How to Build on Washington’s “My Health, My Data” Act

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.

Consent or Minimization to Collect or Share Health Data

The most important part of Washington’s law requires either consent or minimization for a regulated entity to collect or share a consumer’s health data.

The law has a strong definition of “consent.” It must be “a clear affirmative act that signifies a consumer’s freely given, specific, informed, opt-in, voluntary, and unambiguous agreement.” Consent cannot be obtained with “broad terms of use” or “deceptive design.”

Absent consent, a regulated entity cannot collect or share a consumer’s health data except as necessary to provide a good or service that the consumer requested. Such rules are often called “data minimization.” Their virtue is that a consumer does not need to do anything to enjoy their statutory privacy rights; the burden is on the regulated entity to process less data.

As to data “sale,” the Washington law requires enhanced consent (which the law calls “valid authorization”). Sale is the most dangerous form of sharing, because it incentivizes businesses to collect the most possible data in hopes of later selling it. For this reason, some laws flatly ban sale of sensitive data, like the Illinois biometric information privacy act (BIPA).

For context, there are four ways for a bill or law to configure consent and/or minimization. Some require just consent, like BIPA’s provisions on data collection. Others require just minimization, like the federal “my body my data” bill. Still others require both, like the Massachusetts location data privacy bill. And some require either one or the other. In various times and places, EFF has supported all four configurations. “Either/or” is weakest, because it allows regulated entities to choose whether to minimize or to seek consent – a choice they will make based on their profit and not our privacy.

Two Protections of Location Data Privacy

Data brokers harvest our location information and sell it to anyone who will pay, including advertisers, police, and other adversaries. Legislators are stepping forward to address this threat.

The Washington law does so in two ways. First, the “consumer health data” protected by the consent-or-minimization rule is defined to include “precise location information that could reasonably indicate a consumer’s attempt to acquire or receive health services or supplies.” In turn, “precise location” is defined as within 1,750’ of a person.

Second, the Washington law bans a “geofence” around an “in-person health care service,” if “used” for one of three forbidden purposes (to track consumers, to collect their data, or to send them messages or ads). A “geofence” is defined as technology that uses GPS or the like “to establish a virtual boundary” of 2,000’ around the perimeter of a physical location.

This is a good start. It is also much better than weaker rules that only apply to the immediate vicinity of sensitive locations. Such rules allow adversaries to use location data to track us as we move towards sensitive locations, observe us enter the small no-data bubble around those locations, and infer what we may have done there. On the other hand, Washington’s rules apply to sizeable areas. Also, its consent-or-minimization rule applies to all locations that could indicate pursuit of health care (not just health facilities). And its geofence rule forbids use of location data to track people.

Still, the better approach, as in several recent bills, is to simply protect all location data. Protecting just one kind of sensitive location, like houses of worship, will leave out others, like courthouses. More fundamentally, all locations are sensitive, given the risk that others will use our location data to determine where – and with whom – we live, work, and socialize.

More Data Privacy Protections

Other safeguards in the Washington law deserve attention from legislators in other states:

• Regulated entities must publish a privacy policy that discloses, for example, the categories of data collected and shared, and the purposes of collection. Regulated entities must not collect, use, or share additional categories of data, or process them for additional purposes, without consent.
• Regulated entities must provide consumers the rights to access and delete their data.
• Regulated entities must restrict data access to just those employees who need it, and maintain industry-standard data security

Enforcement

A law is only as strong as its teeth. The best way to ensure enforcement is to empower people to sue regulated entities that violate their privacy; this is often called a “private right of action.”

The Washington law provides that its violation is “an unfair or deceptive act” under the state’s separate consumer protection act. That law, in turn, bans unfair or deceptive acts in the conduct of trade or commerce. Upon a violation of the ban, that law provides a civil action to “any person who is injured in [their] business or property,” with the remedies of injunction, actual damages, treble damages up to $25,000, and legal fees and costs. It remains to be seen how Washington’s courts will apply this old civil action to the new “my health my data” act.

Washington legislators are demonstrating that privacy is important to public policy, but a more explicit claim would be cleaner: invasion of the fundamental human right to data privacy. Sadly, there is a nationwide debate about whether injury to data privacy, by itself, should be enough to go to court, without also proving a more tangible injury like identity theft. The best legislative models ensure full access to the courts in two ways. First, they provide: “A violation of this law regarding an individual’s data constitutes an injury to that individual, and any individual alleging a violation of this law may bring a civil action.” Second, they provide a baseline amount of damages (often called “liquidated” or “statutory” damages), because it is often difficult to prove actual damages arising from a data privacy injury.

Finally, data privacy laws must protect people from “pay for privacy” schemes, where a business charges a higher price or delivers an inferior product if a consumer exercises their statutory data privacy rights. Such schemes will lead to a society of privacy “haves” and “have nots.”

The Washington law has two helpful provisions. First, a regulated entity “may not unlawfully discriminate against a consumer for exercising any rights included in this chapter.” Second, there can be no data sale without a “statement” from the regulated entity to the consumer that “the provision of goods or services may not be conditioned on the consumer signing the valid authorization.”

Some privacy bills contain more-specific language, for example along these lines: “a regulated entity cannot take an adverse action against a consumer (such as refusal to provide a good or service, charging a higher price, or providing a lower quality) because the consumer exercised their data privacy rights, unless the data at issue is essential to the good or service they requested and then only to the extent the data is essential.”

What About Congress?

We still desperately need comprehensive federal consumer data privacy law built on “privacy first” principles. In the meantime, states are taking the lead. The very worst thing Congress could do now is preempt states from protecting their residents’ data privacy. Advocates and legislators from across the country, seeking to take up this mantle, would benefit from looking at – and building on – Washington’s “my health my data” law.