Thread by @NexusOfPrivacy

Staring at 10:30 am: the House Civil Rights & Judiciary hearing, incliuding #MyHealthMyData and the #ShieldLaw.

Live video stream: tvw.org/video/house-ci…

"A much more favorable environment", my #waleg privacy overview, has more about both these bills

privacy.thenexus.today/wa-privacy-mor…

#MyHealthMyData (HB 1155), from @SlatterVandana and @Dhingrama, provides strong protections to consumer health data. It

- requires opt-in consent before companies collect, use, or share data
- prohibits sales of health data
- restricts geofencing around health facilities

There's a good overview of #MyHealthMyData from @JessicaHrdcstle in @TheRegister
theregister.com/2023/01/18/was…

And @shawnamizelle covered #MyHealthMyData for @CNN
cnn.com/2023/01/18/pol…

The #ShieldLaw (HB 1469 / SB 5485), sponsored by @SenatorTrudeau @RepDrewHansen protects abortion providers, patients, and helpers in Washington by putting up barriers to out-of-state investigations from states that criminalize abortion or gender-affirming care

I'll be live-tweeting, starting at 10:30. Stay tuned!

Here's the video link again: tvw.org/video/house-ci…

There are over two dozen people signed up to testify on #MyHealthMyData (HB 1155).

PRO: @Legal_Voice @ProChoiceWA @GenderJusticeWA @wapeopleprivacy @waisn_org @LWVWA @ACLU_WA @jaclseattle @AGOWA @cherthedev @jdp23 (me!) and more

OTHER on #MyHealthMyData: @WTIA @Technet @futureofprivacy @WAHospitals @waretail and the State Privacy & Security Coalition

More about SP&SC's strategy of watering down state privacy laws from @ToddFeathers and @alfredwkng in @themarkup
themarkup.org/privacy/2022/0…

And we're off! Starting with a staff briefing on HB 1155, #MyHealthMyData. I've been consistently impressed with legislative staff's work on privacy bills over the years. Here's the bill analysis. lawfilesext.leg.wa.gov/biennium/2023-…

#MyHealthMyData has a broad definition of consumer health data -- that's good! It even includes health data that's derived from non-health data.

Health data can only be collected or shared with prior consent by the consumer -- "opt in"! That's good too!

The bill also has rules about notice, security requirements, and restrictions on server providers.

Consumers have rights to confirm whether an entity is collecting or sharing health data, withdraw consent, and delete data.

Two important prohibitions:

- it's unlawful to sell health data

- it's unlawful to put a geofence around certain health care entities

Rep. @SlatterVandana, the bill's sponsor, notes that HIPAA protetions don't apply when you share health information on a web site, app, or searchers.

#MyHealthMyData addresses that. It's taken on increased urgency with the overturning of Roe v. Wade. #AbortionJustice

The bill protects all health data, but the SCOTUS decision highlighted gaps for reproductive health data and gender-affirming care.

Slatter notes some of harms. Period tracking apps. "Crisis pregnancy centers." Advertising.

Thanks people, including @AGOWA and his team, working together to mitigate as many as unintentional impacts as possible. Need to align with other states -- but not willing to compromise on protecting health data. "Data we expect to be private, but currently isn't".

Ranking Member Walsh notes that he was surprised by media focus on reproductive rights aspects, when it's a general health privacy bill. Why is that?

Slatter: health data protection's long overdue, taken on increased urgency because over half our population is concerned about how the data can be used to impact their rights. It's not incendiary, just the right thing to do!

Starting in-person testimony. Limiting testimony to 90 seconds.

Up first Nicole Kern of Planned Parenthood Alliance Advocates, PRO. Talks about patients concerned about. privacy -- and afraid to seek care.

Talks about SafeGraph selling location data of people who visited @PPFA abortion clinics. We want to stop that.

vice.com/en/article/m7v…

Up next, @danniaskini of @GenderJusticeWA, PRO. Significant concerns about states attacking gender-affirming care. Maintains privacy and safety of people seeking gender-affirming care and their families.

Stan Shikuma of @jaclseattle, also a member of @ResistenciaNW, PRO. Talks about how government surveillance was used during WWII to oppress Japanese-Americans. "Today we face a threat to our right to obtain healthcare without fear of surveillance."

Shikuma: "Access to health care, data privacy, and freedom of fear should be a right."

Ashley Sutton of @TechNet_NW, concerned about what they see as overly-broad definitions.

Ha! Exactly as I predicted in

privacy.thenexus.today/wa-privacy-mor…

Bob Battles of AWB makes a similar point about narrowing definition of data. Also wants an R&D exemption. Concerned about private right of action under CPA, asks that people have to prove all five elements (no per se clause), remove right to cure.

Kelly Fukai of @WTIA says there's been great progress on language, but need more to let consumers have more control. Asks for "precise" location in geofencing, narrow the definition of consumer health data. Hey wait a second I'm noticing a pattern here.

Andrew Kingman of SP&SC says it needs to be watered down to better protect consumers. As drafted, the definition of consumer health data is so broad that they'll get opt-in requests for books about health. [Which it should!]

