Faculty Bibliography

BACKGROUND:In recent years, people who sought direct-to-consumer genetic testing services have been increasingly confronted with an unprecedented amount of personal genomic information, which influences their decisions, emotional state, and well-being. However, these users of direct-to-consumer genetic services, who vary in their education and interests, frequently have little relevant experience or tools for understanding, reasoning about, and interacting with their personal genomic data. Online interactive techniques can play a central role in making personal genomic data useful for these users. OBJECTIVE:We sought to (1) identify the needs of diverse users as they make sense of their personal genomic data, (2) consequently develop effective interactive visualizations of genomic trait data to address these users' needs, and (3) evaluate the effectiveness of the developed visualizations in facilitating comprehension. METHODS:The first two user studies, conducted with 63 volunteers in the Personal Genome Project and with 36 personal genomic users who participated in a design workshop, respectively, employed surveys and interviews to identify the needs and expectations of diverse users. Building on the two initial studies, the third study was conducted with 730 Amazon Mechanical Turk users and employed a controlled experimental design to examine the effectiveness of different design interventions on user comprehension. RESULTS:The first two studies identified searching, comparing, sharing, and organizing data as fundamental to users' understanding of personal genomic data. The third study demonstrated that interactive and visual design interventions could improve the understandability of personal genomic reports for consumers. In particular, results showed that a new interactive bubble chart visualization designed for the study resulted in the highest comprehension scores, as well as the highest perceived comprehension scores. These scores were significantly higher than scores received using the industry standard tabular reports currently used for communicating personal genomic information. CONCLUSIONS:Drawing on multiple research methods and populations, the findings of the studies reported in this paper offer deep understanding of users' needs and practices, and demonstrate that interactive online design interventions can improve the understandability of personal genomic reports for consumers. We discuss implications for designers and researchers.

Patient motivation is an important factor to consider when developing rehabilitation programs. Here, we explore the effectiveness of active participation in web-based citizen science activities as a means of increasing participant engagement in rehabilitation exercises, through the use of a low-cost haptic joystick interfaced with a laptop computer. Using the joystick, patients navigate a virtual environment representing the site of a citizen science project situated in a polluted canal. Participants are tasked with following a path on a laptop screen representing the canal. The experiment consists of two conditions: in one condition, a citizen science component where participants classify images from the canal is included; and in the other, the citizen science component is absent. Both conditions are tested on a group of young patients undergoing rehabilitation treatments and a group of healthy subjects. A survey administered at the end of both tasks reveals that participants prefer performing the scientific task, and are more likely to choose to repeat it, even at the cost of increasing the time of their rehabilitation exercise. Furthermore, performance indices based on data collected from the joystick indicate significant differences in the trajectories created by patients and healthy subjects, suggesting that the low-cost device can be used in a rehabilitation setting for gauging patient recovery.