More than a decade ago, the scientific community completed what was once deemed an impossible task: researchers from around the world finally decoded the entire sequence of the human genome. With this accomplishment, the “cost of sequencing dropped dramatically – from $3 billion for the first human genome to [just] a few thousand dollars today” (Wojcicki, “Know Your Genome: What We Can All Gain from Personal Genetics”). Although the plummeting numbers on these DNA price tags may not mean much to the general public, the implications of this breakthrough are life-changing. Indeed, the most recent advances in genetic research have just made it possible to answer the question “who are you?” in the most definitive way possible – a person’s past, present, and even future all available at our fingertips. Furthermore, with this data, leaps and bounds can be made to cure disease, eliminate crime, and even pave the way for improvements in the way we live, the likes of which the world has only ever seen in science fiction. But what does this all mean for the concept of identity? Can the genetic information that is extracted and analyzed really define who someone is as a person? Not as a biological being, but as an individual? This very dilemma is one of the most debated issues of the 21st century, and as the world moves ever further into the future, this question will no doubt become more and more prevalent. Thus, it is vitally important to understand how and why the use of genetic information can be both a blessing and a curse, and more importantly, what society should do when confronted with such deeply ethical matters.
“With great power comes great responsibility.” Even though Uncle Ben may not have intended for his famous line to become the principle behind genetic research, it definitely reflects many of the ethical concerns regarding this new technology. DNA databases, government genomic records, and public access registries to sensitive genetic information are all growing in number in an effort to crack down on criminals and develop new treatments for disease. However, what may be just as terrifying as a bloodthirsty serial killer or a growing tumor, is the fact that authorities can abuse the power of “DNA to accumulate information on people’s racial origins, medical history, and [even] psychological profile” (Lawless, “Spread of DNA Databases Sparks Ethical Concerns”). With this kind of data, what’s stopping the public from discriminating against each other on the basis of genetics? What’s preventing health insurance organizations from withdrawing their services due to an unfortunate medical history? And most of all, what’s prohibiting society from defining who and how someone should be through inferences made through their genetic identity? These fears have become so great and so pertinent that laws have already been passed in an attempt to address foreseeable, future issues. According to the Genetic Information Nondiscrimination Act of 2008 or GINA, “it is illegal to discriminate against employees or applicants because of genetic information” (“Genetic Information Discrimination”). Nevertheless, this doesn’t solve everything. No matter how many steps are taken to mitigate these controversies, they very much still exist, and will continue to further down the road. In the end, as troubling as any type of privacy breach may sound, the truth of the matter remains the following: the ethical concerns surrounding the use of genetic information is only one side of a double edged sword. The real question is, which edge is sharper?
Although the privacy concerns associated with genetics are no doubt problematic, few can deny the revolutionary benefits that come about from this new technology. Not only does the use of DNA allow for a more effective means of apprehending criminals, but more importantly, it also clears the name of many innocent suspects, suspects who would have been punished irreversibly for crimes they never committed (Lawless, “Spread of DNA Databases Sparks Ethical Concerns”). In fact, since the advent of DNA testing in criminal investigations, “there have been 321 post-conviction DNA exonerations in [just] the United States,” as shown below, and this growing number only scratches the surface of how much forensics practice has aided Interpol internationally” (Massie, “DNA Exonerations Nationwide”).
However, as impressive as these accomplishments may be, where genetics research has made the most impact is in today’s medical field. Hundreds upon thousands of people in society have depended on genetic information to screen and diagnose for diseases in their imminent future, and many more are seeking cures to current disorders through gene therapy as well. Among those who can and are currently benefitting from genetics are individuals living with cystic fibrosis, breast cancer, Parkinson’s, diabetes, and even heart disease, but there’s more. By evaluating how patients react to certain drugs, genetic research can “help them prevent harmful side effects…and [even] potentially avoid preventable deaths” (Wojcicki, “Know Your Genome: What We Can All Gain from Personal Genetics”). In the end, there are hardly any other alternatives that can offer as much to the world as genetics do, but will the advantages truly outweigh the disadvantages? Does knowing that the cure for cancer may be waiting to be discovered in the human genome make up for the threats to privacy and personal security? According to some of the world’s most renowned media sources, it seems genetics may just be the more popular choice. But should it be?
In order to assess general knowledge regarding genetics research, an online survey accompanying a short informational passage will be distributed to a selection of students that attend Harvard University. Data collection at Harvard is advantageous both because of ease of access as well as the assumption that the general populace at a university of higher learning is more aware of such controversial issues. Surveys will include questions regarding student opinions on whether genetics should be actively pursued and whether there should be greater limits prevent the abuse of genetic information, etc. Ultimately, this information will be analyzed to formulate an estimation of where the future of genetics may lie, and hopefully provide an accurate representation of public knowledge and opinion.
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