Weighing your options: genetic testing kits and the burden of knowledge

There is a lot to be said about the choice to remain blissfully ignorant, especially in regard to things we cannot change — like genetics. Having watched the science fiction film “Gattaca” on a slow day in my high school biology class with its depictions of a futuristic society driven by genetic discrimination, I am all too aware of the dangers of knowing too much about your genetic profile. So when my parents bought me the 23andMe ‘Health + Ancestry’ kit to find out more about our family’s ancestral background, I felt an unsettling mixture of anticipation and apprehension as I shipped my test tube of spit off to a California lab.

As someone who grew up with no strong ties to any particular ethnic group, I was undeniably excited to find out my “ancestry composition,” as the company’s website puts it. Yet with this information additionally came the “health reports,” complete with carrier status, wellness and traits reports that detail how my genome affects my current and future health. Though 23andMe once included estimations of users’ risk of diabetes, breast cancer and macular degeneration, the MIT Technology Review reports that the Food and Drug Administration banned them in 2013 due to supposed inaccuracies. The health report also excludes many of the diseases I fear the most, such as Alzheimer’s, so my fears essentially boiled down to the carrier status report, which detailed whether I could pass on any of 36 possible inherited diseases to my future children.

It goes without saying that my curiosity trumped my anxiety, and I now can live my life with the knowledge that I am more likely to be a sprinter (which is hilarious to those who know me), less likely to sneeze after eating dark chocolate and more likely to gain weight on a diet high in saturated fat (damn). It was amusing to find out how incorrect my previous ancestral knowledge was as I reflected on all the times I had told people I was mostly Italian, when in reality I was only 0.6 percent. In all, the reports were little more than a momentary amusement as the information provided made no difference to my daily life. But I would be lying if I said I wasn’t nervous when I first opened up those reports with my friends peering over my shoulders.

I received a wide variety of responses from friends regarding the 23andMe test, but the most surprising ones were those underscored by paranoia. Several friends marveled at my audacity in handing over my genome to a random corporation and likely the U.S. government. While I doubt the country will go full on “Gattaca” any time soon, I do understand their hesitation about sharing that information considering its possible use by health insurance agencies and law enforcement. Other friends were opposed to 23andMe’s sale of genetic information to more than 13 drug companies including Pfizer, Genentech and Biogen. For the most part, people don’t like their personal information to be commoditized whether that information takes the form of their genetic makeup or Facebook browsing history.

In the end, I chose to shirk the paranoia and focus on the beneficial impact my genome could have on the scientific community since an average 23andMe customer contributes to more than 230 studies, according to the company’s website. Overall, direct-to-consumer genetic testing is an exciting new frontier with its own novel drawbacks. While genetic tests that reveal more serious health risks require greater consideration of how much we value knowledge for knowledge’s sake, simplified tests can provide limited yet valuable insight. Though the future of this industry is unclear, the notion of jumping the middleman and taking your genetic information into your own hands is an empowering one.

Marisa Papenfuss is a UF English senior. Her column appears on Tuesdays.