HB 1155: Indivisibles tell Washington Senate DO NOT WEAKEN My Health My Data — pass as strong a version as possible

Email sent to the Washington State Senate, March 30 2023. The referenced document on “ESHB 1155 WA Privacy Organizers Location Data Supplemental” is available here.

Dear members of the Washington State Senate,

The Washington legislature stands on the verge of passing My Health My Data (HB 1155), providing long-overdue protections for consumer health data not already covered by HIPAA. Indivisibles across the state care deeply about this issue — the privacy of our health data is an issue that affects all of us, and our families, in our daily lives. We urge you to:

• Resist attempts to weaken the bill, especially by removing or modifying the per se clause or narrowing the definition of consumer health data. Sen. Trudeau’s comments on the Indivisible Podcast make a powerful case for why the per se clause is so important for consumer protection — and to protect people from Idaho or other states visiting Washington for reproductive health care services.
• Close loopholes that put people seeking reproductive health care at risk.
• Pass as strong a version of the bill as you can to protect our health data — and people visiting our state for reproductive health care services.

The version of My Health My Data before you (ESHB 1155) requires opt-in consent for collecting and sharing consumer health data, and a separate signed opt-in authorization to sell consumer health. It also treats violations as a “per se” violation of the Consumer Privacy Act, providing for AG enforcement as well as a strong individual private right of action. These protections, stronger than in other existing state privacy bills, are urgently needed — all the more so in a post-Dobbs world, as states like Idaho criminalize abortion and gender-affirming care. We greatly appreciate the work bill sponsors Rep. Slatter and Sen. Dhingra, the Attorney General’s Office, the Law & Justice committee, and all its other supporters have done on HB 1155 on its path through the legislature. Please resist any attempts to weaken the bill, and in particular, attempts to strip or weaken the per se clause or narrow the definition of consumer health data.

However, the current version of HB 1155 still has some loopholes that put our health data — and out-of-state visitors seeking reproductive health care — at risk. For example:

• Visitors to clinics in Washington state can be tracked via loopholes undercutting the restrictions on sharing and selling location data and on using “geofenced” ads in the vicinity of health care facilities. Imani’s story and Gabriela’s story in the attached “ESHB 1155 WA Privacy Organizers Location Data Supplemental” illustrate how these loopholes could allow law enforcement and bounty hunters to target people traveling to Washington for health care.
• If unregulated entities buy Washingtonians’ consumer health data, the current version of the bill allows them to do whatever they want with it without getting consent — including selling to bounty hunters and law enforcement. Purchasers of Washingtonians’ consumer health data should be contractually obligated to provide the same protections as regulated entities.
• The “pay for privacy” language, which allows corporations to charge people who want to see what data has been collected and shared about them if they make more than two requests a year is a significant barrier to people who are at risk and want to take an active role protecting themselves by monitoring who has access to their data.

Please introduce Senate floor amendments to close these loopholes.

Just as importantly, please resist industry pressure to weaken the bill to allow them to continue to exploit our health data. Instead, represent us and our families (and your families as well), people seeking reproductive health care and gender-affirming services, and everybody else living in or visiting Washington and pass as strong a version of My Health My Data as possible.

Sincerely,

Indivisible Bellingham
Indivisible Eastside
Indivisible Greater Vancouver
Indivisible Plus Washington
Indivisible Skagit
Indivisible Washington’s 8th District
Lower Columbia Indivisible
North Kitsap Indivisible
Olympia Indivisible
Seattle Indivisible
Snohomish County Indivisible
Wallingford Indivisible