SP&SC has definitional problems. Sale includes the term share, which is used differently. Collect includes any form of processing. Also, doesn't like the private right of action.

Question from Rep. Walen: does it apply to Apple Care and other state health agencies? No.

Ranking Member Walsh to industry lobbyists: is bill fixable? They say yes.

Up next, Andrea Alegrett from the AGO ... then me, so I'm going to take a break and prep my testimony!

Whew, I think it went okay.

Dr. Anuj Khattar of Cedar River Clinics, provides an abortion provider's perspective, and support the bill.

@waisn_org highlights immigrant perspectives -- undocumented immigrants are concerned their data will be shared with ICE.

Mark Johnson of @waretail talks about how they worked closely with former Sen. Carlyle on the Bad Washington Privacy Act -- which the legislature repeatedly rejected. Wants to work with sponsors to weaken #MyHealthMyData

Ryan Spiller of an automotive trade association notes that vehicles have sensors, including some that rely on facial detection (which is different than facial recognition). The bill requires consent for these features, which they think is a mistake.

@WAHospitals, like everybody else testifying OTHER, supports the goals but has concerns about the specific language. Concerns about overlap with other bills, lack of clarity on exemption data, has alternate language. Objects to having exemption language tied to CPA.

Alicia Hupprich of LD23. Talks about her decision to end a pregnancy. Husband in military, so no insurance options, had to go out of state. Looked online, anti-abortion groups used her data to harass her. #MyHealthMyData would protect people from harassment.

@jennifer_e_lee of @ACLU_WA strongly supports. Serious harms are heightened in post-Roe world. Data can be used to target and harass people seeking abortion and gender-affirming are. Protects data not covered by HIPAA: app data, geolocation data.

Lee talks about FTC settlement with a period tracking app - ftc.gov/news-events/ne…

Yvette Maganya of @Legal_Voice focused on "crisis pregnancy clinics" (CPCs), fake clinics -- they're not medical clinics, so not covered by HIPAA. They provide misinformation and surveil pregnant people.

legalvoice.org/post/designed-…

@Slaterfe of @futureofprivacy is OTHER. Addresses important concerns. Two recommendations:

- tailoring definiton of health data to apply to uses. "could swamp consumers with opt-in notices".

- tailoring geofencing to allow traffic analysis

Darbi Gottlieb (I missed the affiliation) also expresses concern about overlap with existing protections and the R&D exceptions.

Brian Warren makes similar points. Biomedical research covered by federal common rule doesn't allow for data to be deleted. For blinded research, subjects can't be made aware of their information. Has suggested language, submitted in writing.

Brad Payne of Family Policy Institute of Washington respects privacy rights, asks that it apply equally to all medical facilities -- including Planned Parenthood as well as CPCs. Shouldn't be used by AG to primarily protect abortion facilities, which has been the rhetoric.

And that's it for public testimony on that bill. As is traditional in Washington, industry lobbyists askingn to weaken the bill got to speak; individuals testifying PRO didn't.

Still, great points by the bill's supporters -- and some concerns worth looking at

Now on to the #ShieldLaw, HB 1469. @RepHansen talks about the need for this bill to protect Washingtonians.

@LavenderRightsP talks about the importance of protecting bodily autonomy in general.

@RepHansen @LavenderRightsP Professor David Cohen talks about overall trends to criminialization, notes that several other states have passed similar legislation

@RepHansen @LavenderRightsP Ranking Member Walsh asks about the full faith and credit clause. How to square the circle?

Cohen: Full faith and credit only requires recognizing out-of-state *judgments*, nothing in the #ShieldLaw counters that.

WA Assoc Sheriffs & Police Chiefs opposes bill. WA law enforcement shouldn't get caught up in intra-state issues. Cites language in Extradition Clause in the constitution.

What if Louisiana (LA) defines abortion as homicide? Then an WA officer executiing a LA warrant isn't sure whether or not it falls under the #ShieldLaw.

More provider perspectives. "There is no reproductive health care without reproductive health care providers."
Urges passing the bill.

A former abortion patient also speaks on the necessity of protecting providers as well as patient. Threats include attacks as well as criminalization. "I see abortion access as harm reduction in cases of domestic violence as well."

Washington State Coalition Against Domestic Violence also supports the bill. Notes that they have multiple locations close to the Idaho border. "Access to health care, including reproductive choices, will help victims of DV"

Alizeh Bhojani of @Legal_Voice notes that SCOTUS decision requires Washington to be at the forefront. Idaho's Supreme Court upheld their law criminalizing abortion that allows bounty hunters. People are facing untenable decisions today, please pass this law.

Dr. Sarah Prager from @acog supports the bill. "Currently, I could be prosecuted for doing my job."

Dr. Suzanne Poppema, "So many of our patients have literally nowhere else to turn."

@danniaskini of @GenderJusticeWA: "As states pursue bigoted attacks against trans people, especially younger people, we hear from so many people who come to Washington to receive care." Urges to vote to support it.

@LWVWA strongly supports #ShieldLaw because of the privacy protections it gives to individuals.

And that's it on HB 1469! Once again great testimony.

There are a couple more bills in the hearing but I'm going to sign off for now.

@threadreaderapp please unroll, thanks!