For all the potential benefits, the incorporation of people’s health data into algorithmic “black boxes” could harm science and exacerbate inequalities, warn some researchers.
“When it comes to control over our own data, health data must be where we draw the line,” John Wilbanks and Eric Topol stress.
Cryptic digital profiling is already shaping society; for example, online adverts are tailored to people’s age, location, spending and browsing habits.
Wilbanks and Topol envision a future in which “companies are able to trade people’s disease profiles, unbeknown to them” and where “health decisions are abstruse and difficult to challenge, and advances in understanding are used to aggressively market health-related services to people — regardless of whether those services actually benefit their health.”
The duo call for a campaigning movement similar to the environmental one to break open how people’s data are being used, and to illuminate how such information could be used in the future. In their view, “the creation of credible competitors that are open source is the most promising way to regulate” corporations that have come to “resemble small nations in their own right”.
What do you guys think? Is this something you are concerned about? Is this just paranoid fear-mongering and the benefits outweigh the negatives? Let us know in the comments!
[Nature]