Despite the belief that de-identified data do not pose much risk to patients, data science has demonstrated that "de-identified" data reuse is not so safe.
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Businesses using de-identified data should not be given 'carte blanche.
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" Earlier this year, the EPA agreed to examine a "de-identified dataset.
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Who gets to see your de-identified (not attached to your name) information?
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It is selling de-identified, aggregate data for research, if you give them consent.
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That data was "de-identified," meaning it was not linked to people by name.
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For example, research using de-identified data in a clinical setting may not require participants' consent.
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The data may be de-identified, but in the grand scheme of things, this is irrelevant.
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"For this reason, we only start with data that has been de-identified," Bowden wrote Thursday.
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Our foundation finds that patients are eager to participate in responsible sharing of appropriately de-identified data.
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They'll usually say something like: We don't sell your data to third-parties unless it's de-identified.
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"It doesn't need to be de-identified on our end because it's already intrinsically separate," says Quinn.
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Researchers working at the Scripps Research Translational Institute reviewed de-identified data from users wearing Fitbits -- the company's privacy policy allows for the potential use of de-identified user data for research -- and found that they were able to do real-time flu prediction at the state level.
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We intend to make the de-identified data available to qualified investigators around the world for research purposes.
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The data that is being tracked here is completely de-identified so we don't know who tracks what.
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An Optum spokesman said the socioeconomic data is de-identified and is not used for pricing health plans.
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In some cases, Dr. Hazel said, companies use what's called "de-identified aggregate data," which is relatively safe.
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But a new study suggests hackers may be able to match "de-identified" health information to patient identities.
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Most DNA testing companies allow for de-identified genetic information to be shared with other companies, researchers, and databases.
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A final weakness is that HIPAA doesn't actually prevent hospitals from selling your health information if it's been de-identified.
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Of course, the data is aggregated and de-identified, and the partner organizations must "respect our privacy standards," Jackman wrote.
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The companies are also making sure that the data is de-identified so it isn't tied to a specific individual.
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They've planted a flag for data scientists to find answers in two million de-identified patient claims data records on Kaggle.
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This data will be de-identified, the company claims, and much of it will be made available to residents and planners.
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Instead, I spent my first year of graduate school in front of a computer screen with de-identified subject identification numbers.
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Instead it's just "de-identified," which means it's stored by Facebook but no longer tied to the user who created it.
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"Apple agrees that companies should share de-identified scenario and dynamics data from crashes and near-misses," Kenner writes in the letter.
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" The company also noted it would use "de-identified medical records" from Chicago that would be "stripped of any personally identifiable information.
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Any data that companies collect must be immediately classified as either PII or de-identified and assigned the correct level of protection.
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According to the company, the usage data it collects on its users is de-identified and is not stored with their names.
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Facebook insists that the data used for its Disease Prevention Maps is anonymized, relying only on data that's de-identified and aggregated.
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Also, committee records and reports are de-identified — stripped of any information that might point to a particular woman, caregiver or hospital.
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Under the Common Rule and the HIPAA Privacy Rule, a laboratory can, without asking people, also release their data in de-identified form.
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The de-identified data will remain as a resource to the company for a long-term period, hopefully spurring ongoing research and development.
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The majority of apps installed on a phone will be collecting data about its usage and sending it back, de-identified, for analysis.
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All the information is de-identified, but it enables the agency to proactively identify trends and risks in the system before something happens.
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But DNA data that is unique is arguably not capable of being fully de-identified and would still be personally identifiable, Hepp said.
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Amazon's Alexa apps, increasingly leveraging artificial intelligence technology, may be compliant with HIPAA, but even de-identified data may still identify individual patients.
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Emerging from stealth today, RDMD aggregates and analyzes medical records and sells the de-identified data to pharmaceutical companies to help them develop medicines.
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"Niantic does not and has no plans to sell Pokémon Go user data — aggregated, de-identified or otherwise — to any third party," Power wrote.
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Leading genealogy company Ancestry said customer privacy was its highest priority, and said it de-identified, encrypted and segmented data into separate storage platforms.
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For the breast cancer study, Google partnered with clinical researchers in the US and UK, and used data that had already been de-identified.
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You should definitely think about it because when the information is your own DNA, there really is no such thing as "de-identified" data.
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Big collections of aggregate and/or "de-identified" data will certainly be sold to the highest bidder for targeting advertising and who knows what else.
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As long as your specimens are "de-identified" — meaning your name and other personal information are no longer attached to them anymore — they're fair game.
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"We urge the Commission to resist some parties' request for the creation of a special carve-out for 'de-identified' customer information," the groups said.
