I’ve been working on privacy since 1991. I guess when one has been engaged with a subject deeply, one escapes the bubble effect: that of believing that one particular issue/value is paramount. But I interact with many people now, who seem to think that privacy is a paramount value even if some of the “safeguards” they want to put in place would basically make it impossible to use big data for the public good.
Humans understand through analogical reasoning. So perhaps understanding about what we want to do with big data for the public good can be understood by this analogy with medical research using leftover materials from medical procedures?
First, no one is taking biospecimens from patients’ bodies without their permission. Patients have consented to the clinical procedure as important to their medical care. What harm could come from using leftover materials, which would otherwise be thrown away, for research?
Perhaps we should be concerned about risks to a patient’s privacy, but that is why we remove the identifying information. Although researchers have shown that it is possible to “de-anonymize” specimens — using clues to link them back to individuals — there have been no reports of anyone doing this for nefarious reasons. And even if there were, the answer would be to sanction the culprit through fines or criminal charges, not to make it harder for researchers to get these samples in the first place.