Data re-identification or de-anonymization is the practice of matching anonymous data (also known as de-identified data) with publicly available information, or auxiliary data, in order to discover the person to whom the data belongs.
This is a concern because companies with
privacy policies, health care providers, and financial institutions may release the data they collect after the data has gone through the de-identification process.
The de-identification process involves masking, generalizing or deleting both direct and indirect
identifier
An identifier is a name that identifies (that is, labels the identity of) either a unique object or a unique ''class'' of objects, where the "object" or class may be an idea, person, physical countable object (or class thereof), or physical mass ...
s; the definition of this process is not universal. Information in the
public domain
The public domain (PD) consists of all the creative work to which no Exclusive exclusive intellectual property rights apply. Those rights may have expired, been forfeited, expressly Waiver, waived, or may be inapplicable. Because no one holds ...
, even seemingly anonymized, may thus be re-identified in combination with other pieces of available data and basic computer science techniques. The Protection of Human Subjects ('
Common Rule
The Common Rule is a 1991 rule of ethics in the United States regarding biomedical and behavioral research involving human subjects. A significant revision became effective July 2018. It governed Institutional Review Boards for oversight of human ...
'), a collection of multiple U.S. federal agencies and departments including the
U.S. Department of Health and Human Services, warn that re-identification is becoming gradually easier because of "
big data
Big data primarily refers to data sets that are too large or complex to be dealt with by traditional data processing, data-processing application software, software. Data with many entries (rows) offer greater statistical power, while data with ...
"—the abundance and constant collection and analysis of information along with the evolution of technologies and the advances of algorithms. However, others have claimed that de-identification is a safe and effective data liberation tool and do not view re-identification as a concern.
More and more data are becoming publicly available over the Internet. These data are released after applying some anonymization techniques like removing personally identifiable information (PII) such as names, addresses and social security numbers to ensure the sources' privacy. This assurance of privacy allows the government to legally share limited data sets with third parties without requiring written permission. Such data has proved to be very valuable for researchers, particularly in health care.
GDPR-compliant pseudonymization seeks to reduce the risk of re-identification through the use of separately kept "additional information". The approach is based on an expert evaluation of a dataset to designate some identifiers as "direct" and some as "indirect." Proponents of this approach argue that re-identification can be avoided by limiting access to "additional information" that is kept separately by the controller. The theory is that access to separately kept "additional information" is required for re-identification, attribution of data to a specific data subject can be limited by the controller to support lawful purposes only. This approach is controversial, as it fails if there are additional datasets that can be used for re-identification. Such additional datasets may be unknown to those certifying the GDPR-compliant pseudonymization, or may not at exist at the time of the pseudonymization but may come into existence at some point in the future.
Legal protections of data in the United States
Existing privacy regulations typically protect information that has been modified, so that the data is deemed anonymized, or de-identified. For financial information, the
Federal Trade Commission
The Federal Trade Commission (FTC) is an independent agency of the United States government whose principal mission is the enforcement of civil (non-criminal) United States antitrust law, antitrust law and the promotion of consumer protection. It ...
permits its circulation if it is de-identified and aggregated.
The
Gramm Leach Bliley Act (GLBA), which mandates financial institutions give consumers the opportunity to
opt out
The term opt-out refers to several methods by which individuals can avoid receiving unsolicited product or service information. This option is usually associated with direct marketing campaigns such as e-mail marketing or direct mail. A list of th ...
of having their information shared with third parties, does not cover de-identified data if the information is aggregate and does not contain personal identifiers, since this data is not treated as
personally identifiable information
Personal data, also known as personal information or personally identifiable information (PII), is any information related to an identifiable person.
The abbreviation PII is widely used in the United States, but the phrase it abbreviates has fou ...
.
Educational records
In terms of university records, authorities both on the state and federal level have shown an awareness about issues of
privacy in education
Privacy in education refers to the broad area of ideologies, practices, and legislation that involve the privacy rights of individuals in the education system. Concepts that are commonly associated with privacy in education include the expectation ...
and a distaste for institutions' disclosure of information. The
U.S. Department of Education
The United States Department of Education is a United States Cabinet, cabinet-level department of the federal government of the United States, United States government, originating in 1980. The department began operating on May 4, 1980, havin ...
has provided guidance about data discourse and identification, instructing educational institutions to be sensitive to the risk of re-identification of anonymous data by cross-referencing with auxiliary data, to minimize the amount of data in the public domain by decreasing publication of directory information about students and institutional personnel, and to be consistent in the processes of de-identification.
