Ethical, Legal, and Social Implications of Deep Phenotyping Research

Psychiatry has long needed a better and scalable way to capture the dynamics of behavior and its disturbances. By combining 24/7 data on location, movement, email and text communications, social media, with brain scans, genetics/genomics, neuropsychological batteries, and clinical interviews, researchers will have an unprecedented amount of objective, individual-level data.

Yet the road to this innovative future is fraught with ethical dilemmas. Although it is true that the deeper you go, the more you know—it is unclear when a researcher knows enough to justify sharing data with a clinician, alerting appropriate individuals about potential self-harm, and returning individual research results. To guide these ethics considerations, we have developed a new instrument, an Ethics Checklist for Deep Phenotyping Research. The DP Ethics Checklist is  sub-divided into six key (and interrelated) domains: