Big data and artificial intelligence are growing more pervasive and are creating new, complex links between individuals and the many groups to which they might belong, including groups no one might have thought of as a “group” before. How should we think about questions of group privacy, discrimination, and group identity in this new world? Does it matter whether algorithms used in health care focus on identified groups that have been designated as protected classes, rather than more precisely (or amorphously) defined groups that may or may not align with some protected class boundaries?
This interview guide seeks to understand the experiences of those who publicly shared their direct-to-consumer genetic testing results on the online platform openSNP.