Data plays a central role in both medicine and insurance, enabling advances and creating new challenges. Although legislative efforts have attempted to protect the privacy of people’s health data, many other kinds of data can reveal sensitive health information about an individual. People’s medical conditions or health habits can be inferred from many sources, including their purchases, phone call patterns, fitness tracking apps, posts on social media, and browsing histories. Sometimes, medical information that reveals sensitive information about an individual can be linked to the medical state of a relative. However, accuracy of these inferences may be a problem, and inaccurate inference can result in social stigma and harmful reputational effects on the wrongly categorized individual. In addition, the kinds of inferences generated and used by marketers and insurance companies may not be useful when applied to the context of patient care. Not only does misuse of data have consequences for individuals seeking fair access to healthcare, but inappropriate practices also erode productive efforts to use data to empower people, personalize medicine, and develop innovations that can advance healthcare.

This document is a workshop primer from Data & Civil Rights: Why “Big Data” is a Civil Rights Issue.