US healthcare marketplaces shared citizenship and race data with ad tech giants

https://techcrunch.com/2026/05/04/us-healthcare-marketplaces-shared-citizenship-and-race-data-with-ad-tech-giants/

by ZeidJ • 3 months ago

523 168 3 months ago

ZeidJ• 3 months ago

Bloomberg Study: https://www.bloomberg.com/features/2026-healthcare-advertisi...

shevy-java• 3 months ago

The US citizens will have to fight down those corporate overlords. It is now really just shameful how they leech off of the common man (and common woman). People in democracies outside of the USA shake their head in sadness now. Even Canada is doing better here - don't tell anyone the crazy orange king, for he may begin to potty-mouth and threaten them with invasion again.

aksss4• 3 months ago

corporate overlords? These are the state governments selling your data. The call is coming from inside the house. The sooner we realize that government is comprised of the same slithering slime of human greed and laziness, the more realistic discussions we can have.

DangitBobby3• 3 months ago

It's not even remotely the same scale. At least the government ostensibly has its incentives aligned with the public. False equivance gets us further from where we need to by focusing people on the wrong problems.

josefritzishere• 3 months ago

How is this not a HIPAA violation?

dekhn6• 3 months ago

HIPAA as a law is intended to ease transfer of medical information, not restrict it.

ux266478• 3 months ago

That's not true. It's intended to define a regulated and standard means of transferring medical information while ensuring confidentiality and patient privacy.

https://www.hhs.gov/hipaa/for-professionals/privacy/laws-reg...

You have to explicitly grant permission for your data to be sold. What's very likely is that either the healthcare provider or insurance company included a request for authorization to sell that data, and the authorization was signed without paying much attention to it.

SirFatty• 3 months ago

"The Health Insurance Portability and Accountability Act (HIPAA) of 1996 is a US federal law designed to protect sensitive patient health information from disclosure without consent."

aksss4• 3 months ago

Narrator: "But it did neither."

Honestly, we're better off with it than without it, speaking as someone with exposure to that industry's internals. That act drives a lot of good security practice within the organizations (mostly liability shifting, but still good). Specifically, the fear it instills of ruinous penalties from regulators drives good practice adoption, IME.

Further, multiple crappy patient portals across providers is a crummy experience, but it's an improvement over the world where providers held the data hostage and had zero interest in accommodating your requests for it, or even the idea that you owned it.

ButlerianJihad3• 3 months ago

The second “P” in HIPAA stands for “Privacy”

SoftTalker• 3 months ago

HIPAA applies to healthcare professionals and providers, not ad tech companies. And race and citizenship are not personal health-related data.

malcolmgreaves• 3 months ago

That's not actually true. It applies to health care data. If you're a software engineer making a system that includes HIPAA-protected data, you can face individual criminal liabilities for mishandling the data.

monksy• 3 months ago

It is if it connects an individual to an explicit health outcome or category.

Legend24402• 3 months ago

It might be a HIPAA violation, depending on the details of the data being shared. Several other healthcare websites have gotten in trouble over the same thing: https://techcrunch.com/2023/04/17/pixel-tracking-hipaa-start...

wewtyflakes• 3 months ago

It should be illegal to send the data, and illegal to accept it; burn both sides of that bridge.

Eddy_Viscosity2• 3 months ago

Why would politicians ever pass such a law? Who do you think they work for?

update: Yeah, my bad. The point of this comment was to express my increasing cynicism at how we just keep seeing this kind of corporate behavior over and over again and how even when a tiny win is achieved on things like data collection, right to repair, ease for cancelling subscriptions, privacy, and so on and so on, they are so quickly over taken by new tactics or clawbacks/loopholes/non-enforcement of those laws. HN comments was probably the wrong place to vent and its too late to delete it.

post-it• 3 months ago

What's the point of this kind of comment? Have pro-citizen anti-corporate laws never been passed in the past?

wat100002• 3 months ago

Ideally because we'd vote in politicians who would do it, and vote out those who didn't.

applfanboysbgon2• 3 months ago

They work for the people. In some countries, people actually vote for politicians that benefit the population. In other countries, people repeatedly vote for politicians despite knowing that those politicians are only interested in enriching themselves, with a track record going back decades of doing nothing but that. The problem, then, is the voters in certain countries, not the politicians.

bell-cot• 3 months ago

I wouldn't be surprised if both are illegal. But these days, the correlation between "X is illegal" and "larger org's do not do X" just ain't what it yousta be.

