#hippaes

[mostlysignssomeportents]

Privacy first

The internet is embroiled in a vicious polycrisis: child safety, surveillance, discrimination, disinformation, polarization, monopoly, journalism collapse – not only have we failed to agree on what to do about these, there's not even a consensus that all of these are problems.

But in a new whitepaper, my EFF colleagues Corynne McSherry, Mario Trujillo, Cindy Cohn and Thorin Klosowski advance an exciting proposal that slices cleanly through this Gordian knot, which they call "Privacy First":

https://www.eff.org/wp/privacy-first-better-way-address-online-harms

Here's the "Privacy First" pitch: whatever is going on with all of the problems of the internet, all of these problems are made worse by commercial surveillance.

Worried your kid is being made miserable through targeted ads? No surveillance, no targeting.

Worried your uncle was turned into a Qanon by targeted disinformation? No surveillance, no targeting. Worried that racialized people are being targeted for discriminatory hiring or lending by algorithms? No surveillance, no targeting.

Worried that nation-state actors are exploiting surveillance data to attack elections, politicians, or civil servants? No surveillance, no surveillance data.

Worried that AI is being trained on your personal data? No surveillance, no training data.

Worried that the news is being killed by monopolists who exploit the advantage conferred by surveillance ads to cream 51% off every ad-dollar? No surveillance, no surveillance ads.

Worried that social media giants maintain their monopolies by filling up commercial moats with surveillance data? No surveillance, no surveillance moat.

The fact that commercial surveillance hurts so many groups of people in so many ways is terrible, of course, but it's also an amazing opportunity. Thus far, the individual constituencies for, say, saving the news or protecting kids have not been sufficient to change the way these big platforms work. But when you add up all the groups whose most urgent cause would be significantly improved by comprehensive federal privacy law, vigorously enforced, you get an unstoppable coalition.

America is decades behind on privacy. The last really big, broadly applicable privacy law we passed was a law banning video-store clerks from leaking your porn-rental habits to the press (Congress was worried about their own rental histories after a Supreme Court nominee's movie habits were published in the Washington City Paper):

https://en.wikipedia.org/wiki/Video_Privacy_Protection_Act

In the decades since, we've gotten laws that poke around the edges of privacy, like HIPAA (for health) and COPPA (data on under-13s). Both laws are riddled with loopholes and neither is vigorously enforced:

https://pluralistic.net/2023/04/09/how-to-make-a-child-safe-tiktok/

Privacy First starts with the idea of passing a fit-for-purpose, 21st century privacy law with real enforcement teeth (a private right of action, which lets contingency lawyers sue on your behalf for a share of the winnings):

https://www.eff.org/deeplinks/2022/07/americans-deserve-more-current-american-data-privacy-protection-act

Here's what should be in that law:

A ban on surveillance advertising:

https://www.eff.org/deeplinks/2022/03/ban-online-behavioral-advertising

Data minimization: a prohibition on collecting or processing your data beyond what is strictly necessary to deliver the service you're seeking.

Strong opt-in: None of the consent theater click-throughs we suffer through today. If you don't give informed, voluntary, specific opt-in consent, the service can't collect your data. Ignoring a cookie click-through is not consent, so you can just bypass popups and know you won't be spied on.

No preemption. The commercial surveillance industry hates strong state privacy laws like the Illinois biometrics law, and they are hoping that a federal law will pre-empt all those state laws. Federal privacy law should be the floor on privacy nationwide – not the ceiling:

https://www.eff.org/deeplinks/2022/07/federal-preemption-state-privacy-law-hurts-everyone

No arbitration. Your right to sue for violations of your privacy shouldn't be waivable in a clickthrough agreement:

https://www.eff.org/deeplinks/2022/04/stop-forced-arbitration-data-privacy-legislation

No "pay for privacy." Privacy is not a luxury good. Everyone deserves privacy, and the people who can least afford to buy private alternatives are most vulnerable to privacy abuses:

https://www.eff.org/deeplinks/2020/10/why-getting-paid-your-data-bad-deal

No tricks. Getting "consent" with confusing UIs and tiny fine print doesn't count:

https://www.eff.org/deeplinks/2019/02/designing-welcome-mats-invite-user-privacy-0

A Privacy First approach doesn't merely help all the people harmed by surveillance, it also prevents the collateral damage that today's leading proposals create. For example, laws requiring services to force their users to prove their age ("to protect the kids") are a privacy nightmare. They're also unconstitutional and keep getting struck down.

