Sometime in the past year or 2, DNA testing kits became all the rage. Chances are either you or a loved one has taken home DNA test, or at least seen a coworker or friend post a screenshot of their test results on social media. The tests are fun, affordable, and often enlightening, but more and more people are discussing the privacy concerns wrought by this technology and the brave new world of home DNA testing.
The issue of privacy in DNA testing has become more heated in recent months, after police in California and elsewhere cracked some of the most prominent and beguiling cold cases in the country—all thanks to DNA. These cases—and others like them—show the stakes involved in this relatively new science, and why it will continue to make headlines.
Catching a Killer—and Opening a Pandora’s Box
It was a cold case to match any in the True Crime pantheon. The so-called Golden State Killer was a serial murder and rapist who attacked dozens of women and killed at least a dozen people across California in the 1970s and 1980s. For decades he had lived in the shadows, leaving teams of investigators chasing every lead, running down every tip. In recent years the case had become the hobby of thousands of online amateur sleuths, who spent their free time on internet forums trying to crowdsource a murder investigation.
Finally, on April 24, 72-year-old Joseph James DeAngelo heard a knock on the door of his Citrus Heights, California home that would signal the end of his days as a free man.
DeAngelo was found by detectives after they had taken DNA left at crime scenes and entered the samples into the database of GEDmatch, where law enforcement officials found distant relatives that matched the DNA, helping them build a series of family trees that led back to DeAngelo.
The arrest was a sigh of relief to countless people—especially the victims—but it also raised concerns about privacy issues involving DNA testing. At no point did detectives working with DeAngelo’s DNA actually have to get a warrant or ask for a sample. They merely entered the crime scene DNA into a database, got a match, and then trailed DeAngelo until he discarded something that could be tested for DNA.
These concerns got further airtime in late September, when Sacramento police announced that they had arrested a suspect in a separate series of sexual assaults—all thanks to DNA technology. Roy Charles Waller, 58, the so-called “NorCal Rapist,” was linked to the rapes of at least 10 women beginning in 1991, after a DNA sample from one of the crime scenes matched a sample on the public genealogy website GEDMatch. For years the NorCal Rapist was a cold case that had bedeviled investigators in northern California, and without DNA technology, there is no telling when or if a breakthrough would have come.
That breakthrough followed news in August that investigators in Colorado had arrested a suspect in a string of horrifying hammer attacks in the Denver area in 1984 that left at least 4 people dead and a community in terror. Alex Christopher Ewing, a 57-year-old Nevada resident, was arrested after a DNA test linked him to one of the crime scenes.
The bottom line? For investigators, DNA tests get results, helping solve some of the most hopeless of cold cases.
In the case of DeAngelo, we can all see how DNA testing can potentially make society safer. But what happens in the more mundane contours of life? With relative matching a popular feature of DNA kits, how much should these companies be required to tell users about the people who have matched with them? Must they be informed that it was a person uploading raw DNA material that had matched with them? Should these companies be required to screen such people to make sure they aren’t in law enforcement? Should companies be required to hand over DNA data if law enforcement believe it can aid an investigation?
Companies like MyHeritage require consent from customers before sharing their info with third parties, or notifying other users that they are a DNA match. And indeed, MyHeritage maintains a section on its website devoted to explaining their policies regarding law enforcement requests.
There aren’t any simple answers to these questions,and they are sure to bedevil DNA testing companies as the industry grows. In addition to use by law enforcement, there are concerns that DNA data could be used to deny people insurance based on their genetic disease risks, or be used to prove or deny parentage without receiving the consent of the people in question.
Concerns about these potential issues have even led some to call for lawmakers to get involved and apply some sort of universal security and disclosure standards to safeguard consumers as the industry grows.
In Other News...
It was a mystery that had haunted Steve Dennis his entire life, ever since he was a newborn baby found in a phone booth in Lancaster, Ohio in 1954 wrapped in a blanket inside a cardboard box.
In the decades to come, Steve Dennis lived a full life under the shadow of the unknown, eventually becoming a father himself. Earlier this year, 3 months after submitting a DNA sample to Ancestry, he received an email from a DNA match, a first cousin who said he had always heard that he was related to a baby left in a phone booth. The cousin put Dennis in touch with his half-sister, who then contacted his mother, now 85-years-old, to help piece together the past and shed some light on where he comes from.
Dennis said in an interview earlier this year that he plans to visit his mother, even though there’s only so much she remembers. He also told a reporter this year that he would’ve liked to finally know what his birthday is, but his mother could not remember.
A Brave New World of Science—and Concerns
DNA testing presents an entire world of opportunities for genetic research and potentially, in the world of health care and medicine. In recent months, news report after news report have shown how much of a boon DNA testing has been for investigators seeking to piece together cold cases that had gone dormant for years, dooming victims to live in fear, and leaving justice deferred.
While DNA testing will no doubt help solve crimes in the years to come, it has opened a number of privacy concerns that will only become more prominent as this technology becomes more ubiquitous in our daily lives. It will be up to us to decide what we give up in the name of science, and to what extent we will give up our privacy for the sake of justice.