idle_zealot2• 3 months ago

My understanding is that it's legal with opt-in, but the opt-in is allowed to be confusing, opaque, and sticky, so most people "consent" without informed consideration. We really need to revisit contract law in a modern context. Call me crazy but I don't think it's reasonable that our society operates in such a way that easily 90+% of people are subject to contract terms they signed but don't know or understand.

goda90• 3 months ago

Every piece of data collected should be an opt-in both for the initial collection and any sharing to a third party. There should be an explanation for why it is collected and an explanation for what features are not possible if it is not collected. It should be a violation of the law to disable a feature based on failure to opt-in for data points that aren't absolutely necessary for the operation of that feature.

traderj0e7• 3 months ago

At least make it an explicitly protected right to lie about your race in any context. It's a lot easier to ruin a dataset than it is to hide from it.

tardedmeme4• 3 months ago

What would happen if you just lied? I guess you wouldn't get healthcare coverage once they found out? But isn't there something in law about material damages, they'd have to prove you cost them money by choosing the wrong race?

rationalist• 3 months ago

Yes, but does anyone treat it as ruined, or do you get targeted for both/all races?

If someone targets black people, you're on that list; if someone targets white people, you're also on that list!

nostromo2• 3 months ago

I wish it were illegal to ask or record people's race in any commercial context in the US.

2ndorderthought• 3 months ago

Well the tech companies/offense contractors are probably using it to enrich the department of wars efforts. Hmm I wonder what they want race and citizenship data for? Ohhh... Oh...

kevin_thibedeau3• 3 months ago

It's a tracking pixel. They fool you into sending it.

janalsncm2• 3 months ago

The relevant facts are that the website owner voluntarily put the tracking code on their own website, and the tracking code worked as designed.

afavour• 3 months ago

A technicality without a meaningful difference. Users didn't consent to sending it, nor were they aware of it.

staz• 3 months ago

If someone attach a bomb to you car that detonate when you start the motor; they didn't fool you into killing yourself.

adamnemecek• 3 months ago

That's like saying that Ted Kaczynski was innocent, because he didn't force anyone to open the packages.

analog31• 3 months ago

I think possession of the data should be illegal. And it should be subject to statutory damages, like music piracy.

mistrial9• 3 months ago

anecdata - in Berkeley CA, in the late 2010s, two individuals showed up to be in the fast-paced AD scene. One was from a former Soviet Union country, who spoke English pretty well .. and the other a woman from Columbia .. to say that both of these two were "aggressive" is an understatement. He spoke English, she was in charge of "security" .. after a very few meetups, they both formed a company for "Ad tech for Hospitals" .. it was "heavy security" they said, and therefore did not discuss any details in public. They very obviously would do "aggressive" actions to get into the business, defeat competitors, and satisfy ..clients? Who were they satisfying with the cultural norms, constantly aggressive stance, move fast and break things approach? Every single person involved had the motivation of Big Money, Now.

oarla• 3 months ago

Relevance?

anigbrowl• 3 months ago

OK, who? Vagueposting doesn't help anyone.

levocardia• 3 months ago

The actual "sharing" was using the Meta pixel and TikTok's equivalent, presumably so the healthcare exchanges could do retargeting or similarity-based marketing to get people to sign up for health care coverage. Which, narrowly, seems like a reasonable thing to do. But of course using the pixel automatically "shares" the data with Meta/ByteDance/whoever, and they get to use it for whatever nefarious purpose they want.

nickburns2• 3 months ago

The state healthcare exchanges doing any kind of targeting and/or marketing, even to 'get people' to sign up for subsidized healthcare, could also be conceived of as unreasonable. I could be wrong, but I wouldn't think their mandate under the ACA contemplates any targeting or marketing of themselves whatsoever—even if it's ostensibly to increase enrollment.

That it feels like there's an implicit assumption that they would (target or market) seems to be part of the problem.

vkou2• 3 months ago

could also be conceived of as unreasonable

It could also be conceived of as perfectly reasonable. One of the many (some very flawed) purposes of the ACA was to get more people insured, advertising that state-subsidized insurance is available for you is absolutely in that wheelhouse.

If retargeting is the problem, it should be banned across the board, both for public and private ad campaigns.

pengaru• 3 months ago

What was that saying about paving the roads to hell?

Spooky232• 3 months ago

Nefarious indeed. Once they know who you are, they match you against insurance industry databases and can infer many health conditions and other stuff.

If you’re timely with prenatal care, marketers can predict a woman’s delivery data within a week with high confidence.

vkou2• 3 months ago

Obamacare banned insurer price discrimination for pre-existing conditions.

fusslo• 3 months ago

Nearly all of the 20 state-run health insurance exchanges in the US have added advertising trackers that transmit user activity

...why?

