Earlier this year, I took a genetic test to find out more about my ancestry and physical conditions. I have learned more than I expected as I discovered, surprisingly, that I was lactose-intolerant, but more ethnically diverse than I assumed. I also learned about how likely I am to develop certain health conditions. It was amazing for me to realize what a simple sample could tell me about myself.
There are many positives and negatives to knowing this much about one’s genetic information. In April of this year, there were several headlines in major media outlets reporting that the FDA would allow 23andMe, a major genetic testing company, to sell genetic tests for disease risk directly to consumers. According to a New York Times article on April 6, 2017, with FDA approval, the company would be allowed to offer options for customers to test for the hereditary likelihood of developing certain health conditions such as Parkinson’s and Alzheimer’s when they purchase the $199 Ancestry and Health report kit. Now it has become easier for people like me to receive genetic tests to see the potential risk for certain health conditions without having to see a medical professional. While one part of me sees the benefits of such a test, another part of me is wary of the potential downsides of such a practice. These may require us to be more cautious of its use.
Our society has not yet reached the epitome of genetic misuse in that there is a federal law protecting the genetic information of individuals. According to the National Human Genome and Research Institute, there is a federal law called the Genetic Information Nondiscrimination Act of 2008, which intends to protect Americans from being treated unfairly because of differences in their DNA that may affect their health. It aims to protect people from being discriminated by the health insurers and employers for their genetic information. This makes it illegal for insurance companies to require you to take genetic tests, request family medical history or deny your eligibility and premiums for the pre-existing conditions based on hereditary likelihood. The existence of this law indicates that there really are cases where people are treated unfairly for circumstances beyond their control.
There was a case when GINA played a part in helping to protect people with certain genetic conditions or family medical histories from employment discrimination. In 2014, a nursing home was charged for requesting family medical history as part of its post-offer, pre-employment medical exams of applicants. This is one example of how the act protected people from being abused for their hereditary conditions, and very much proves that there needs to be a baseline protection for people as genetic testing becomes more of a marketable information rather than secretive personal data.
But what concerned me most as I read the headlines of allowing the genetic testing industries to be more marketable and commercial was that about a month ago there was a bill introduced in the House of Representatives that would potentially weaken the power of protection imposed by the GINA law. An article in March 2017 by The New York Times reported that the Preserving Employee Wellness Programs Act, introduced by U.S. Rep. Virginia Foxx, R-N.C., would allow employers to access the personal medical and genetic information of employees and raise financial penalties for those who opt out of workplace wellness programs. This means that companies can force their employees to undergo health screenings or genetic tests, which could contain information about not only themselves, but also their families and children. Letting employers have access to such sensitive information and enforcing financial penalties would naturally push people to take these tests against their will, hardly making it an option. This bill is under review by the House Committee and has not yet been considered by the Senate, but the mere introduction of such a bill and the FDA’s choice to allow genetic testing to be a viable consumer choice may make genetic-based discrimination a reality.
However good-intentioned this bill may have been is a question for later discussion. As of now, the increasing accessibility of genetic testing for both public and private sectors and the fact that there is a bill to make the genetic information of individuals public is a frightening prospect. I don’t neglect the obvious benefit of widespread genetic testing, but as someone who received worrying test results, I am concerned that I may one day fall victim to such discrimination. Many things hidden in private are publicized for the sake of protection and regulation, but this trend seriously limits personal freedom, a constitutional ideal of this country, and makes me wonder if it’s worth the risk. We all are different, and if society cannot embrace such diversity, then there is a no reason to call such an institution democratic. Allowing genetic testing to be more marketable is not a thing that I deny to be beneficial, but I want it to be protected from public misuse. I believe we have a right to know a lot of things, but the liberty of knowledge should not be turned into a freedom to oppress us.
Hae Rin is a junior majoring in history. How do you feel about the spread of genetic testing? Please send all comments, questions and concerns to opinion@dailycardinal.com.
