Sharing Women's Health Experiences Influenced by Genetic Factors: Practices, Challenges, and Opportunities

Genetics play a significant role in women's health, with family members often experiencing shared symptoms or hereditary risks. HCI has explored how digital tools like medical records, tracking apps, and online communities can support documenting and sharing of health information and management of health conditions. However, little is known about what and how these health experiences are communicated within families, especially when influenced by genetic factors. We therefore conducted a survey with 249 adult women in the U.S. to understand how they share genetic factors relating to women's health with family members. Our findings show that participants value health history and lived experiences, but gaps in time and space, stigma, and family tensions hinder the sharing of details and sensitive topics across generations and larger families. We discuss opportunities for designing tools that promote genetic health sharing, address stigma, and enable intergenerational sharing and tracking.

• Human-centered computing → Empirical studies in HCI; • Applied computing → Health informatics.