Legal Protection Needed For Our DNA Profiles
August 1st, 2017 by Aldouspi

One of the exciting and mysterious properties of human genetic information is that your DNA doesn’t just store who you are, it stores who you could be. It is more than a simple “fingerprint” that encodes a unique identity, your genome provides a spectrum of probable personal futures, but this knowledge could be used against you.


As individuals, increased knowledge of our genetic makeup has helped us to better understand our heritage and ethnic origins, revealed family members we never knew, and helped personalize medicine. But our genetic identities don’t share the same legal protections as our medical records and there has been a lot of buzz lately about an individual’s right to keep their genetic information to themselves.

Of course, you’d want your doctor to know what diseases you may be at risk for, but what about your insurance company? Giving your health insurance company access to your genetic information could drastically change how much you pay and life insurance companies may just not cover you at all.

Basically, one gene could change the fate of your coverage. In this doomsday scenario, let’s hope you are genetically well suited for a high paying job, because genetic composition could also be used to help determine your eligibility for a job, promotion, or raise.

Think that’s crazy? Genetic traits, such as color blindness and height, are already being used as selection criteria for some jobs, for instance military pilots. So it’s not that much of a stretch to expect that knowledge of traits such as intelligence could mean that one candidate for a promotion or a raise is selected over another based on their genetic potential and not necessarily demonstrated ability. This could also affect private education with things like college acceptance or scholarships.

Consider this: You have a decision making position on a major sports team and it’s draft season. In addition to all of the players’ performance statistics and personal records, you also have their genetic information. You can now see which players have beneficial mutations like the R577X mutation in the ACTN3 gene that helps fast-twitch muscle increase running speed, would you even consider drafting athletes without that mutation? You can see also that this year’s most promising player has a moderate risk factor for cardiac arrhythmia.

Do you draft him, knowing he might have heart problems a few years into his contract? Would this type of knowledge affect the salaries your team would offer?

Giving others access to explicit information about our genetic potential could limit the opportunities they make available to us because they’d know more about whether or not an investment in us is a good bet. In the future, genetic data may influence who we date, who we vote for, or even how we design our genetically modified babies. And refusing to share our information with employers or insurance companies could mean higher costs or penalties for keeping them in the dark.

Currently, there are some government protections designed to mitigate damage resulting from discrimination on the basis of genetic identity or failure to disclose such information, but those protections are far from comprehensive. For instance, the US Genetic Information Nondiscrimination Act (GINA) does not address life insurance, disability insurance, or long-term care insurance, and even though knowledge of what is hidden in your genetic code could have an enormous impact on you and your family, there is currently no federal law preventing the surreptitious testing of your genetic material without your permission.

In this digital age, where companies are profiting from all kinds of our information, data clearly has monetary value. So maybe we should consider protecting and limiting access to our personal data the way we do with our money and financial information. Our genetic code belongs to us and privacy and property rights should be enacted to protect this code.

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