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Ethical Violation In Genetic Research

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Although this technology may seem like science fiction, the consequences it can bring, most specifically surrounding privacy and ownership, can be overwhelming. Genetic information is different than any other type of information because it is biologically unique. John Quackenbush, a Harvard professor of computational biology and bioinformatics, explains: “As soon as you touch genomic data, that information is fundamentally identifiable...I can erase your address and Social Security number and every other identifier, but I can’t anonymize your genome without wiping out the information that I need to analyze” (Shaw). As the use of big data continues to expand, so does the risk of security for an individual’s genome. An important aspect of genetic …show more content…

In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA), which “protects Americans from being treated unfairly because of differences in their DNA that may affect their health” (NIH). When people discover that they are more at risk for a genetic disease, potential employers or insurance companies are forbidden to use this information against them. Consequently, people are not as hesitant to perform genetic testing or participate in research because the information they gain cannot be used at their disadvantage. Additionally, genotyping companies such as 23andMe have clear, publicly available privacy statements that participants are free to read before they agree to send in their DNA. They assure potential consumers that “personal information and genetic data are stored in physically separate computing environments” and “software, hardware and physical security measures [are used] to protect the computers where customer data is stored” (23andMe). Even though genetic data cannot be fully anonymized, measures are being taken to promote the security of an individual’s personal

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