There has been considerable debate about the ethical, privacy, and civil liberty issues surrounding the unauthorized or unknowing retention and use of babies’ blood samples for purposes other than disease-screening in the United States and abroad. Often, parents are not told of the possible lengthy data retention period, possible distribution to other agencies, and possible other purposes for which their children’s blood samples could be used. Now, WNCN in North Carolina looks at the situation, and what it finds shows there are also questions about de-identification or “anonymization” of newborns’ medical data.
Asked what the government plans to do with the data, Scott Zimmerman, director of the N.C. State Public Health Lab, said, “So if an outside agency such as an academic institution approaches us and asks for dried blood spots, there are two approaches that can be taken. One, we can get parental consent to release that dried blood sample to an outside entity. We will not release any DBS that contains patient information without parental consent.”
Zimmerman added, “The only other way DBS are released is if they are de-identified.”
Researchers have shown that, often, data that has been de-identified can be re-identified (or “de-anonymized”), and sensitive data could be linked back to an individual. Therefore, there is a significant privacy concern for individuals’ whose information is shared, without their consent, in this manner.
One of the most-publicized examples of reidentification of anonymized data occurred in 2006 with the publication of search records of 658,000 Americans by AOL demonstrated that the storage of a number as opposed to a name or address does not necessarily mean that search data cannot be linked back to an individual. Though the search logs released by AOL had been anonymized, identifying the user by only a number, New York Times reporters were quickly able to match some user numbers with the correct individuals. User No. 4417749 “conducted hundreds of searches over a three-month period on topics ranging from ‘numb fingers’ to ‘60 single men’ to ‘dog that urinates on everything.’” A short investigation led Times reporters to “Thelma Arnold, a 62-year-old widow who lives in Lilburn, Ga.” and has three dogs.
But there’s a more recent example, too. In October, researchers at Neustar Research delved into the “anonymized” NYC taxicab dataset and were able to re-identify passengers and their destinations, including customers of strip clubs. “To reiterate: the findings in this section were not hard to uncover. Equipped with this dataset, and just a little auxiliary information about you, it would be quite trivial for someone to follow your movements, collecting data on your whereabouts and habits, while you remain blissfully unaware. A stalker could find out where you live and work. Your partner may spy on you. A thief could work out when you’re away from home, based on your habits. There are obvious mitigating factors here, such as the population density of Manhattan and the time delay of the data release, but the point still stands,” they said.