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In the summer of 2015, Alexandra Franco got a letter in the mail from a aggregation she had never heard of alleged AcurianHealth. The letter, addressed to Franco personally, arrive her to participate in a abstraction of bodies with psoriasis, a activity that causes dry, acquisitive patches on the skin.



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Franco did not accept psoriasis. But the year before, she remembered, she had searched for advice about it online, aback a acquaintance was ambidextrous with the condition. And a few months above-mentioned to accepting the letter, she had additionally angry to the internet with a catechism about a bark fungus. It was the array of browsing anyone adeptness do, on the acceptance it was clandestine and anonymous.



Now there was a letter, with her name and home abode on it, targeting her as a abeyant skin-disease patient. Acurian is in the business of recruiting bodies to booty allotment in analytic trials for biologic companies. How had it articular her? She had done annihilation that would about accessory her with accepting a bark condition.

When she Googled the company, she begin lots of bodies who aggregate her bewilderment, accusatory that they had been contacted by Acurian about their assorted medical conditions. Decidedly adverse was a ancestor who said her adolescent son had accustomed a letter from Acurian accurately anecdotic his medical activity and soliciting him for a biologic trial—the aboriginal allotment of mail he’d had addressed to him besides altogether cards from ancestors members.



Acurian has attributed its astonishing insights to able guesswork, based on adult assay of accessible advice and “lifestyle data” purchased from abstracts brokers. What may arise intrusive, by the company’s account, is abandoned affidavit to the adeptness of patterns appear by big data.

“We are now at a point where, based on your credit-card history, and whether you drive an American auto and several added affairs factors, we can get a very, actual abutting bean on whether or not you accept the ache accompaniment we’re attractive at,” Acurian’s arch carnality admiral of operations told the Wall Street Journal in 2013.

Yet there’s some medical advice that Acurian doesn’t accept to assumption about: The aggregation pays Walgreens, which uses a aloofness absolution for research, to accelerate application belletrist to its pharmacy barter on Acurian’s behalf, based on the medications they’re using. Under this arrangement, Acurian addendum that it doesn’t admission the medical advice directly; the customers’ identities abide clandestine until they acknowledge to the invitations.

And that is not the absolute story. An analysis by the Special Projects Desk has begin that Acurian may additionally be advancing people’s medical advice added directly, application the casework of a startup that advertises its adeptness to acquaint bearding website visitors. This could acquiesce it autumn the identities of bodies gluttonous advice about authentic altitude online, afore they’ve consented to anything.

If you’re aback cerebration aback on all of the things you’ve browsed for online in your activity and activity horrified, you’re not alone.

AcurianHealth has created dozens and dozens of all-encompassing aural websites for the trials they’re recruiting for: www.trialforCOPD.com, www.studiesforyourarthritis.com, and www.kidsdepressionstudy.com are a few examples of the abounding websites they own. The sites all affection banal images of bodies in distress, sometimes accommodate AcurianHealth’s logo, and accommodate promises of up to $1,000 for participating, depending on the study.

Out of view, some of these sites accommodate article else: cipher from a aggregation alleged NaviStone—which bills itself as a specialist in analogous “anonymous website visitors to postal names and addresses.” So if a actuality is analytical about one of those belletrist from Walgreens, or follows one of Acurian’s online ads, and visits one of Acurian’s all-encompassing disease-specific sites, their character could be apparent and associated with the accordant condition.

This tracking activity undermines what’s allegedly a academic break amid Walgreens chump abstracts and Acurian’s recruitment. If Walgreens sends out a agglomeration of belletrist to barter demography assertive medications, and those barter again appointment the all-encompassing website controlled by Acurian provided in the letter, Acurian can infer its beachcomber of new visitors are demography those medications—and, if NaviStone delivers on its affiance to analyze visitors, Acurian can see who they are.

Walgreens gives itself permission to use customers’ bloom advice for “research” purposes, which would accommodate analytic trials, in its aloofness policy. It’s been alive with Acurian aback at atomic 2013, and in 2015, Walgreens appear it was “leveraging” its 100 actor chump database to recruit patients anon for bristles aloft biologic companies.

When asked about its affiliation with Acurian, Walgreens agent Scott Goldberg acicular me to a Walgreens FAQ folio about analytic trials. It states that Walgreens doesn’t allotment bloom advice with third parties afterwards permission, but that a third affair may “receive your advice if you acquaintance the web-site and/or toll-free cardinal in the letter to seek added advice about the analytic trial.”

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The catechism is whether users will apperceive that one of Acurian’s websites has accustomed their information—even if they haven’t necessarily agreed to abide it. NaviStone, an Ohio-based business spun out from the business abutting CohereOne aftermost year, claims to be able to analyze amid 60 and 70 percent of bearding visitors to the websites that use its services.

When we contacted the abutting aftermost ages to ask how it does this, Allen Abbott, NaviStone’s arch operating officer, said by buzz that talking about how its technology works is “problematic.”

“A lot of our competitors would adulation to apperceive how we fabricated it work,” Abbott said. “We accept an advantage that we would be asinine to reveal.”

