About a year ago headlines were swarming with articles about data protection and privacy in regards to genetic testing. Now, these headlines seem so distant and almost even trivial in light of the world-wide COVID-19 pandemic that we are all currently living in.
Genetic testing; especially in the realm of at home genetic testing, has come with it's concern of data privacy. Almost all of the patients I have spoken with have asked some variation of the questions, "What does the lab do with my data? Can they sell my genetic info? Can insurance companies discriminate based on my genetics?".
But now that we are faced with such a massive global health issues, I wonder if large scale genetic databases can actually give us some answers about COVID-19 and whose most at risk. And if so, sign me up to ship off my DNA to help with this effort.
While at first we were told that COVID-19 primarily impacts those over the age of 60 or those with underlying health issues; what we are now seeing is that it's affecting everyone- and at rates much higher than we originally thought. Each day I come across more reports of relatively young adults in great health who shockingly passed away from this disease. So it made me question deeply what potential other factors could be at play. All of us have genetic changes, or variations- and most of the times, these changes don't impact our health or wellbeing. But some of the times, changes in our genes, coupled with changes in our environment (both external and internal cellular environment) can trigger a significant impact. So I wonder if the reason that some seemingly healthy, young individuals who are getting serious complications and passing away from COVID-19 is because they have a certain genetic variant that puts them more at risk whereas others have another variant that makes them more resilient to the disease.
So could labs like 23andMe who harbor millions of genetic sequences potentially use their data to gather information about COVID-19 and genetic risks associated with severe outcomes? A quick google search shows that they have already initiated this efforts by creating a COVID-19 research study as well as several other labs such deCODE Genetics, Rockefeller University, and Ichan School of Medicine at Mount Sinai in NYC. Understanding how genetics impacts COVID-19 not only may give information on severity of disease manifestation, but also inform the biology of the disease which may help with treatment.
As with all things genetics, the big question to ask yourself is - would you want to know. Hypothetically if someone were to give you information on whether you are at high risk for severe symptoms and potentially death from COVID-19 vs lower risk based on your genetics; would you want to know this?
From my experience in exploring genetic testing options with patients, my guess is that the answer is not clear cut. For some, knowing if they are at high risk will propel them take precautionary measures much more seriously, whereas others may find that knowing that they are at a higher risk would add to an already anxious state and potentially do more harm than good. Either way, the recommendation of social distancing and staying home still paramounts any data or research we have to date on genetics and COVID-19, however, I look forward to parsing through the data once it's available.