Adam Schwartz of EFF writes:
In 2023, the State of Washington enacted one of the strongest consumer data privacy laws in recent years: the “my health my data” act (HB 1155). EFF commends the civil rights, data privacy, and reproductive justice advocates who worked to pass this law.
This post suggests ways for legislators and advocates in other states to build on the Washington law and draft one with even stronger protections. This post will separately address the law’s scope (such as who is protected); its safeguards (such as consent and minimization); and its enforcement (such as a private right of action). While the law only applies to one category of personal data – our health information – its structure could be used to protect all manner of data.
Scope of Protection
Authors of every consumer data privacy law must make three decisions about scope: What kind of data is protected? Whose data is protected? And who is regulated?
The Washington law protects “consumer health data,” defined as information linkable to a consumer that identifies their “physical or mental health status.” This includes all manner of conditions and treatments, such as gender-affirming and reproductive care. While EFF’s ultimate goal is protection of all types of personal information, bills that protect at least some types can be a great start.
The Washington law protects “consumers,” defined as all natural persons who reside in the state or had their health data collected there. It is best, as here, to protect all people. If a data privacy law protects just some people, that can incentivize a regulated entity to collect even more data, in order to distinguish protected from unprotected people. Notably, Washington’s definition of “consumers” applies only in “an individual or household context,” but not “an employment context”; thus, Washingtonians will need a different health privacy law to protect them from their snooping bosses.
The Washington law defines a “regulated entity” as “any legal entity” that both: “conducts business” in the state or targets residents for products or services; and “determines the purpose and means” of processing consumer health data. This appears to include many non-profit groups, which is good, because such groups can harmfully process a lot of personal data.
The law excludes government from regulation, which is not unusual for data privacy bills focused on non-governmental actors. State and local government will likely need to be regulated by another data privacy law.
Unfortunately, the Washington law also excludes “contracted service providers when processing data on behalf of government.” A data broker or other surveillance-oriented business should not be free from regulation just because it is working for the police.
Read more at EFF.