Privacy to Again be a Major Issue in California in 2020

By Brett Johnson
Nov. 20, 2019

The enactment of the California Consumer Privacy Act of 2018 (AB 375) (CCPA) brought sweeping restrictions on the collection and use of consumer information. A clean-up bill that same year, SB 1121 (Dodd), added key exceptions to the CCPA to help protect clinical trials and other biomedical research from unintended consequences, including exceptions for, among other things, protected health information (PHI) under federal law and information collected as part of a clinical trial subject to various laws and guidelines.

Concerns, however, have remained among many in the life sciences industry that key areas of vulnerability may remain for industry. First, the extent to which the deidentification standards commonly used in biomedical research satisfy the deidentification standard of the CCPA remains unclear and could lead to substantial issues if there is not clarity on alignment. Second, the current exceptions covering business associates under federal law do not account for many of the business associate relationships in the life sciences industry. Third, some categories of biomedical research information do not appear to be exempted currently, such as real-world data (RWD) and real-world evidence (RWE), as well as product registration and tracking information collected for federally required compliance purposes.

In this legislative year, the clock unfortunately ran out on attempts made by CLSA and our partner trades to obtain some of the aforementioned amendments, despite the fact that they had garnered acceptance from key privacy advocates. Though the push for such amendments will continue, another potential ballot initiative on the issue may complicate matters.

After circulating several versions of an initiative, entitled the California Privacy Rights and Enforcement Act of 2020 (CPREA) and colloquially known as the “Privacy 2.0 Initiative”, Alastair Mactaggart filed the reportedly final version of the initiative with the Attorney General earlier this month. CLSA has coordinated with our partner stakeholders to provide input on the initiative language and anticipates a great deal of debate and discussion on the initiative as we approach November 2020. Mactaggart has repeatedly stated that he does not intend to withdraw this initiative based on legislative action, as he did with last year’s initiative that gave rise to the CCPA, though some stakeholders have their doubts. He has shared polling of California voters indicating CPREA enjoys 88% favorability to emphasize his intent to go to the ballot.

CLSA and our partner stakeholders are hopeful that the impending initiative, as well as the likely swarm of legislative activity related to the initiative and the broader issues it raises, will not derail efforts to obtain needed amendments to the original CCPA language, which could lead to a chilling of research conducted in California and raise the likelihood of costly litigation. Any CLSA members who would like to provide input or would like further information on the issue are asked to reach out to Brett Johnson, CLSA’s Senior Director, Policy & Regulatory Affairs (