State officials say they embed this technology on the exchanges to measure marketing campaigns and to advertise to people who visit their sites

What an absurdist reality we live in

Tara Lee, a spokesperson for the Washington state exchange, said the tracker on the site was used for advertising campaigns, adding that email, phone and country identifiers were shared with TikTok.

https://www.bloomberg.com/features/2026-healthcare-advertisi...

Personally, I feel local government should not be engaging these services in this way. I don't feel that it's a wise use and that our government employees should be more protective of the public who use their services.

Legend24402• 3 months ago

...why?

The same reason that I put Google Analytics on my blog in 2014. They want to know how many people are using their site and how.

And like me, they didn't think about the fact that these analytics services are run by advertising companies that may use the data for other purposes. Unlike me, they have privacy laws to follow because they work with health data.

nickburns2• 3 months ago

They want to know how many people are using their site and how.

Yeah, why?

lava_pidgeon• 3 months ago

Cookie Banner isn't such a bad idea now

xp843• 3 months ago

Nah, it’s still stupid and pointless

lesuorac• 3 months ago

Why shouldn't somebody has to ask for permission before using your stuff (disk space)?

It's just by default nobody really wants to give up disk space so you can do better ad tracking so the banner is necessary to convince them to.

downbad_• 3 months ago

The richest tech companies and richest men in the world got rich by invading people's privacy and selling invasive ads.

TehCorwiz• 3 months ago

The richest tech companies and richest men in the world got rich by invading people's privacy and ~selling invasive ads.~

I think you mean "manipulating content algorithms to favor their viewpoints and to target individuals for maximum effect."

mcmcmc2• 3 months ago

They got rich because people were stupid enough to think free services come without a cost.

consumer4512• 3 months ago

If we have learned anything in recent decades, it is that we are all easily manipulated, and we are all pretty darn stupid.

tardedmeme4• 3 months ago

People prefer to pay with tracking data instead of money because they have lots of tracking data and not much money.

MSFT_Edging• 3 months ago

Translation: The government does little to protect their citizens from predatory business practices because those in power have gained power via predatory business practices and have tricked many people into believing it's their own failings for being made a victim.

Crypto rug-pulls are now done by a sitting president and if you complain you simply have a "victim mentality" because you're not looking for a way to exploit your neighbor.

We should really be embarrassed of our selves yet people come on here every day to defend the scammers.

themafia• 3 months ago

Ah yes. The casual misanthropy explanation.

Isn't there supposed to be a vast and powerful federal government with incredible investigatory and arrest powers? The one that people are taught to rely on since they stand no chance against a trillion dollar monopoly?

jjtheblunt2• 3 months ago

You overlooked plain cronyism in Russia 1991 and after, for example, and actual rich people who just invested very long ago, and repetitively over time, in companies making money (not timing the stock market), like Charlie Munger and Warren Buffett.

Ylpertnodi2• 3 months ago

Who is clicking on the ads though?

BeetleB• 3 months ago

Looking at the 15 richest people in the world, 11 did not get rich that way.

tantalor• 3 months ago

whether they provided details about whether they have incarcerated family members

Okay. That's not much of a signal, is it? This is "metadata" level of detail.

tamimio• 3 months ago

US isn’t a country, it’s an economic zone run by few corporates, who bribe and push law makers to pass whatever laws they like, everyone is winning except the citizens of that “country”.

xp843• 3 months ago

I’m more annoyed that these government healthcare marketplaces are asking people their race in the first place. Really don’t think anything should be, including job applications.

jjtheblunt2• 3 months ago

I never (in the US) have understood why those questions include separate questions for race (seems to be like white or black or asian) and for ethnicity, including a really odd question about Latino or non Latino.

Why those questions, but no Danish vs non Danish, and so on?

nostromo2• 3 months ago

It's because latinos can be white, black, or native - and historically most people tracking these data wanted to group latinos independently of non-latino whites, blacks, and natives.

dominotw• 3 months ago

do they ask about pre existing conditions? then prbly race also makes sense.

worik3• 3 months ago

do they ask about pre existing conditions? then prbly race also makes sense

Why?

xp843• 3 months ago

1. one of the main points of the ACA that hasn't been rolled back is that they can't worry about pre-existing conditions anymore

2. even if they could, it would be pretty illegal, I think/hope, to then be like "Oh, well your sickle cell anemia is going to be paid for differently, because everyone knows black people statistically have more of that.

