No abstract

BackgroundIn 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.ObjectiveWe 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.MethodsThe 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.ResultsThe 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.ConclusionsDrawing 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.

The social stigma looming over disclosures of sexual violence discourages many women from publicly sharing their stories, limiting their ability to seek support and obscuring the epidemic of sexual violence against women. By inviting women to share their ordinarily silenced stories, the hashtag #MeToo surfaced a network of survivors to confront this stigma. Through a mixed-methods analysis of over 1.5 million tweets posted during the first two weeks after #MeToo gained widespread popularity in 2017, we map the landscape of disclosures that emerged and disentangle the effects of network-level reciprocal disclosures, or disclosures made in reaction to seeing others disclose. We detail how survivors disclosed a diversity of sexual violence experiences in solidarity with others, composing nearly half of all authored tweets and comprising a disproportionate number of interactions within the #MeToo network. Further, we show that the more disclosures an individual potentially saw prior to disclosing, the more likely they were to share details with their disclosure. We argue that such network-level reciprocal disclosures may have reduced stigma, creating a counterpublic space safe for disclosure which, subsequently, generated more disclosures. Our work illustrates how feminist hashtag activism, like #MeToo, can unify individual and collective narratives to dismantle the stigma surrounding disclosures of sexual violence. Content warning: This article heavily discusses issues of sexual violence against women.

The social stigma looming over disclosures of sexual violence discourages many women from publicly sharing their stories, limiting their ability to seek support and obscuring the epidemic of sexual violence against women. By inviting women to share their ordinarily silenced stories, the hashtag #MeToo surfaced a network of survivors to confront this stigma. Through a mixed-methods analysis of over 1.8 million tweets posted during the first two weeks after #MeToo gained widespread popularity in 2017, we map the landscape of disclosures that emerged and disentangle the effects of network-level reciprocal disclosures, or disclosures made in reaction to seeing others disclose. We detail how survivors disclosed a diversity of sexual violence experiences in solidarity with others, composing nearly half of all authored tweets and comprising a disproportionate number of interactions within the #MeToo network. Further, we show that the more disclosures an individual potentially saw prior to disclosing, the more likely they were to share details with their disclosure. We argue that such network-level reciprocal disclosures may have reduced stigma, creating a counterpublic space safe for disclosure which, subsequently, generated more disclosures. Our work illustrates how feminist hashtag activism, like #MeToo, can unify individual and collective narratives to dismantle the stigma surrounding disclosures of sexual violence. Content warning: This article heavily discusses issues of sexual violence against women.

Culturally informed design for virtual agents has been shown to positively impact health outcomes when tailored to target audiences. We present a participatory design methodology for culturally tailoring virtual agents. Investigators worked with key informants from our target population, members of predominantly Black church communities, to design culturally-relevant and sensitive virtual agent health promotion interventions. In the first participatory session, key informants designed agents to assist them with different aspects of their lives, providing input on agent appearance and agent functionality. In a second design session, participants rewrote the content of a health conversation with an agent, to include personally-relevant content related to their community (e.g., religious and scriptural references). We report design principles for religious tailoring derived from these studies. We conducted a validation study to assess the effects of applying these principles to agents that promoted two health behaviors, finding that participants responded very positively to the tailored agents. CCS CONCEPTS • Human-centered computing → Participatory design; User studies; • Computing methodologies → Intelligent agents.