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The researchers cite data broker Experian selling Alteryx access to a de-identified data set containing 248 attributes per household for 120 million Americans, for example.
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Vendors, including Axon, should design ALPRs to facilitate transparency about their use, including by incorporating easy ways for agencies to share aggregate and de-identified data.
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"It is often trivial to re-identify data that has supposedly been de-identified," they said in the latest salvo in the battle over the rules.
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In 2019, the news broke that some Google employees had access to Ascension patients' private health information, as well as vast datasets of de-identified data.
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Dr. Elliott Haut worries that studies like this one will spark fears in the public, which might call for cessation of research using de-identified data.
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What tech companies can do with de-identified data exposes gaps in data privacy that grow wider with every Google search and Facebook post, she says.
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For its part, Sleepio says it does not share personally identifiable data with employers, although it does share aggregated, de-identified data about employees on the whole.
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In June 2019, the University of Chicago Medical Center and Google were sued for allegedly violating HIPAA regulations by sharing patient records that weren't de-identified properly.
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But even the U.S. Department of Health and Human Services warned that there's a risk that de-identified data could be linked back to the corresponding patient.
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Once this data is processed for its express purpose (ie: to make the app work), it's de-identified in our systems and not associated with your account.
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Earlier this year, researchers in Europe published a method they claim was able to correctly identify 99.98% of Americans in de-identified datasets using 15 demographic attributes.
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De-identified health data may also reside in the technical infrastructure of partners of the Baseline project, if they have successfully passed a vendor security audit by Verily.
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Yet patients may not fully understand the risks, including how de-identified data might be used for additional, for-profit uses, or be untraceably transferred to third parties.
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With the consent of 1,500 patient and control volunteers, our Parkinson's Progression Markers Initiative study makes all de-identified data available to the research community in real time.
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Bowden tried to quell privacy worries Thursday in a blog post, emphasizing that the data has been "de-identified," meaning that an individual's location data would be identifiable.
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"The data is fully de-identified and aggregated and cannot be used to personally identify or target you," Avast told users, who opt in to the data sharing.
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The advertiser provides a hashed list of individuals — meaning that they are de-identified and the platform has no visibility into who is on the list or why.
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These maps compile de-identified data about the distribution of relief supplies and response efforts, allowing response teams to identify what services are needed in a given community.
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It allows employers to request the information so long as it is provided in a de-identified, aggregated form and is "voluntary"—for instance, in an employee wellness programs.
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For their study in JAMA Internal Medicine, the team used de-identified death certificates and federal census data to create annual estimates of life expectancy from 1980 to 2014.
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For their study in JAMA Internal Medicine, the team used de-identified death certificates and federal census data to create annual estimates of life expectancy from 1980 to 2014.
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To ensure this, the hospital will only make de-identified data accessible to Google inside the Mayo-controlled private cloud, where it has the ability to monitor any activity.
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"I felt I had no choice because I had been told by Sidewalk Labs that all of the data collected will be de-identified at source," she told Global News.
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On the other hand, if a malicious attacker were to get ahold of the de-identified database and re-identify the data, the cybercriminals would gain an extremely valuable loot.
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While the EPA has argued that patient data can be de-identified, studies have shown that sometimes patients' identities can be discerned from the information that is included, Salas said.
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Nevertheless — and this should be underlined twice — the intent seems to be to ensure that the collection, use, retention, sale, or disclosure of de-identified information should not be restricted.
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First, bulk, de-identified data is used to train those algorithms so they learn, for example, that a credit score of 450 corresponds to a 20 percent higher risk of death.
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In addition, any genetic information can be provided to the employer only in a de-identified, aggregated form, rather than in a way that reveals which individual has which genetic profile.
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The company noted that data for location density and movement maps would draw on de-identified data obtained through location sharing that users opt into when they download Facebook's mobile application.
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While the data in the test case was fairly innocuous - just the output of movement trackers like Fitbit - it suggests that de-identified data may not be so anonymous after all.
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This summer they added a "sponsored sequencing" model, which offers customers a free clinical-grade genome if they let Nebula share their de-identified DNA and other data with pharmaceutical partners.
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But the company's policies also show that Amazon uses customer data to improve or validate features in Rekognition — so it is possible that engineers could have access to clients' de-identified metadata.
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Joel Dudley's team at Mt. Sinai in New York developed a system known as Deep Patient, scouring de-identified health data across the hospital system and combining information in multitudes of ways.
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The nature of the study, which involves de-identified data and confidential surveys, should also mean that no one can figure out the identity of a volunteer or their stated sexual orientation.
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For starters, researchers have shown that de-identified data does not always stay that way, as it's possible to cross-reference information from multiple datasets to associate a person with particular information.