TallGuyShort• 3 months ago

I used a state (Colorado) healthcare marketplace website when I was going to take a break between jobs for a couple of months, and I feel very violated by the whole process. I entered a bunch of information to the website, knowing that the data could be expected to be shared for quotes, but I got no quote. The information didn't just flow between systems, it was just sent directly to a bunch of individuals. Instead of getting anything useful from the website, I just got told that agents would contact me, and then literally hundreds of agents were calling and texting me at all hours of the day and night for weeks. I asked one of them how to get it to stop and they said it was impossible during the government shutdown.

consumer4512• 3 months ago

Welcome to the reality of the US federal government not even trying to do something like GDPR.

paulryanrogers• 3 months ago

The dysfunction is intentional. Baby steps to rollback ACA. Every small inconvenience pushes voters closer to their side.

WillPostForFood2• 3 months ago

Possible you got tricked into using a private site that buys the first google sponsored google result, and talks like it is the official Colorado site but is just lead gen?

https://i.imgur.com/d2fZlTc.png

streb-lo• 3 months ago

How is that even legal?

offmycloud• 3 months ago

I'm still surprised by the number of web developers who do not understand that, once you include someone else's Javascript on your site, they have full access to everything on your site, including all submitted customer data.

krior3• 3 months ago

Can someone from the US explain what race even means in this context and how it is determined?

durkie• 3 months ago

i believe it is self-declared.

BowBun2• 3 months ago

Yes, this is a common point of confusion when talking to Europeans about racial issues in the US (as I found out myself recently). Race in our contexts refers to your background/birthplace/heritage. On our government forms: "What race are you?" "White, black, hispanic, etc."

This is fundamentally different by intent than in Europe (using french here) where we refer to 'la race humaine' which is the _species_.

The nuance is critical during debates. While I was discussing racial differences to some Swiss folks, they thought I was talking Nazi propaganda! We are all part of the human species, the human species has many races. We are all equal!

Ylpertnodi2• 3 months ago

Most Europeans are NOT confused by this. Sheesh.

krior3• 3 months ago

background/birthplace/heritage

Are those slashes AND or OR?

rf15• 3 months ago

they thought I was talking Nazi propaganda!

well, I mean, listen, if it's part of the census, that's... still government-level racial discrimination. It might not be a duck, but this thing has a certain duck-shaped silhuette.

_--__--__2• 3 months ago

It is self reported according to the US census recognized racial categories: white, black, asian, native American/Alaskan, native Hawaiian or Pacific islander, and other (or two+ categories). Hispanic/latino identification is a separate box you check for reasons that are hard to explain without going over decades of bureaucratic decisions.

krior3• 3 months ago

US census recognized racial categories

Thank you for a googleable term.

Are there any guides on how to decide which "race" you are? Because I cannot imagine that everyone knows exactly which part of the earth all of their ancestors originate from.

nomel2• 3 months ago

All levels of the US education system teach (now at least) that race is a social construct. There's no concept of population-genetics taught, until much later, in hard science classes.

ButlerianJihad3• 3 months ago

There are various risk factors, and some lab tests, that differ among racial groups.

For example, my labs include at least two that have different specified thresholds for "African-American" or "non-AA" patients.

https://en.wikipedia.org/wiki/Sickle_cell_disease#United_Sta...

alucardo• 3 months ago

"race data"... this isn't a thing, this should not be a thing. am i the only one being shocked?

Pacers31Colts18• 3 months ago

This is nothing new. They do the same with drivers license data.

zx8080• 3 months ago

For someone not familiar with the US legal system, something is not clear here: if that's Meta/Facebook tracking via pixel, than why it's not possible to sue them for it?

Or if that tracking is considered legal in this particular case - WHY?

kittikitti• 3 months ago

From my experience working with health data, HIPAA laws are utilized to generate leverage against whoever the gatekeepers want. There's no expectation of privacy for anyone with HIPAA, it's a failed policy meant to intimidate. They hold up a disguise that it's very hard and strict and enforce these regulations to punish whoever they deem unworthy. Usually, it's big corporations targeting competition with needles lawsuits.

I've seen unfathomable abuses in HIPAA privacy laws. Some of it is was for my own health records. If you only knew how bad it was. I can't detail it all because their lawyers will bully and intimidate me like they already have.

HIPAA was a way to provide surveillance of your health. Corporations, governments, law enforcement, healthcare professionals, or even a petulant child that annoys a parent who's a doctor has access to everyone's health records. The public sentiment on HIPAA laws is just so backwards.

avazhi• 3 months ago

Ok?

2 relevant attributes as it turns out.

giwook• 3 months ago

And just when you thought the American healthcare landscape couldn't be any more fucked.

jaspanglia• 2 months ago

Healthcare and caregiving products depend heavily on user trust. Even useful technology can create hesitation if users don’t clearly understand how their data is being stored, shared, or used.

US healthcare marketplaces shared citizenship and race data with ad tech giants

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