“If iron ore was the raw material that enriched the steel baron Andrew Carnegie in the Industrial Age, personal data is what fuels the barons of the Internet age.” – a line from Somini Sengupta’s article in the Sunday New York Times, “Letting Down Our Guard With Web Privacy.”
I think personal data is fueling health innovation, which is why I hope Sengupta’s article is widely read in the health world. Who are the barons in the new health care enterprise? Who are the serfs? What assumptions are being made and what choices do people have about their health data — and are they aware of them?
In the article, Sengupta profiles Alessandro Acquisti, a behavioral economist who sees himself as an “observer holding up a mirror to the flaws we cannot always see ourselves” (ditto, and in my view, research can also be a window).
What can we learn by looking in Acquisti’s mirror? An excerpt from the article:
Our browsing habits, search terms, e-mail communication — even our offering of our ZIP codes at the supermarket checkout — reveal bits of information that can be assembled by data companies, usually for the purpose of knowing what sorts of products we’re most likely to buy. The online advertising industry insists that the data is scrambled to make it impossible to identify individuals.
Mr. Acquisti offers a sobering counterpoint. In 2011, he took snapshots with a webcam of nearly 100 students on campus. Within minutes, he had identified about one-third of them using facial recognition software. In addition, for about a fourth of the subjects whom he could identify, he found out enough about them on Facebook to guess at least a portion of their Social Security numbers.
The point of the experiment was to show how easy it is to identify people from the rich trail of data they scatter around the Web, including seemingly harmless pictures. Facebook can be especially valuable for identity thieves, particularly when a user’s birth date is visible to the public.
Does that mean Facebook users should lie about their birthdays (and break Facebook’s terms of service)? Mr. Acquisti demurred. He would say only that there are “complex trade-offs” to be made.
Indeed. I have heard about complex trade-offs before — and I bet you have, too.
What would you trade for a chance to discover whether a new drug will work for you or your loved one? What would you trade for a chance to contribute to an experiment that could improve your life? What data would you share for the greater good, even if there was no direct benefit to you?
Use of aggregated — or highly-identifiable, personal — data is not all done with nefarious intent. It can, in fact, be life-saving. But who holds the power when you face those choices? What are the patterns of behavior for the old way of doing things? How can people learn how to contribute in new ways to health research? What would happen if patients were able to fact-check their records and improve the data fueling innovation?
Join me in reading the article and thinking through these issues. Check out additional resources related to the effects of sharing and exposing personal information, curated by William Gunn and others. Please post observations and questions in the comments.