A better way to improve the kid safety of the internet is to ban surveillance. A surveillance ban doesn't have the foreseeable abuses of a law like KOSA (the Kids Online Safety Act), like bans on information about trans healthcare, medication abortions, or banned books:

https://www.eff.org/deeplinks/2023/05/kids-online-safety-act-still-huge-danger-our-rights-online

When it comes to the news, banning surveillance advertising would pave the way for a shift to contextual ads (ads based on what you're looking at, not who you are). That switch would change the balance of power between news organizations and tech platforms – no media company will ever know as much about their readers as Google or Facebook do, but no tech company will ever know as much about a news outlet's content as the publisher does:

https://www.eff.org/deeplinks/2023/05/save-news-we-must-ban-surveillance-advertising

This is a much better approach than the profit-sharing arrangements that are being trialed in Australia, Canada and France (these are sometimes called "News Bargaining Codes" or "Link Taxes"). Funding the news by guaranteeing it a share of Big Tech's profits makes the news into partisans for that profit – not the Big Tech watchdogs we need them to be. When Torstar, Canada's largest news publisher, struck a profit-sharing deal with Google, they killed their longrunning, excellent investigative "Defanging Big Tech" series.

A privacy law would also protect access to healthcare, especially in the post-Roe era, when Big Tech surveillance data is being used to target people who visit abortion clinics or secure medication abortions. It would end the practice of employers forcing workers to wear health-monitoring gadget. This is characterized as a "voluntary" way to get a "discount" on health insurance – but in practice, it's a way of punishing workers who refuse to let their bosses know about their sleep, fertility, and movements.

A privacy law would protect marginalized people from all kinds of digital discrimination, from unfair hiring to unfair lending to unfair renting. The commercial surveillance industry shovels endless quantities of our personal information into the furnaces that fuel these practices. A privacy law shuts off the fuel supply:

https://www.eff.org/deeplinks/2023/04/digital-privacy-legislation-civil-rights-legislation

There are plenty of ways that AI will make our lives worse, but copyright won't fix it. For issues of labor exploitation (especially by creative workers), the answer lies in labor law:

https://pluralistic.net/2023/10/01/how-the-writers-guild-sunk-ais-ship/

And for many of AI's other harms, a muscular privacy law would starve AI of some of its most potentially toxic training data:

https://www.businessinsider.com/tech-updated-terms-to-use-customer-data-to-train-ai-2023-9

Meanwhile, if you're worried about foreign governments targeting Americans – officials, military, or just plain folks – a privacy law would cut off one of their most prolific and damaging source of information. All those lawmakers trying to ban Tiktok because it's a surveillance tool? What about banning surveillance, instead?

Monopolies and surveillance go together like peanut butter and chocolate. Some of the biggest tech empires were built on mountains of nonconsensually harvested private data – and they use that data to defend their monopolies. Legal privacy guarantees are a necessary precursor to data portability and interoperability:

https://www.eff.org/wp/interoperability-and-privacy

Once we are guaranteed a right to privacy, lawmakers and regulators can order tech giants to tear down their walled gardens, rather than relying on tech companies to (selectively) defend our privacy:

https://pluralistic.net/2022/11/14/luxury-surveillance/#liar-liar

The point here isn't that privacy fixes all the internet's woes. The policy is "privacy first," not "just privacy." When it comes to making a new, good internet, there's plenty of room for labor law, civil rights legislation, antitrust, and other legal regimes. But privacy has the biggest constituency, gets us the most bang for the buck, and has the fewest harmful side-effects. It's a policy we can all agree on, even if we don't agree on much else. It's a coalition in potentia that would be unstoppable in reality. Privacy first! Then – everything else!

