An Environment For Long-Term Engagement with Personal Genomic Data

Direct to consumer genetic testing has become substantially more accessible to the average person in the last decade, providing those who seek it with a tremendous amount of important and very personal information. Genetic data is a compelling vein of personal informatics for HCI research because, unlike other varieties that sample data at regular intervals, genomic data is only collected once but its interpretation and potential application change over time based on new scientific discoveries. The perception of the data also changes over time based on users’ lifestyle, environment, behavior, and an understanding of family history. Here, we discuss the properties of personal genomic data and propose functional requirements for a platform that allows users to explore raw data while tracking, organizing, and sharing their findings. We then share a preliminary design of a platform that aims to facilitate these functional requirements by providing the user means to document their findings, draw connections, and track their evolving interpretation.