Pandora’s Box: Why We Should Keep the Lid on Our DNA
By Bicka Barlow, Attorney and Forensic Expert
***Editor’s Note: The following article is one viewpoint on DNA privacy. On June 22, another viewpoint was published in the article “Privacy is Dead: Why Share DNA.”
The recent arrest of the Golden State Killer via the use of public genealogy databases has raised new and troubling issues regarding the privacy for our genetic information. Groups of investigators are calling on more people to share their DNA test results from online sites such as 23andme and Ancestry.com to help solve cold cases. While the goals of these individuals and groups, solving cold cases and identifying bodies, are admirable, the use of publicly available databases risks the privacy of not only those who choose to upload their information but also that of their entire family.
Most of us cheer the identification of someone like the Golden State Killer and consider law enforcement access as a benefit. But, as illustrated by the Golden State Killer search, investigators had to research generations of family history, enlisting those family members who had uploaded their information to provide family history such as names and locations of relatives. Some of this information went back generations. Initially, this search lead to the wrong man. Imagine the horror and stress of the police showing up at your door because you are now wrongfully a suspect in a decades-old homicide.
Publicly available databases such as GEDmatch contain much more information than we realize which may be misused. As our understanding of the genetics of disease grows, the information in these databases could be used to identify families with genetic predispositions for diseases such as cancer or diabetes, leading to increased health insurance costs or even a lost job. As with Facebook, the public does not understand the significance of revealing this private information, which could be used by health insurance companies, employers and even a stalker intent on finding a specific person or family.
Twelve states allow convicted offender DNA databases to be used to conduct familial searches to identify close relatives to suspects in cold cases. However, the state databases are subject to strict rules regarding when and how these searches are conducted. The government recognizes the privacy concerns of those individuals who may be identified but are not the person being sought, as police investigations can be significant intrusions into a person’s life.
While laudable, the calls to increase the number of profiles in these public genealogy databases may be opening up a Pandora’s Box of genetic discrimination. We all should think long and hard before undertaking such public disclosure of our most sensitive genetic information.
In 2004, Ms. Barlow became the DNA attorney for the San Francisco Public Defender’s Office where she acted as an in house expert, consulting with attorneys on cases involving DNA evidence and acting as co-counsel primarily on homicide and serious felony cases. In 2013, she returned to private practice and specializes in cases involving forensic DNA evidence throughout the United States. Ms. Barlow obtained her J.D. from the University of San Francisco School of Law, graduating Magna Cum Laude. She received her BS in Genetics from UC Berkeley. She obtained an MS from Cornell University in the fields of Genetics and Developmental Biology, with minors in Plant Molecular Biology and Cellular Biology.