Far too often, when writers try and define risks from privacy, they talk about the dangers of information being used by “advertisers.” To be clear, this is a risk, but it’s a pretty small part of the actual risk.
The data industry wants us to focus on the narrow sphere of advertising because that lets other industries that are comparably destructive and less visible off the hook. A more complete definition (which, for the sake of brevity, is an oversimplification) of the risks associated with companies violating our privacy as a normal part of how they do business includes how companies create profiles about people using data from a range of sources, and how these profiles are then used to invisibly shape decisions about us, without our knowledge or consent or any real checks on accuracy or fairness.
Advertising is one of the use cases that accesses a data profile, but many other major sectors use automated decision making supported by various types of data profiles – from banking to insurance to hiring to policing to mortgage lending to sentencing, to name a few. Unauthorized data collection by bad actors exposes people seeking healthcare to greater risk.
Privacy is complicated
The problems start with data collection.
Automated tracking amplifies the problem.
Data augmentation, where data from multiple sources are combined and cross-referenced, makes the problem even worse.
Data sharing, via sales, affiliate relationships, or other means, spreads the problem broadly.
Data retention ensures that the problem persists indefinitely.
No real limits on secondary or tertiary uses of data, paired with a lack of any review or consent allows companies to act with impunity.
Advertising is one of many industries that benefit from the status quo, but when we limit our discussions around privacy to advertising, we are having the conversation industry wants us to have.
Image credit: https://www.reddit.com/r/privacymemes/comments/twv541/companies_be_like/