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The findings in the new report titled "The Opioid Crisis in America's Workforce" were based on de-identified data covering nearly one million workers who used Castlight's benefit platform between 2011 and 2015.
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This de-identified medical record was then given to Google, and Dinerstein claims he never gave any type of consent to either the tech giant or the University to disclose such personal information.
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"But these companies also use what's called de-identified individual-level data, where there is, you know, always a risk that a person can be re-identified from that data," Dr. Hazel said.
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Here's what I think: We know that Facebook in the past few years has hired a few health experts to approach hospitals to work on medical applications, which involve sharing de-identified data.
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The consumer DNA testing company 23andMe gave drug company GlaxoSmithKline access to de-identified data from millions of customers who probably thought their DNA was only being used to discover their ancestral homelands.
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How and why Oculus collects this movement data in the first place was also addressed, with the company stressing that this data is now de-identified and can not be associated with user accounts.
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And while the medical records were allegedly provided to the tech company "de-identified," Google has powerful tools that would enable it to piece its troves of data together to ultimately identify anonymized information.
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By leveraging data, including de-identified healthcare data from individual companies, algorithms designed to identify patterns of opioid side effects can provide early indications of dependency and unnecessary cost within an organization's healthcare network.
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In July, 23andMe also announced it had entered into a four-year partnership with pharmaceutical giant GlaxoSmithKline to potentially develop new drugs and treatments, which will include the sharing of anonymized, de-identified customer DNA.
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In the U.S. we briefed the CDC on the work we do with aggregate, de-identified data maps with researchers — which has been previously reported — and they were supportive of our doing more of it.
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"LADOT will ensure the data is de-identified in accordance with established data protection methodologies before any Dockless Mobility data begins to be published to the City of Los Angeles Open Data Portal," they wrote.
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Called disaster maps, the resource uses "aggregated, de-identified" Facebook data to provide key information organizations said would be most helpful in improving how they respond and provide relief in the immediate hours after a crisis.
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The medical center allegedly de-identified the dataset, but still gave Google records with the patient's height, weight, vital signs, information on diseases they have, medical procedures they've undergone, medications they are on, and date stamps.
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And while this data is said to be made completely anonymous and de-identified, the authors found that certain companies were given enough data to easily piece together the identity of users if they wanted to.
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We must develop an ethical framework for the use and sharing of data centered on four pillars: To preserve privacy, no individual data — even "de-identified" data — should be transferred without full audit and perpetual provenance.
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One of them, the so-called "safe harbor" method, specifies that "all elements of dates," should not be shared, in order for a company to claim that the patient health information data is, in fact, de-identified.
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Facebook already provides de-identified aggregate data for free through its Data for Good program that, among other things, offers Disease Prevention Maps, which sound very similar to what the Post says the government is considering using.
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We also follow and adhere to applicable laws and industry guidance regarding the use of consumer data, including the newly enacted California Consumer Protection Act (CCPA), which further outlines processes and procedures for handling de-identified data.
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"Forcing these companies to clarify their consent forms and requiring them to obtain written authorization for any genetic data disclosure, including de-identified data, will reassure California consumers that their most personal information is safe," noted Senator Umberg.
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Last month, for example, 23andMe announced a partnership with GlaxoSmithKline that gives the pharmaceutical giant access to "de-identified" genetic data from the roughly 80 percent of 23andMe users who permit their information to be used for drug research.
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That said, it is possible to identify a specific person even from such "anonymized" data points, which is why many privacy advocates prefer using the term "de-identified" data rather than "anonymized," reasoning that nothing is ever truly anonymous.
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PST: A Microsoft spokesperson responded with the following statement: We review short snippets of de-identified voice data from a small percentage of customers to help improve voice-enabled features, and we sometimes engage partner companies in this work.
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Verana has inked data collection deals with the American Academy of Ophthalmology and the American Academy of Neurology to create large pools of de-identified patient data that can be used for drug discovery, population health analysis and medical research.
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The researchers used de-identified claims data from insurers representing 22012 million patients, looking for diagnosis codes related to opioid dependency and abuse, adverse effects of heroin use, and problems caused by the misuse or abuse of other types of opiates.
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How they did it: The researchers used de-identified death records from the National Center for Health Statistics (NCHS) and U.S. Census Bureau population data to determine mortality rates from lower respiratory infections, diarrheal diseases, HIV/AIDS, meningitis, hepatitis, and tuberculosis.
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For instance, three amendment bills — AB 873, 874, and 1355 (which the California Legislature passed) — all had in their intent to clarify that de-identified data is excluded from the definition of personal information, and thus the scope of the CCPA.
