Designing a gender-affirming genetic testing experience
Democratizing access to precision healthcare for gender non-conforming individuals.
Background
Color is a data-driven health service powered by genetics. Color provides clinical care, so we are required to collect specific information about participants for medical purposes. One piece of information we are required to collect is an individual’s sex assigned at birth.
We use this data to:
Identify risk for genetic disease
Share screening guidelines
Suggest appropriate health resources
There are two places in our product where we collect an individual’s sex assigned at birth:
When a participant activates their Color genetic test kit
OR at the start of health history (participants can add their health history before they receive their kit).
So what’s the problem?
If a user’s self-reported sex does not match their sample’s observed sex chromosome count, it triggers an investigation.
There are a handful of reasons that explain a mismatch, one of which is when an individual’s sex assigned at birth is different than their gender identity.
This creates issues in reporting for these individuals, so Color returns an “Instant Report” that does not contain risk information or screening guidelines. Without risk information or screening guidelines, reports are virtually meaningless, and individuals in this situation do not have access to personal risk information and screening guidelines.
Understanding the complexity
I worked with cross-functional partners at Color to answer the following questions…
Medicine and research: How do we return accurate and actionable information? How do we work within the limitations around research for transgender and non-binary individuals?
Language: How do we collect accurate information while being sensitive towards all users? What is the most up-to-date terminology?
Data: How do we collect only what we need for accurate reporting?
Engineering constraints: Reports are complex! How can we work within Color’s existing system?
How did we solve this?
Improved content design – clarifying that we are asking for sex assigned at birth for quality control purposes – allowed us to address this problem without a massive (and unfeasible) engineering overhaul.
By updating language (changing “sex” to “sex assigned at birth”), adding a new field for gender identity (which allows us to provide an experience across the rest of the site catered to gender non-conforming individuals), and working within our existing reports structure & note system, we were able to build and release this update in one week.
These seemingly small changes have large implications for democratizing access to precision healthcare.
Ongoing work
As Color expanded into other health areas, including diagnostics and immunizations, reporting requirements began to shift.
In collaboration with the Scientific and Medical Affairs teams, I designed a unified system for collecting sensitive information about “sex assigned at birth” that met the varying regulatory, clinical, legal, and contractual requirements of our many healthcare products. Most importantly, it helped participants feel seen and understood.
This content design system to improve parity for transgender patients across all of Color’s healthcare products. I also created internal documentation for teams across Color, as well as training materials for providers, clinicians, and other staff at Color’s nationwide healthcare sites. This easy-to-follow system helped teams move faster while ensuring thoughtful care experiences for patients.