Presented by: Dr. Michael Ann DeVito & Dr. Ada Lerner
Background
Many of our own experiences as trans people, as well as research shared at the Trans Studies Conference, highlighting two critical facts: the lack of formal, comprehensive evidence surrounding trans health and trading information in built spaces.
This gap not only denies us essential medications and procedures but also fosters internal conflict within the community. For novice trans individuals seeking guidance, the absence of reliable sources often results in confusion, discouragement, and even harm. This issue represents a form of hermeneutical injustice, where trans people are denied the language and resources needed to understand and advocate for themselves in a medical system that is often hostile. In addition, trans researchers face structural barriers that exacerbate these challenges, making it difficult to address this problem formally.
Challenges
Trans people have been resilient in creating informal networks for knowledge-sharing. However, these platforms—often Discord servers or peer-to-peer spaces—are targeted for takedowns or moderated heavily, particularly concerning crucial DIY health information. Hostile actors can also disrupt these spaces, weakening the flow of knowledge. More alarmingly, even when this folk knowledge survives, it is not taken seriously in formal medical contexts.
Proposal
We propose Secure Citizen Science—a collaborative effort to formalize and protect the folk knowledge that already circulates within trans communities. This initiative will securely collect, aggregate, and distribute existing trans-specific knowledge in a way that preserves its richness while ensuring it is backed by scalable, reliable data.
How to Get Involved
This is not a task computer science alone can solve. To create a robust, secure, and comprehensive data pipeline, we need interdisciplinary collaboration:
- Medical and public health researchers to help determine the most important data to collect and safeguard participants’ mental health.
- Legal and policy experts to protect data beyond just technical solutions.
- Cultural scholars to ensure inclusivity and relevance across diverse trans communities.
- Users for the pipeline who will use the platform and contribute their knowledge.
This is an open invitation to join us in building a resource that will help trans people advocate for themselves in the healthcare system. Whether you are a researcher, policy advocate, or community member, your input and collaboration are crucial.