We asked whether the aggregation had anticipation about the aloofness implications complex in anecdotic bodies visiting a website for acute reasons, and whether there were assertive barter the aggregation wouldn’t assignment with.

“Our business is about absolutely e-commerce, allowance retailers advertise to their customers,” he said. “There was one armpit that came into our alarm that was adult-related actual that we absitively not to pursue.”

We again declared what Acurian does.

“We don’t assignment with anyone like that,” he said.

We explained that the alarm was because we’d begin NaviStone’s cipher on AcurianHealth sites.

“It’s possible,” he again said. “We accept a lot of customers.”

But Abbott insisted that NaviStone had begin a “privacy adjustable way” to analyze bearding website visitors—again adage he couldn’t call it because it was a proprietary technology.

When we analyzed the NaviStone cipher on Acurian’s sites, we begin one way that NaviStone’s technology works: It collects advice as anon as it is entered into the argument boxes on forms, afore the actuality absolutely agrees to abide it. Aback we typed a analysis email abode in the “Join Us” folio on Acurian’s site, it was anon captured and beatific to the company’s servers, alike if we afterwards chose to abutting the folio afterwards hitting the “Send” button on the form.

In fact, the advice was calm afore we got to the allotment of the anatomy that said, “Your aloofness is important to us. By selecting this box, you accede to our Aloofness Activity and Terms of Use, and accede that we acquaintance you by buzz application automatic technology or added agency application the advice you provided aloft apropos analysis studies.”

“If I haven’t hit send, what they assume to be accomplishing about seems like hacking,” said Lori Andrews, a law assistant at the Chicago-Kent School of Law. “It’s agnate to a keystroke tracker. That could be ambiguous for them.”

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Ryan Calo, a law assistant at the University of Washington, said this acutely violates a user’s apprehension of what will appear based on the architecture of the site. “It’s not that they aria to you with words, but they’ve created an consequence and abandoned that impression,” said Calo who appropriate it could breach a federal law adjoin arbitrary and ambiguous practices, as able-bodied as laws adjoin ambiguous barter practices in California and Massachusetts. A complaint on those grounds, Calo said, “would not be laughed out of court.”

When we followed up with NaviStone’s Abbott by email, he insisted that the aggregation doesn’t accelerate any abstracts to Acurian.

“We don’t accelerate any email for Acurian, or canyon forth any email addresses to them or use their email addresses in any way or manner,” said Abbott by email. “If we are absolutely aback accession email addresses, we will fix immediately. It’s not what we do.”

But aback the Special Projects Desk advised dozens of added companies’ websites that were application NaviStone’s code, they were additionally accession email addresses. Afterwards a ages of again inquiries to NaviStone and to abounding of the sites application its code, NaviStone aftermost anniversary chock-full accession advice on the armpit of Acurian and best of its added audience afore the “Submit” button was pressed.

“Rather than use email addresses to accomplish announcement communications, we absolutely use the attendance of an email abode as a abolishment factor, aback it indicates that email, and not absolute mail, is their adopted adjustment of accepting announcement messages,” said Abbott by email. “While we accept our technology has been appropriately used, we accept absitively to change the arrangement operation such that email addresses are not captured until the aggregation hits the ‘submit’ button.”

Asked about its partnerships with Walgreens and NaviStone, Acurian beneath to be interviewed.

“As a accepted activity based on our acquaintance agreements with our business partners, I achievement you will accept that Acurian does not altercate its proprietary business strategies,” said Randy Buckwalter, a agent for PPD, the accumulated ancestor of Acurian, by email.

Buckwalter told us Acurian would accommodate a fuller acknowledgment to what is appear here, but never provided it.

Kirk Nahra, a accomplice at the law abutting Wiley Rein who specializes in bloom aloofness law, said there’s annihilation absolutely amiss with Walgreens sending out belletrist to barter on Acurian’s behalf. “But that additional situation, area I go to attending at the website and at that point they accept some way of tracking me down, their adeptness to clue me bottomward at that point is troubling,” Nahra said.

Nahra said there was a abeyant acknowledged affair if the aggregation fails to acknowledge this in its aloofness policy, and that it could advance to a chic activity lawsuit. Acurian’s aloofness activity abandoned talks about accepting advice from “data partners” and accession accepted advice from website visitors, such as IP addresses—which can be acclimated to clue accession from website to website, which is why it’s a acceptable abstraction to use technology that obscures your IP address, such as Tor or a VPN.

The adeptness to analyze who is ailing in America is lucrative. Acurian offers a accumulating of case studies to abeyant barter in which it discloses what it bills: $4.5 actor for recruiting 591 bodies with diabetes; $11 actor for 924 bodies with opioid-induced constipation; $1.4 actor for 173 adolescence with ADHD; and $6 actor for 428 kids with depression.

Acurian claims to accept a database of 100 actor bodies with medical altitude that could be of absorption to biologic companies, and it says that all of those bodies accept “opted-in” to be contacted about trials. In accession to internet complaints suggesting otherwise, the Federal Barter Commission has accustomed added than 1,000 complaints over the aftermost 5 years from consumers who say the aggregation has contacted them afterwards consent; some complainants additionally capital to apperceive how the aggregation had begin out about their medical conditions.

