Among one of my horrifying nightmares is the fear to be accused of a crime I did not commit. Picture the scene: You were at the wrong place, at the wrong time, and circumstantial evidence builds against you. You are trying to shout loudly that you are innocent, but no sound comes out. In my nightmare, the last chance to be saved always comes from DNA testing. After comparing my DNA with that found on the crime scene, I am finally freed.
Since DNA profiling came on the scene in 1987, developments in human genetics have made us more aware of how our genetic make-up influences our lives, from how much we drink to our likelihood of getting cancer. One positive example of this awareness is the do-it-yourself biology movement. Genspace, a community lab located on the seventh floor of a building in downtown Brooklyn, allows members to perform all manner of experiments once confined to science class, like extracting and analyzing their own DNA or growing different kinds of bacteria.
Recently, a new arrival has burst into the scene at Genspace. Heather Dewey-Hagborg, a 30-year-old Ph.D. student studying electronic arts at Rensselaer Polytechnic Institute in Troy, N.Y., has the weird habit of gathering the DNA people leave behind, from cigarette butts and fingernails to used coffee cups and chewing gum. She comes to Genspace to extract DNA from the detritus she collects and sequence specific genomic regions from her samples. The data are then fed into a computer program, which churns out a facial model of the person who left the hair, fingernail, cigarette, or gum behind. Using a 3-D printer, she creates life-sized masks that offer a depiction of what the anonymous DNA donor might look like. And they may be coming to a gallery wall near you, with a show at the New York Public Library slated for early 2014.
Such a process might seem artistically cutting edge to some. But, for most of us, the “Yuck!” factor kicks in quickly. Whether you find it cool or creepy, though, this DNA-profiling experiment raises a number of legal and ethical questions that no one knows how to handle. To what degree does the DNA we leave behind in public spaces belong to us? Does a facial mask without a name raise the same issues as a photo? In either case, what exactly is our expectation of privacy?
Just because an individual sheds DNA in a public space does not mean that he or she does not care about preserving the privacy of the genetic material. There was no informed consent given to access that data. On the other hand, some might say the major problem is not unauthorized access to data but misuse of data. It is easy to imagine a scenario in which someone sequences the genome of an acquaintance (or rival) who left a cigarette behind. If the person who tested the cigarette found a risk gene for a mental disorder and posted the results on Facebook with the smoker’s name, the information could affect his social and professional life.
Of course, Dewey-Hagbord is not looking for degenerative diseases or mental disorders in the bits of DNA she picks up off New York’s sidewalks. But still, when the sequences come back from the lab, she compares them with those found in human genome databases. Based on this comparison, she determines the person’s ancestry, gender, eye color, propensity to be overweight, and other traits related to facial morphology. Beyond privacy, this search raises questions of the ability to identify someone from their DNA traces. To what extent do genetic traits (such as ancestry) tell you about how a person looks? Based on the analysis of these genetic traits, how accurate is the 3-D facial model produced by the computer? At the request of a Delaware forensic practice, Dewey-Hagborg has been working on a sculpture from a DNA sample to identify the remains of an unidentified woman. This opens another black box at the connection between law enforcement and what we might call “DIY forensic science”: Here, what is the role of the state versus that of the individual?
In the United Kingdom, the Human Tissue Act 2004 prohibits private individuals from covertly collecting biological samples (hair, fingernails, etc.) for DNA analysis, but provides exclusion for medical and criminal investigations. The situation is more of a patchwork in the United States. According to a 2012 report from the Presidential Commission for the Study of Bioethical Issues, only about half of the states have laws that prevent testing someone’s DNA without their knowledge. It is encouraging, at least, to see that many lawmakers at the state-level have begun to discuss the question of privacy and genome sequencing.
One June 3, the Wilson Center in Washington, D.C., where I am a researcher, will be providing a forum for further policy questions on this issue. Dewey-Hagborg will discuss her research and motivations in a talk about privacy and genetic surveillance. Professor Sonia Suter of the George Washington University Law School will join her to elaborate on privacy, legal, and bioethical issues. (I’ll be speaking, too.) Another discussion will follow on June 13, 2013, at Genspace in Brooklyn. Perhaps with the help of these and other academics, artists, and policymakers, we can begin reaching a consensus about what boundaries we want to set for ourselves, before we accidently end up in a Gattaca of our own creation.
