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Harvard Professor Re-Identifies Anonymous Volunteers In DNA Study – Forbes


One of the major criticisms against the Article 29 working party, was that they did not anticipate how easy it was to identify the living person, with a mere handful of anonymous datasets.  Here is another warning.

Given a few datasets – they know who you are.  The answer is to anonymise your data, and prevent links to your living ID (ie using a mobile phone to answer security questions). Surveillance studies NEEDS to link datasets to your ID.

A Harvard professor has re-identified the names of more than 40% of a sample of anonymous participants in a high-profile DNA study, highlighting the dangers that ever greater amounts of personal data available in the Internet era could unravel personal secrets.

From the onset, the Personal Genome Project, set up by Harvard Medical School Professor of Genetics George Church, has warned participants of the risk that someone someday could identify them, meaning anyone could look up the intimate medical histories that many have posted along with their genome data. That day arrived on Thursday.

Of the 1,130 volunteers Sweeney and her team reviewed, about 579 provided zip code, date of birth and gender, the three key pieces of information she needs to identify anonymous people combined with information from voter rolls or other public records. Of these, Sweeney succeeded in naming 241, or 42% of the total. The Personal Genome Project confirmed that 97% of the names matched those in its database if nicknames and first name variations were included. She describes her findings here.

Sweeney has also set up a web page for anyone to test how unique their birthdate, gender and zip are in combination. When I tried it, I was the only match in my zip code, suggesting that I, like so many others, would be easy to re-identify. “This allows us to show the vulnerabilities and to show that they can be identified by name,” she said. “Vulnerabilities exist but there are solutions too.”

Volunteer Lenore Snyder, however, said that she did not want to be identified and as a result did not provide her zip code and some other identifying characteristics in her profile. She said her genetic testing suggests she has an intellectual disability, even though she is a molecular biologist with a PhD. “People don’t know how to interpret this,” she said. “It’s dangerous. A little bit of information is dangerous.”

Sweeney’s latest findings build on a 1997 study she did that showed she could identify up to 87% of the U.S. population with just zip code, birthdate and gender.  She was also able to identify then Massachusetts Gov. William Weld from anonymous hospital discharge records.

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