If you'd like an essay-formatted version of this post to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:

https://pluralistic.net/2023/12/06/privacy-first/#but-not-just-privacy

Image: Cryteria (modified) https://commons.wikimedia.org/wiki/File:HAL9000.svg

CC BY 3.0 https://creativecommons.org/licenses/by/3.0/deed.en

[frogsandmagic]

Cackling at how Jawbone never found out that riz stole kipperlilly’s files and he will NOT be facing any consequences for doing so. Go silly little man!! Steal private files from someone’s counseling sessions!! When the counselor is also your friends dad who you see regularly!!

[nematodeneedles]

animated Stretch Panic fanart song: 808 State - State to State (Quadrastate version)

[multcolib]

Published in the Paris the year the Bastille was stormed, Voyage autour du monde includes images and maps of the northwest coast of America.

[mundanesalad]

i have not forgotten movie night.

[juniperhillpatient]

if u work in healthcare ur not working a shitty customer service job it doesn’t matter how frustrating or difficult the people in ur care may be or what kind of day ur having u HAVE to be nice to the people in ur care & supportive of their needs because they rely on u & bedside manner isn’t an optional fucking part of the job

[thesunoficarus1]

alternate hannibal universe where hannibal never gets caught as a murderer/cannibal but does go to jail for violating the patient/therapist barrier

[redfish-blu]

So in the song 20 Dollar Nosebleed he says to call him “Mr. Benzedrine” but later in the Suitehearts music video he is credited as one “Dr. Benzedrine” which means he got his doctorate. I bet he used chatgpt to write his dissertation.

[amethystskeleton]

Apparently midnight is just the perfect timing for bad ideas. While working on Chapter 8 of 'To be Led by a Liar' I got the horrible idea to watch though the entire show from the beginning and see what each character could be criminally charged with. Because (lets be so real here) just because the pack is against murder and killing (75% of the time) doesn't mean they aren't very much committing other crimes. Idk it just sounds really funny to see who would get the most amount of jail time for their actions.

[byrdsfly]

Me muted during an unpaid mandatory work zoom/phone meeting:

[detentiontrack]

Why can’t greys anatomy have any normal patients? Every case starts out with like “this is Jane Smith, she’s here for a standard appendectomy :)” and then by mid episode it’s like “Jane Smith is actually a part of a cult of vampires and 100,000 vampire members are going to storm the hospital and make everyone vampires, and also the head neurosurgeon grew up in the vampire cult and is now torn between her sexy intern and the head vampire from the vampire cult.”

[xythlia]

my bf being a therapist is actually really enlightening because I've learned a whole lot about how to spot a bad therapist

[the-final-sif]

All this practice of dragging out the past just to determine a secondary gender is despicable. I have 0 reason or want to know if any of the dteam are 'destined mates' and every time some new piece of info gets dragged out I wish Twitter had never been invented. My only consolation is just how much HIPAA is actually enforced :/

Just leave the poor guys alone.

Listen, not that I'm not also frustrated, but let's remember that HIPAA only covers doctors and medical establishments. It doesn't cover twitter unless it's his family doctor leaking that shit.

Putting that aside, I'll be honest my hot take is the entire debate is pointless because I don't believe in biologically destined mates. I think it's a holdover from a traditionalist past, and I agree with Dream when he said he doesn't care about that. Your destined mates are the people you chose to share your life with, not whoever some dumb hormone says you need to be claiming.

[madtomedgar]

I also really dislike jemison's visionary fiction specifically because behavioral euthanasia for humans is framed as a positive good and that weirds me out

[my-thoughts-and-junk]

for awhile i refused to watch hannibal because the relationship between hannibal and will made me uncomfortable. not because of literally everything about them but because hannibal was his therapist and him abusing his power made me uncomfortable

[juniperhillpatient]

working in a field that requires empathy & caring is fun because it will occasionally tear you apart inside & leave you sleep deprived & riddled with anxiety lol