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

Paper Title

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

Publication Info

• Topic area: Family communication and technology design for sharing genetic health information, particularly in women’s health.
• Keywords: Women’s health, genetic factors, family communication, health technology, stigma, intergenerational sharing, health documentation, collaborative tracking, sociotechnical systems, privacy.

Background and Problem

• Problem / challenge: Existing health technologies and research have largely overlooked how genetic factors influence women’s health and how families communicate these experiences. There is limited understanding of the practices, challenges, and opportunities in sharing genetic health information within families.
• Significance: Understanding and sharing genetic health experiences can help women better manage their health and prepare for future health stages. Addressing gaps in communication could improve health literacy and outcomes across generations.
• Motivation and related work: Prior work in HCI has explored health tracking tools, online communities, and family informatics, but these have focused on individual health or single conditions rather than shared genetic experiences. Research on women’s health has highlighted stigma and cultural barriers, but not in the context of family communication about genetics. This study addresses these gaps by examining how families share women’s health experiences shaped by genetic factors.

Solution

• Proposed approach: A mixed-method survey of 249 adult women in the U.S. to investigate practices, challenges, and opportunities in sharing genetic health experiences related to women’s health within families.
• Novelty:
  1. Empirical insights into what and how families share genetic health experiences related to women’s health.
  2. Identification of challenges and gaps in family communication, including stigma, time/space gaps, and generational dynamics.
  3. Recommendations for designing health technologies to support intergenerational sharing, documentation, and preservation of genetic health information.
• Procedure and key techniques:
  • Survey design included demographic questions, knowledge and sharing practices, and use of health technologies.
  • Participants rated their knowledge of genetic health and described their experiences in open-ended questions.
  • Data analysis combined quantitative description and qualitative thematic analysis to identify patterns and themes.

Results

• Concrete findings:
  • 75.9% of participants learned about menstruation from family, while 62.7% learned about pregnancy and fertility. Menopause and chronic conditions were less commonly discussed.
  • Sharing often occurred during family gatherings or life-stage transitions (e.g., menarche, pregnancy).
  • Barriers included lack of awareness (only 44.2% felt knowledgeable about genetic health), physical separation, time gaps, and stigma (cultural, generational, and gendered).
• Advantage over baselines: Highlights the importance of genetic health as a shared family resource, reframing health information beyond individual use. Identifies specific sociotechnical barriers and opportunities for technology to address them.
• Experiments / evaluation:
  • Survey of 249 women stratified by age to reflect U.S. demographics.
  • Quantitative analysis of sharing patterns and qualitative coding of open-ended responses.
  • Findings validated through iterative team discussions and thematic refinement.
• Limitations and future work:
  • Sample overrepresented white and highly educated participants, limiting generalizability to minority and lower-education groups.
  • Focused on U.S. families; future work could explore cultural differences in other countries.
  • Limited representation of gender minorities and non-cisgender women.
  • Future work could develop and test specific technologies for intergenerational sharing and address privacy concerns.

Summary

This study investigates how families share women’s health experiences influenced by genetic factors, identifying both practices and barriers. Findings reveal that while families value sharing genetic health information, gaps in awareness, physical distance, time, and stigma hinder effective communication. The study recommends health technologies that integrate genetic information, facilitate intergenerational tracking, and address stigma through design artifacts and privacy-sensitive features. These insights have implications for designing sociotechnical systems that support collaborative, long-term documentation and sharing of genetic health information within families.