Medical records
Medical information of patients are becoming increasingly available on the Internet, on free and publicly accessing platforms such as
HealthData.gov and
PatientsLikeMe
PatientsLikeMe (PLM) is an integrated community, health management, and real-world data platform. The platform currently has over 830,000 members who are dealing with more than 2,900 conditions, such as ALS, MS, and epilepsy. Data generated by p ...
, encouraged by government
open data
Open data are data that are openly accessible, exploitable, editable and shareable by anyone for any purpose. Open data are generally licensed under an open license.
The goals of the open data movement are similar to those of other "open(-so ...
policies and
data sharing
Data sharing is the practice of making data used for scholarly research available to other investigators. Many funding agencies, institutions, and publication venues have policies regarding data sharing because transparency and openness are consid ...
initiatives spearheaded by the private sector. While this level of accessibility yields many benefits, concerns regarding
discrimination
Discrimination is the process of making unfair or prejudicial distinctions between people based on the groups, classes, or other categories to which they belong or are perceived to belong, such as race, gender, age, class, religion, or sex ...
and privacy have been raised. Protections on
medical records
The terms medical record, health record and medical chart are used somewhat interchangeably to describe the systematic documentation of a single patient's medical history and care across time within one particular health care provider's jurisdict ...
and consumer data from
pharmacies
Pharmacy is the science and practice of discovering, producing, preparing, dispensing, reviewing and monitoring medications, aiming to ensure the safe, effective, and affordable use of medication, medicines. It is a miscellaneous science as it ...
are stronger compared to those for other kinds of consumer data. The
Health Insurance Portability and Accountability Act
The Health Insurance Portability and Accountability Act of 1996 (HIPAA or the Ted Kennedy, Kennedy–Nancy Kassebaum, Kassebaum Act) is a United States Act of Congress enacted by the 104th United States Congress and signed into law by President ...
(HIPAA) protects the privacy of identifiable data about health, but authorize information release to third parties if de-identified. In addition, it mandates that patients receive breach notifications should there be more than a low probability that the patient's information was inappropriately disclosed or utilized without sufficient mitigation of the harm to him or her. The likelihood of re-identification is a factor in determining the probability that the patient's information has been compromised. Commonly, pharmacies sell de-identified information to
data mining
Data mining is the process of extracting and finding patterns in massive data sets involving methods at the intersection of machine learning, statistics, and database systems. Data mining is an interdisciplinary subfield of computer science and ...
companies that sell to pharmaceutical companies in turn.
There have been state laws enacted to ban data mining of medical information, but they were struck down by federal courts in Maine and New Hampshire on First Amendment grounds. Another federal court on another case used "illusive" to describe concerns about privacy of patients and did not recognize the risks of re-identification.
Biospecimen
The Notice of Proposed Rule Making, published by the
Common Rule Agencies in September 2015, expanded the umbrella term of "human subject" in research to include
biospecimens, or materials taken from the human body - blood, urine, tissue etc. This mandates that researchers using biospecimens must follow the stricter requirements of doing research with human subjects. The rationale for this is the increased risk of re-identification of biospecimen.
The final revisions affirmed this regulation.
Re-identification efforts
There have been a sizable amount of successful attempts of re-identification in different fields. Even if it is not easy for a lay person to break anonymity, once the steps to do so are disclosed and learnt, there is no need for higher level knowledge to access information in a
database
In computing, a database is an organized collection of data or a type of data store based on the use of a database management system (DBMS), the software that interacts with end users, applications, and the database itself to capture and a ...
. Sometimes, technical expertise is not even needed if a population has a unique combination of identifiers.
Health records
In the mid-1990s, a government agency in
Massachusetts
Massachusetts ( ; ), officially the Commonwealth of Massachusetts, is a U.S. state, state in the New England region of the Northeastern United States. It borders the Atlantic Ocean and the Gulf of Maine to its east, Connecticut and Rhode ...
called Group Insurance Commission (GIC), which purchased health insurance for employees of the state, decided to release records of hospital visits to any researcher who requested the data, at no cost. GIC assured that the patient's privacy was not a concern since it had removed identifiers such as name, addresses, social security numbers. However, information such as zip codes, birth date and sex remained untouched. The GIC assurance was reinforced by the then governor of Massachusetts, William Weld.
Latanya Sweeney
Latanya Arvette Sweeney is an American computer scientist. She is the Daniel Paul Professor of the Practice of Government and Technology at the Harvard Kennedy School and in the Harvard Faculty of Arts and Sciences at Harvard University. She is th ...
, a graduate student at the time, put her mind to picking out the governor's records in the GIC data. By combining the GIC data with the voter database of the city Cambridge, which she purchased for 20 dollars, Governor Weld's record was discovered with ease.
In 1997, a researcher successfully de-anonymized medical records using voter databases.