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What they did: Using de-identified data from Aetna insurance (which didn't fund the study), the team from Harvard Medical School and Australia's University of Queensland examined records from nearly 234 million Americans, including more than 248,23 twin pairs and 218,53 sibling pairs.
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Bose has denied the allegations and pointed to the privacy policy in the Connect App that is explicit about the fact that it collects de-identified data for Bose's use only and does not sell identified data for any purpose including "behavioral advertising".
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If GSK can combine the genetic data of 23andMe's users with de-identified or summary-level medical info, it could go a long way toward ensuring 23andMe's pharma partners have fewer costly flops and can bring more successful new drugs to market.
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"If your genome is out in a public database, then it is technically reasonable to re-ID you," said Erlich, who, with colleagues, published a paper in which "de-identified" genetic information was re-identified through cross-references to publicly available information.
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To get to the root of this issue, we examined the account data from more than 450,000 de-identified Chase mortgage customers who received a mortgage modification, including some who received assistance through various modification programs, between July 2009 and June 85033.
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Above all: why was the information being handed over in a form that had not been "de-identified" – the term the industry uses for removing all personal details so that a patient's medical record could not be directly linked back to them?
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The complaint describes how Google could, in theory, completely legally receive de-identified medical records and then combine them with its vast stores of data about how people behave online—including geolocation, search queries, and social media posts—to re-identify individuals.
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Finally, they show that, third, even if population uniqueness is low—an argument often used to justify that data are sufficiently de-identified to be considered anonymous —, many individuals are still at risk of being successfully re-identified by an attacker using our model.
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The cameras that the airline uses are configured so they do not have the ability to save an image, the company said, and simply capture a traveler's photo, which is then encrypted and transmitted in a "de-identified" format, and sent to CBP for verification.
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The consumer DNA testing company 23andMe gave drug company GlaxoSmithKline access to de-identified data from millions of customers who probably thought their DNA was only being used to discover their ancestral homelands (customers have to opt in to be included in research programs).
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Facebook's "Data for Good" program uses de-identified aggregate data from its users to power its Disease Prevention Maps, which can give insights into where people live and where they move that may help health organizations track the spread of diseases or predict where they'll hit next.
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The 2012 FTC safeguard recommends three steps for de-identification: (1) takes reasonable measures to ensure that the data is de-identified; (85033) publicly commits not to try to re-identify the data; and (3) contractually prohibits downstream recipients from trying to re-identify the data.
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"The study shows that machine learning can successfully re-identify the de-identified physical activity data of a large percentage of individuals, and this indicates that our current practices for de-identifying physical activity data are insufficient for privacy," said study coauthor Anil Aswani of the University of California, Berkeley.
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The main source of confusion Confusion mainly comes from the fact that while the CCPA does provide a clear exclusion for "publicly available" data, it is more ambiguous when it comes to de-identified or in the aggregate consumer information (compare section 2628(o)(28503) with section 22019.(a)(5)).
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Saskatchewan and Ontario officials say data in the RTD (sometimes called the "Hub database" in Saskatchewan) is "de-identified" by removing details such as people's names and birthdates, though experts Motherboard spoke to said that scrubbing data so it may never be used to identify an individual is difficult if not impossible.
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In the FTC's press release today, the regulator called on some of the largest ISPs like AT&T, Verizon, T-Mobile, Xfinity, and Google Fiber to provide information into what kind of data is collected, why it's collected, whether this data is shared with third parties, de-identified, and the procedures allowing consumers to make changes or delete their personal information.
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Unacast's marketing materials show how specific this data can get: And this very granular data is how Unacast can tell how well people are distancing themselves from each other: In order to deduce how people's travel patterns have changed, it has to know what those patterns were in the first place, all the way down to the de-identified individual data point.
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Sidewalk is also aware of the privacy concerns that could arise from having the trash monitored by its portfolio company, so in concert with the city, the company created a Responsible Data Use Assessment process and is assuring residents that any data collected will be de-identified and aggregated and only focus on the types of waste that's being thrown out.
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Taking on digital ad space sold by Google and Facebook means leveling the playing field, and part of determining that real-world ad's ROI can mean relying on the same creepy ad analytics services that connect web habits and location data of de-identified devices for serving online ads — but such are the ills of the advertising world in 2020.
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" According to the definition adopted by the city, a technology has surveillance capability if it can be used "to collect, capture, transmit, or record data that could be used to surveil, regardless of whether the data is obscured, de-identified, or anonymized before or after collection and regardless of whether technology might be used to obscure or prevent the capturing of certain views or types of information.
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