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D Greenbaum & M Gerstein (2013). "Your DNA vulnerable to snooping, too?", "USA Today", July 27, Opinion
Link to original article: http://www.usatoday.com/story/opinion/2013/06/27/dov-greenbaum-and-mark-gerstein-on-nsa-and-genetics/2465589
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Your DNA vulnerable to snooping, too?
Dov Greenbaum, and Mark Gerstein 5:46 p.m. EDT June 27, 2013
The science-fiction imagery of 1984 or Minority Report comes to mind amid the unprecedented revelations describing the National Security Agency's sweeping surveillance programs to data mine personal information on people in the U.S. and snoop on our allies.
Imagine combining these dystopian realities with Gattaca, where in addition to trawling our personal communications, the government mines our genomes as well.
An international consortium of genomic researchers across 41 countries potentially moved us a step closer to such a reality when it announced this month a new data-sharing agreement for the expected deluge of human genomes to be sequenced in the near future as the cost falls to levels of an MRI.
In one sense, this agreement is highly beneficial. Large genomic databases are integral to mapping and shedding light on the genetic basis of disease and for developing drugs.
Science vs. social media
Moreover, it's worth noting that Big Brother and Big Genomics aren't the only ones collecting Big Data on you. Retailers analyze consumer shopping habits to the extent that they can often predict a pregnancy, and researchers have been able to determine probable gender, ethnicity, religion and other personal information from just your likes on Facebook.
Further, the younger generation has already made it socially acceptable to embrace information-sharing technology. With the torrent of real-time data gushing from our smartphones, the concept of privacy is still evolving and raises the question of whether the information available to researchers mining DNA databases will be any more personal, revealing or detrimental than what we already disclose unwittingly through social media.
Perhaps. Cables uncovered by WikiLeaks already suggest that Big Brother's intrusive interests extend past compiling electronic communications and include exploring DNA of foreign diplomats. Unchecked, a number of troubling scenarios could result from a government with access to vast genomic databases.
For example, just as spymasters now use the "data exhaust" from our cellphone and e-mail traffic to track targeted individuals, they could in the future use DNA from bits of shed hair and skin to follow someone's movements.
Moreover, analyzing a small segment of someone's DNA could be used to disclose medical conditions or to plant incriminating synthesized DNA at a crime scene ? both blackmail scenarios.
Finally, there is the future potential of a biological weapon designed to target a particular group or even an individual based on unique genetic variants.
DNA research benefits, too
These potential abuses notwithstanding, just as we acquiesce to the cataloging of our data by large corporations in exchange for fast Internet searches or grudgingly submit ourselves to being watched by the NSA in the hopes of preventing terrorism, we should promote vast collections of DNA as powerful tools to combat disease.
Mining large DNA databases has uncovered genes associated with numerous diseases, including macular degeneration and diabetes, and it has enabled targeted treatments for cancer patients.
Now, the public needs to be reassured not only that threats of government exploitation are held in check, but also that the more pedestrian concerns of leaks to employers, insurance providers, or even friends are prevented.
How? Technological solutions alone are unlikely to work, and private databases have become increasingly vulnerable to hackers. Better is a hybrid social-and-technological approach. Codes of conduct, regulatory oversight and punitive threats typically keep data-mining financial organizations in line.
Oversight by a non-governmental agency could similarly protect our genomic data. Additionally, professional licensing, and requiring continuing bioethical and computer security education, could function on a more individual level.
Science fiction movies were entertaining because of their futuristic imagery and seemingly implausible story lines. But as the NSA snooping scandal and the advances in genomics have shown, science is no longer just fiction.
