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. Read more »