In 2011, Professor Latanya Sweeney again used anonymized hospital visit records and voting records in the state of Washington and successfully matched individual persons 43% of the time.
There are existing algorithms used to re-identify patient with prescription drug information.
Consumer habits and practices
Two researchers at the
University of Texas
The University of Texas at Austin (UT Austin, UT, or Texas) is a public research university in Austin, Texas, United States. Founded in 1883, it is the flagship institution of the University of Texas System. With 53,082 students as of fall 2 ...
,
Arvind Narayanan
Arvind Narayanan is a computer scientist and a professor at Princeton University. Narayanan is recognized for his research in the de-anonymization of data. He is currently the director of Princeton University, Princeton's Center for Information ...
and Professor Vitaly Shmatikov, were able to re-identify some portion of anonymized Netflix movie-ranking data with individual consumers on the streaming website. The data was released by Netflix 2006 after de-identification, which consisted of replacing individual names with random numbers and moving around personal details. The two researchers de-anonymized some of the data by comparing it with non-anonymous IMDb (Internet Movie Database) users' movie ratings. Very little information from the database, it was found, was needed to identify the subscriber.
In the resulting research paper, there were startling revelations of how easy it is to re-identify Netflix users. For example, simply knowing data about only two movies a user has reviewed, including the precise rating and the date of rating give or take three days allows for 68% re-identification success.
In 2006, after
AOL published its users' search queries, data that was anonymized prior to the public release, ''
The New York Times
''The New York Times'' (''NYT'') is an American daily newspaper based in New York City. ''The New York Times'' covers domestic, national, and international news, and publishes opinion pieces, investigative reports, and reviews. As one of ...
'' reporters successfully carried out re-identification of individuals by taking groups of searches made by anonymized users.
AOL had attempted to suppress identifying information, including usernames and IP addresses, but had replaced these with unique identification numbers to preserve the utility of this data for researchers. Bloggers, after the release, pored over the data, either trying to identify specific users with this content, or to point out entertaining, depressing, or shocking search queries, examples of which include "how to kill you wife", "depression and medical leave", "car crash photos." Two reporters,
Michael Barbaro and Tom Zeller, were able to track down a 62 year old widow named Thelma Arnold from recognizing clues to the identity of User 417729 search histories. Arnold acknowledged that she was the author of the searches, confirming that re-identification is possible.
Location data
Location data - series of geographical positions in time that describe a person's whereabouts and movements - is a class of personal data that is specifically hard to keep anonymous. Location shows recurring visits to frequently attended places of everyday life such as home, workplace, shopping, healthcare or specific spare-time patterns. Only removing a person's identity from location data will not remove identifiable patterns such as commuting rhythms, sleeping places, or work places. By mapping coordinates onto addresses, location data is easily re-identified or correlated with a person's private life contexts. Streams of location information play an important role in the reconstruction of personal identifiers from smartphone data accessed by apps.
Court decisions
In 2019, Professo
Kerstin Noëlle Vokingerand Dr. Urs Jakob Mühlematter, two researchers at the
University of Zurich
The University of Zurich (UZH, ) is a public university, public research university in Zurich, Switzerland. It is the largest university in Switzerland, with its 28,000 enrolled students. It was founded in 1833 from the existing colleges of the ...
, analyzed cases of the
Federal Supreme Court of Switzerland
The Federal Supreme Court of Switzerland ( ; ; ; ; sometimes the Swiss Federal Tribunal) is the supreme court of the Swiss Confederation and the head of the Swiss judiciary.
The Federal Supreme Court is headquartered in the Federal Courth ...
to assess which pharmaceutical companies and which medical drugs were involved in legal actions against the
Federal Office of Public Health (FOPH) regarding pricing decisions of medical drugs. In general, involved private parties (such as pharmaceutical companies) and information that would reveal the private party (for example, drug names) are anonymized in Swiss judgments. The researchers were able to re-identify 84% of the relevant anonymized cases of the
Federal Supreme Court of Switzerland
The Federal Supreme Court of Switzerland ( ; ; ; ; sometimes the Swiss Federal Tribunal) is the supreme court of the Swiss Confederation and the head of the Swiss judiciary.
The Federal Supreme Court is headquartered in the Federal Courth ...
by linking information from publicly accessible databases. This achievement was covered by the media and started a debate if and how court cases should be anonymized.
Concern and consequences
In 1997,
Latanya Sweeney
Latanya Arvette Sweeney is an American computer scientist. She is the Daniel Paul Professor of the Practice of Government and Technology at the Harvard Kennedy School and in the Harvard Faculty of Arts and Sciences at Harvard University. She is th ...
found from a study of Census records that up to 87 percent of the U.S. population can be identified using a combination of their 5-digit
zip code, gender, and date of birth.
