry (ABC 10 News, 4/1).

Specifically, the bill would require DPH to inform patients that:

• DPH is authorized to share their information with researchers and about the data reporting requirement; and
• They can refuse to participate in studies or have their contact information withheld.

Under the bill, doctors and cancer facilities would not be required to implement mechanisms ensuring patients are notified that the center will report instances of cancer to DPH (AB 972, 2/26).

The Assembly Committee on Health is set to consider the bill in coming months (ABC 10 News, 4/1).