Big Data in Genetics

Privacy is just not something to be expected in this day and age of technology and apart from the voluntary use of social media sites and applications that blatantly infringe on this right, people set themselves up for even more invasion when they request their genetic information. Ancestry and family lineage sites for the last few years has been picking up due to shows like “Who Do You Think You Are” and basically any tear-jerking story about long lost siblings who found one another through searching their lineage that you read on your Facebook page every morning. Lately, however, these sites, and not even getting to genetic testing sites like 23andMe, have been asking for more than just a last name and a few answers to personal questions. They have been asking for their customer’s DNA, their genetic data and the repercussions of allowing for a corporation to have the ultimate template and profile of you are greater than you even know. 

It seems harmless enough, just take a swab of your cheek and ship the sample to a company who within two weeks will mail you back a sheet that has your genetic lineage and maybe even a genetic profile to warn you of some genetic disorder you may have. Speaking on a positive note, what could this company have to gain from helping people learn more about their past and their own selves besides doing it from the perspective of a service to others. Well, in fact they have a lot to gain. Since so many people refrain from actually reading the privacy policy before shipping their genetic data through the mail, they do not even realize that they are signing away their right to sole ownership of the data that is collected. Ancestry.com now has the rights to use the data that has been sent their way for their own purposes and if these purposes are to sell the information to the highest bidder, worst case scenario, they have the broad right to do so. Although legally companies such as ancestry.com and Helix do not have the license to sell away your genetic information to third parties, they do reserve the right, without your deliberate permission, or with it following your purchase of the genetic testing kit, to sell it to pharmaceutical and research companies. Now, this already seems like the only boundary these genetic testing sites are crossing is an ethical one where the whole hurt one for the greater good comes into play but when you find out how one of Ancestry’s partnerships is with Calico Labs, which is founded and operated by Google, Inc., you might sing a different tune. With a technology giant such as Google becoming so interested in the health sector of the nation’s economy, certain eyebrows should, and must be, raised before consenting to shipping off DNA that could potentially wind up in the hands to the very people who endlessly track and monitor its users. It is already a breach of rights when a genetic-information-collection company can claim rights to someone’s genetic information but when it can ultimately be shared with a corporation that is not always looking out for the welfare of its users, there needs to be a stop to it.

Before you decide to get your DNA tested for signs of genetic anomalies, keep one thing in mind, scientists are still working, to this day, trying to uncover the complex information of the millions of genes that reside in the human body. We simply do not know enough to give sufficient information to people who are just looking to see if they are carrying a genetic mutation. These tests cannot significantly provide life saving information and as a result, should be used with a grain of salt, or even less than that. Knowing this, as well as the fact that the genetic industry as a whole lacks substantial privacy laws and regulations, there should be more wariness when it comes to giving up your genetic data so easily. It seems unlikely for anyone to give up the password to their email but when shipping their DNA to an unknown lab somewhere in the United States, people do not seem to show the same concern for their privacy. Is this precaution for not sharing DNA samples a little extreme right now, considering how the healthcare and tech industry still cannot utilize genetic information for anything more than research? Perhaps. But, with millions of people having their data breached across the country, by more companies than one, how can we be sure that this genetic information will not be next? People need to expect more from their legislators when it comes to protecting their privacy so whether it be securing the pass-codes on their smartphones or protecting the use of their genetic data, people should care because even though it is not here yet, it is well on its way and preparation for it is vital.

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