Unauthorized re-identification on the basis of such combinations does not require access to separately kept "additional information" that is under the control of the data controller, as is now required for GDPR-compliant pseudonymization.
Individuals whose data is re-identified are also at risk of having their information, with their identity attached to it, sold to organizations they do not want possessing private information about their finances, health or preferences. The release of this data may cause anxiety, shame or embarrassment. Once an individual's privacy has been breached as a result of re-identification, future breaches become much easier: once a link is made between one piece of data and a person's real identity, any association between the data and an anonymous identity breaks the anonymity of the person.
Re-identification may expose companies and institutions which have pledged to assure anonymity to increased
tort
A tort is a civil wrong, other than breach of contract, that causes a claimant to suffer loss or harm, resulting in legal liability for the person who commits the tortious act. Tort law can be contrasted with criminal law, which deals with cri ...
liability and cause them to violate their internal policies, public privacy policies, and state and federal laws, such as laws concerning financial confidentiality or
medical privacy, by having released information to third parties that can identify users after re-identification.
Remedies
To address the risks of re-identification, several proposals have been suggested:
* Higher standards and uniform definition of de-identification while retaining data utility: the definition of de-identification should balance privacy protections to reduce re-identification risk with the refusal of companies to delete data
* Heightened privacy protections of anonymized information
* Tighter security for databases that store anonymized information
* Strong ban on malicious re-identification, the passing of broader anti-discrimination and privacy legislation that ensures privacy protections as well as encourage participation in data sharing projects and endeavors, as well as establishment of uniform data protection standards in academic communities, such as in the scientific community, in order to minimize privacy violations
* Creation of data-release policies: making sure de-identification rhetoric is accurate, drawing up contracts that prohibit re-identification attempts and dissemination of sensitive information, establishing data enclaves, and utilizing data-based strategies to match required protection standards to the level of risk.
* Implementation of
Differential Privacy
Differential privacy (DP) is a mathematically rigorous framework for releasing statistical information about datasets while protecting the privacy of individual data subjects. It enables a data holder to share aggregate patterns of the group while ...
on requested data sets
* Generation of
Synthetic Data
Synthetic data are artificially generated rather than produced by real-world events. Typically created using algorithms, synthetic data can be deployed to validate mathematical models and to train machine learning models.
Data generated by a comp ...
that exhibits the statistical properties of the raw data, without allowing real individuals to be identified
While a complete ban on re-identification has been urged, enforcement would be difficult. There are, however, ways for lawmakers to combat and punish re-identification efforts, if and when they are exposed: pair a ban with harsher penalties and stronger enforcement by the
Federal Trade Commission
The Federal Trade Commission (FTC) is an independent agency of the United States government whose principal mission is the enforcement of civil (non-criminal) United States antitrust law, antitrust law and the promotion of consumer protection. It ...
and the
Federal Bureau of Investigation
The Federal Bureau of Investigation (FBI) is the domestic Intelligence agency, intelligence and Security agency, security service of the United States and Federal law enforcement in the United States, its principal federal law enforcement ag ...
; grant victims of re-identification a right of action against those who re-identify them; and mandate software audit trails for people who utilize and analyze anonymized data. A small-scale re-identification ban may also be imposed on trusted recipients of particular databases, such as government data miners or researchers. This ban would be much easier to enforce and may discourage re-identification.
Examples of de-anonymization
* "Researchers at
MIT
The Massachusetts Institute of Technology (MIT) is a private research university in Cambridge, Massachusetts, United States. Established in 1861, MIT has played a significant role in the development of many areas of modern technology and sc ...
and the
Université catholique de Louvain
UCLouvain (or Université catholique de Louvain , French for Catholic University of Louvain, officially in English the University of Louvain) is Belgium's largest French-speaking university and one of the oldest in Europe (originally establishe ...
, in Belgium, analyzed data on 1.5 million cellphone users in a small European country over a span of 15 months and found that just four points of reference, with fairly low spatial and temporal resolution, was enough to uniquely identify 95 percent of them. In other words, to extract the complete location information for a single person from an "anonymized" data set of more than a million people, all you would need to do is place him or her within a couple of hundred yards of a cellphone transmitter, sometime over the course of an hour, four times in one year. A few Twitter posts would probably provide all the information you needed, if they contained specific information about the person's whereabouts."
* "Here, we report that surnames can be recovered from personal genomes by profiling short tandem repeats on the Y chromosome (Y-STRs) and querying recreational genetic genealogy databases. We show that a combination of a surname with other types of metadata, such as age and state, can be used to triangulate the identity of the target."
See also
References
{{reflist
Anonymity
Information governance
Internet privacy
Privacy