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Privacy rhetoric often focuses on the individual (Solove 2008). Computer systems are designed to give individuals control over their “personal” data while legal narratives often speak of individual harm and informed consent by individuals. Models that go beyond the individual often focus on groups (e.g., access- control lists that support bounded entities) or articulated lists of others (e.g., “joint rights” models that focus on multiple defined entities). But what are the implications of privacy in a networked world where boundaries aren’t so coherently defined and when entities aren’t so easily articulated?
Curious about what secrets might be hidden in my DNA, I decided to spit in a tube and turn my DNA over to the genetic testing service 23andMe. What came back was fascinating: hints that my ancestors might have origins that differ from the family narrative, and disease probabilities that suggest that family medical stories are either inaccurate or statistically curious. Through this test, I learned information about myself, but I also learned information about members of my family. Furthermore, by choosing to subject my DNA to this testing process, I didn’t just reveal data about myself; I gave away data that provides insights into my mother, brother, grandparents, and even children that I don’t yet have. I never asked my future grandchildren for permission to offer their data to a scientific database. I made a decision about the privacy of my data that affects numerous people who are implicated but who have no say. And, in doing so, I learned information about them that they may not wish to know, let alone have me know.
Our data—and with it, our privacy—is increasingly networked. What we share about ourselves tells heaps about other people. Sometimes, as with DNA data, we’re linked by immutable factors. In other situations, the connection is social or locational. I can’t even count the number of photos that were taken by strangers with me in the background at the Taj Mahal. And my friends often post photos of me with them without asking my permission. Yet, there’s also a third layer of connection. Our data also provides a probabilistic image of who we are based on comparisons to other people.