Indivisibles ask the Washington House to strengthen and pass My Health My Data (HB 1155) — and commit to further strengthen it

Email sent to the Washington House of Representatives, February 19 2023

Re: Indivisibles ask you to strengthen and pass My Health My Data (HB 1155) — and commit to further strengthen it

Dear members of the Washington State House of Representatives,

The privacy of our health data is an issue that affects all of us, and our families, in our daily lives. The Supreme Court’s decision overturning Roe v Wade increases the urgency of passing strong legislation to protect access to reproductive health care and gender-affirming services.

My Health My Data Act (HB 1155) responds to this urgent need. Even though the Civil RIghts & Judiciary’s substitute (HB 1155-S) is significantly weaker than the original version of the bill introduced by Rep. Slatter, Sen. Dhingra, and Attorney General Ferguson, it still has opt-in consent for collection, use, sharing, and sale of consumer health data and a strong private right of action. That combination can provide valuable protection from privacy abuses that are happening today that put people seeking and providing reproductive, sexual, and gender-affirming health care at risk.

However, substitute HB 1155-S also weakens some other very important protections in the original version of My Health My Data and as a result leaves Washingtoninans and visitors to our state at risk — including people seeking and providing reproductive, sexual, and gender-affirming health care. For example:

• The substitute version of My Health My Data no longer prohibits sales of Washingtonians’ health data. Apps, websites, “crisis pregnancy centers”, and anybody else can now sell our health data if they get an “authorization”, a much lower level of protection. Once they get an authorization, they can sell data to unregulated entities in other states — who can then do whatever they want with the information, including selling it to data brokers to resell, or to law enforcement and bounty hunters in states that have criminalized abortion and gender-affirming health care.
• The definition of consumer health care information has been narrowed, so some of the data that could put Washingtonians at risk can now be collected, used, shared, and even sold without requiring consent.
• The prohibition on “geofencing” — using location data to target ads at or track people visiting sites that provide health services — has been relaxed, potentially opening the door up to anti-abortion groups continuing to target ads at women visiting clinics.
• It makes us pay for privacy: if we want to find out what information data brokers or advertising companies have on us more than twice a year, they can charge us for it!

It’s easy to see why industry lobbyists asked for these changes at the hearing. All of these changes, and others, help them make money by exploiting our data. But what’s more important, industry profits, or protecting Washingtonians and people visiting our state?

Healthcare providers and patients supported the original version of My Health My Data at its hearing. So did reproductive rights, gender justice, and civil liberties organizations — and Indivisibles. We liked that version better than the substitute.

So we ask you to please

• Strengthen and pass My Health My Data, including by undoing changes in the substitute that weakened protections and adding protection for “de-identified” data
• Resist attempts to weaken My Health My Data any further
• Commit to working with your colleagues in the legislature continue to strengthen it as it moves through the Senate and into cross-chamber negotiations

Industry knows how important it is for My Health My Data to pass. They’re trying to take advantage of the situation by pressuring you to pass a bill that favors their interests rather than ours. Please resist the pressure to accept a bill that lets them continue to exploit and endanger us, but leaves the people the bill is supposed to protect at risk.

Instead, represent us and our families (and your families as well), people seeking reproductive health care and gender-affirming services and everybody else in Washingtonian. Strengthen, pass, and commit to to further strengthen the bill so that the legislature passes as strong a version of My Health My Data as possible.

Sincerely,
Groups from the Washington Indivisible Network, including:
(alphabetically)

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