Some friends recently convinced me to download an app I hadn’t used in nearly a decade: Snapchat. I questioned my decision almost immediately when I saw how closely Snapchat tracked my location. Some of my friends, to their surprise, did not have their location data private. I could see not only the address where they were, but the exact area within the building. I quickly turned off my location data and wondered if I should delete the app until a friend suggested that sharing my location with select people could be beneficial. If we were separated in a crowded place or I went missing, she could see my last location.
The massive amount of data that companies collect — with or without our knowledge — is overwhelming and disconcerting to many. But sometimes we voluntarily provide detailed, personal information to companies. Everyday, hundreds of people spit into a tube, package it in a brown envelope, and ship it to 23andMe to learn about their ancestry and disease risks.
Researchers at 23andMe leverage this data to predict and treat diseases such as COVID-19. They use their massive sequencing datasets to find clinically relevant mutations. For example, they recently surveyed customers who had COVID-19 about their symptom severity and identified a point mutation associated with COVID-19-induced loss of smell.
“These patients are absolutely miserable,” said David Rosen, an otolaryngologist developing treatments for COVID-19 induced smell loss. They can’t smell [or taste] food.”
The new insights garnered by 23andMe researchers could help scientists find new treatments for COVID-19 related loss of smell.
Just like with Snapchat, sharing genomic data comes with risks, and people sometimes hesitate to undergo genetic testing, even in the clinic. While predicting disease based on associated mutations can help drug development and research move forward, it could also cause patients undue stress if they worry about developing life threatening diseases. Although the Genetic Information Nondiscrimination Act passed in 2008 prevents health insurance companies and employers from discriminating against people based on their genetic information, there are no guarantees that other forms of discrimination won’t turn up in the future.
It's important moving forward to ensure that individuals have control over who does and does not see their genetic data — just like their location data — because genetic discrimination is still uncharted territory.