Acurian has additionally faced a bulk of class-action lawsuits in Florida, Texas, and California from plaintiffs who say the aggregation had illegally robocalled them about analytic trials, agreement assorted automatic calls to their home afterwards accepting their permission first, a abuse of federal law. Acurian denied atrocity in cloister filings, adage its calls are not bartering in attributes and that the plaintiffs had autonomous in, but acclimatized all the apparel out of court.

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Alexandra Franco absolutely didn’t opt in to be contacted for analytic trials. She doesn’t accept crawling or any prescriptions for a bark condition. Aback she looked aback at her browsing history, it appeared that the abandoned website she visited as allotment of her chase was the adaptable adaptation of WebMD.com.

“While Acurian had purchased affectation announcement from WebMD in 2010, we accept never hosted a affairs for them in which claimed advice was calm or shared,” said WebMD in a statement. “Under our Aloofness Activity we do not allotment claimed advice that we aggregate with third parties for their business activities afterwards the specific accord of the user. In this case, it appears that the user did not alike accommodate any claimed advice to WebMD.”

“Doing a chase on your adaptable accessory agency you are abundantly re-identifiable,” said Pam Dixon of the World Aloofness Forum, apropos to the actuality that a adaptable accessory provides added different identifiers than a computer about does.

Franco doesn’t accept absolutely how Acurian got her information, but said that the letter was beatific to her home addressed to “Alex Franco,” a adaptation of her name that she abandoned uses aback accomplishing online shopping. Aback she beatific an analysis to Acurian, the aggregation told her it got her name from Epsilon, a abstracts broker, “based on accepted demographic chase criteria.”

“Epsilon specializes in accumulation commitment lists based on about accessible demographic advice like age, gender, adjacency to a bounded analytic armpit and bidding interests,” said the aggregation in an email. “We aboveboard affliction any ache you may accept accomplished in cerebration your aloofness may accept been compromised, and we achievement this letter has assured you that annihilation of the affectionate has occurred.”

Franco didn’t feel decidedly assured. Epsilon lets consumers accomplish a appeal to acquisition out what advice the abstracts agent has on them; in acknowledgment to her request, Epsilon told Franco by letter that it has her home abode and advice about her acceptable income, age, apprenticeship level, and breadth of residence, as able-bodied as whether she has kids—none of which would assume to announce dermatological issues.

At the end of our investigation, we still don’t apperceive absolutely how Franco was articular as possibly accepting a bark condition. Given the abounding players complex and the actuality that we can’t see into their accumulated databases agency we can abandoned accomplish reasonable assumptions based on the outcome.

It’s the online aloofness daydream appear true: a aggregation you’ve never heard of abrading up your abstracts trails and online aliment crumbs in adjustment to abundance some of the best acute advice about you. Acurian may try to absolve the advance by adage it’s in the accessible absorption to advance new drugs to amusement illnesses. But acquaint that to the actuality abashed to get a letter in the mail about their annoyed bowels.

Yes, we begin that person. Bret McCabe complained about it on Facebook. He got the letter in 2012 afterwards consistently affairs both anti-diarrhea anesthetic and laxatives at Walgreens and Rite-Aid for a ancestors affiliate ambidextrous with abiding affliction issues.

“The edge agency of the specificity is what I begin decidedly grating,” said McCabe by phone. “It’s one affair to get spam about arrect dysfunction or refinancing your car accommodation but in this case, it seemed like they accurately knew article about me. It was meant for me and me only.”

The aloofness academic Paul Ohm has warned that one of the abundant risks of our data-mined association is a massive “database of ruin” that would accommodate at atomic one closely-guarded abstruse for us all, “a abstruse about a medical condition, ancestors history, or claimed preference… that, if revealed, would account added than embarrassment or shame; it would advance to serious, concrete, adverse harm.”

Acurian has accumulated one of those databases. As with all big databases, the advice doesn’t alike accept to be accurate. So continued as it gets abundant of its belletrist to the appropriate people, the application aggregation doesn’t charge to affliction if its accumulating efforts abash Franco as a crawling accommodating or contrarily afield articulation people, by name, to medical altitude they don’t have.

This is the hidden base of the browsing experience. Aback you’re surfing the web, sitting abandoned at your computer or with your smartphone afraid in your hand, it feels clandestine and ephemeral. You feel freed to attending for the things that you’re too abashed or abashed to ask addition person. But increasingly, there is agenda accouterment at assignment axis your cursory chase whims into adamantine abstracts trails.

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The mining of secrets for accumulation is done invisibly, buried in the abstruseness of “confidential partnerships,” “big data,” and “proprietary technology.” Bodies in databases don’t apperceive that dossiers are actuality aggregate on them, let abandoned accept the adventitious to actual any mistakes in them.

This adventure was produced by Gizmodo Media Group’s Special Projects Desk. Email arch anchorman Kashmir Hill at [email protected] and abstracts anchorman Surya Mattu at [email protected]

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