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Genetic Testing Raises Privacy Concerns

by Bill Barton

DNA testing, once an expensive technology, is now so inexpensive that approximately 26 million people have taken advantage of it,” according to Slate.com. “With sites like Ancestry.com and 23andMe, you can easily submit samples of your DNA and receive information about your family history and personal health.

“Both sites allow individuals to obtain raw DNA data files, which they can then upload to an open-source database like GEDmatch in order to connect them to distant family members. While the files are supposedly anonymous, one study found that an outside individual could identify an ‘anonymous’ set of data using GEDmatch in just one day.”

It is now a tool for law enforcement. For instance, police can create a “user profile” for a crime suspect, upload that suspect’s DNA, and find a match, without requiring a court order of any sort.

A suspect in a scenario such as this one has no idea that his or her DNA has been uploaded to a public website. Joseph DeAngelo, the Golden State Killer suspect in over a dozen murders and 50 rapes in the 1970s and 1980s, was apprehended in part due to this technique. It might appear, in his case, the concern for public safety outweighs the right to privacy, but not every suspect in every case in the U.S. is an alleged serial killer.

According to The Gazette in Iowa, “A paper published last year in the Public Library of Science’s Biology journal presented survey data about the use of DNA by law enforcement. More than 90 percent of respondents said agencies should be allowed to search genealogical databases for evidence about violent crimes and missing people. A minority, 46 percent, said the tools should be used for nonviolent crimes.”

In fact, 80 percent of cases in state criminal dockets are misdemeanors. As many Americans have criminal records as have college degrees.

Additionally, human error, or the potential for human error, plays a significant role in the ambiguity associated with many criminal cases. For instance, if law enforcement collects DNA at a crime scene, it may or may not be the DNA of a suspect. If later on it is proven to be the DNA of someone else, an innocent person, and the data has been uploaded to a public open­source database, the damage has already been done even if law enforcement subsequently deletes the mistaken file. The data potentially remains in the public domain.

The effects of uploading a suspect’s DNA data to an open-source database may very well outlive that person’s experience in the criminal justice system. When released from prison, the person’s data would remain accessible to employers and insurance companies, among others, making it more and more of a challenge to successfully re-enter society. Family members, perhaps even generations to come, would be negatively affected as well.

A window of opportunity now exists to come up with intelligent regulations and policies that ensure genetic privacy for all citizens.

But we need to act before that window closes. 

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Sources: Future Tense, a partnership of Slate, New America, and Arizona State University; thegazette.com

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