Investigators employed a new and vastly more powerful familial searching technology to identify the person now charged as the Golden State Killer. This new technology types over 700,000 locations on the human genome for ancestry and medical information, instead of the 13 locations typed for a standard forensic DNA profile. After six years of failed searches using the 13-location profile, police turned to the 700,000-location profile and armed with this vastly more powerful genetic information, surreptitiously uploaded it to a private DNA databank. There, without disclosing their actual purpose, they hoped to find a relative of the unidentified suspect who had left DNA evidence at a crime scene decades ago.
Because of the power of this new DNA technology, police were able to make a connection to the suspect through a 19th-century ancestor of a person who had uploaded her DNA profile to the databank. She had put her genetic profile in the private DNA databank intending to discover her ancestry—which she did, but only because her DNA and identity were used in a way that she never anticipated.
It’s easy to applaud the genetic sleuthing in the Golden State Killer case because of the horrific crimes it solved, but we need to be very careful about embracing the collection, retention, and sharing of DNA for one purpose when it is used in an unintended way. We are at the genesis of the genetic era. There are profound implications that flow from the unregulated collection, retention, and sharing of DNA that threaten the genetic privacy of everyone. Harnessing the human genome will have far-reaching effects on our society—with a vast potential to transform our world in profound ways.
Consider how quickly events are unfolding. Cracking the human genome cost 3 billion dollars about 10 years ago. Today, it costs just $999 dollars to sequence your entire genetic blueprint, and two years from now, the price will fall further—probably close to $100. This is a greater technological achievement than putting a man on the moon. The potential for genetics to transform the treatment of disease, longevity, procreation, mental health treatment, substance abuse, and behavior is real—but the chokepoint is access to large databanks of DNA for research. The companies that control the commodity of DNA databanks will exert tremendous influence over the direction of research, and the development of DNA-related products, and services.
2017 was a boom year for direct to consumer genetic testing for ancestry and medical purposes. Over 10 million people have submitted their DNA samples for genetic testing to obtain information about their health and ancestry. What is poorly understood, however, is that these ancestry DNA companies see the future not in test kits, but in DNA as a much-in-demand commodity. Large pharma companies and others, seeking to profit from unlocking the secrets of the human genome, need databanks of DNA to develop new genome-based products and services.
It should come as no surprise that a company like Google, whose business is to collect information about people that is used to sell targeted advertising, is closely linked to the business of ancestry databanks and longevity-related products. Ancestry databanks are the first applications to draw in consumers to submit DNA samples, along with a great deal of other information that can be correlated to their genetic information, repackaged, and sold by these private databanks. How should this resource be collected, retained, and shared in the genetic era? Should a handful of successes in criminal cases rachet-down our expectations of genetic privacy?
Because of the vast potential for misuse of DNA, there must exist thoughtful, robust, and comprehensive regulation of public and private DNA databanks. Don’t let the success of genetic sleuthing in the Golden State Killer case ratchet-down your expectations of genetic privacy. Remember, we only hear about the successes—not the failures—because, without any legislative oversight, there is no reporting requirement when public or private databanks are searched for family members. It’s the camel’s nose of a much larger problem about the unregulated collection, retention, and sharing of DNA of innocent people in public and private databanks at the dawn of the DNA era.