Photo by user Carolien Coenen
Science / Genetic Portraiture

Gene Sequencing Advances May Create New Questions Concerning Privacy Rights

What if you could make a portrait of someone you had never met? Even scarier, what if someone you had never met could make a portrait of you?

This idea instills fear in the average person, but why? What makes this so frightening is that making a portrait usually implies that the artist knows something about the subject. Portraits are often collaborations between the subject and the artist meant to express the personality of the subject. How can this possibly be achieved if the artist and the subject have never spoken?

The answer lies in our DNA. Recent innovations in DNA sequencing have uncovered the physical traits that are coded for in some portions of DNA. By figuring out the specific combination of nucleic base pairs present in someone’s DNA, one can recreate facial structure, hair color, age, eye color, and other traits that are integral to a person’s appearance.

Heather Dewey-Hagborg does just that in her new series “Stranger Visions.” One of her portraits on display at the Bowdoin College Museum of Art depicts a black man staring directly at the viewer. The portrait is actually a three-dimensional printed mask, so the viewer is able to see all sides of the subject’s face. Dewey creates these portraits using objects that she finds on the street, such as cigarette butts or pieces of gum, and extracts DNA from the saliva cells. She then sequences the genome and creates three-dimensional printed images (which take the shape of masks) of people she has never seen. The portraits are then displayed with the sample that the DNA was extracted from, the ethnicity of the subject, and the time and place from where the sample was taken.

DNA, which is the basis for all human life, is simply a combination of four different nucleotides: A, C, T and G. The sequences in which these nucleotides are strung together determine everything about a person. Dewey-Hagborg creates her portraits by sequencing forty different locations on the genome, which she has identified to be related to different physical traits. She then runs the genomic sequence through a computer program that she wrote, which will tell her the likelihood, based on the nucleotide sequence, of a person having certain traits. She then uses modified facial recognition software to recreate these faces and print them using a three-dimensional printer at New York University. She does not know who they are, but she knows what they are made of.

Perhaps this would not be scary at all if Dewey-Hagborg were a geneticist turned artist. Unfortunately, the truth is that she is just a regular person. She performs her DNA sequencing at a Brooklyn open biotechnology lab called Genspace. This is a community biolab where regular people can rent space to perform genetic experiments on their own. Dewey-Hagborg took a six-week-long course in DNA sequencing and has crowd-sourced her code for the facial recognition software.

This exhibition has brought attention to how available DNA sequencing has become to the general public. A doctorate is no longer required to unearth the unique code that tells you everything about a person. A random stranger can pick up the gum you spit out on the way to work, or a strand of hair that got left behind on the subway, and use it to recreate your image.

Five or ten years ago, these were not questions that most people were concerned with. Back then, the technology was in such an early stage of development that no one foresaw it progressing so quickly.

But, the availability of technology relating to DNA sequencing is expanding every day. According to the National Human Genome Institute, the cost of sequencing a human genome in 2001 was $100 million. By 2008, that cost had dropped to $10 million. Two years later, it had become fifteen thousand dollars. And today the price of sequencing a human genome hovers around one thousand dollars. This technology is becoming increasingly available to the general public, which has heightened concerns about DNA privacy.

In my previous article, I explored the dangers of creating a DNA  database in order to streamline medicine and healthcare. In this system, everyone’s DNA would be sequenced and placed into a national database so that different doctors could tailor treatment to each person’s genome. But now that genomic sequencing pricing is dropping so radically, the privacy concerns explored in that article are even more relevant. As Dewey-Hagborg made clear, anyone with access to genetic remnants that people so often leave behind—the person sitting next to you on the subway, the dog walker who picks up your cigarette butt after you go back inside—can then sequence that DNA furtively. But these examples are about strangers, and what does it really matter if strangers know what is encoded in your DNA? These things would be far more dangerous in the hands of someone who had power over us.

Imagine you walk into a job interview for your dream job. You are in your early thirties, extremely well qualified, excited, and motivated. You are perfect for this position and both you and your interviewer know it. You sit down across from the interviewer and take a sip of water from the bottle on the desk to calm your nerves. The interview goes extremely well, and you leave feeling extremely confident. A week later you find out that you were passed over for another candidate. Why?

It is entirely possible, with today’s genetic testing availability, that a future employer could take that water bottle with your DNA on it and sequence the DNA to find any genetic mutations that could lead to a number of horrible diseases. For example, the DNA on the water bottle could reveal one of the mutations for early onset Alzheimer’s disease. Early onset Alzheimer’s starts revealing symptoms around the age of forty-five. A company could discover this about a future employee and not hire them for a position they are otherwise qualified because now they have the knowledge that the candidate’s mental state could deteriorate very quickly starting at a very young age.

Because of the increasing availability of these technologies, privacy concerns have become very relevant. Are remnants of DNA that we leave behind in public places considered public property, like a couch abandoned on the side of the road? Or do they inherently belong to us and therefore not be available for public consumption? In the same way that wire-taps have become a hot topic in the last few years in the privacy sphere, DNA testing is likely to be the same. These questions, and more, are currently being explored in litigation. In a 2004 class action lawsuit filed in Texas against a DNA testing company, the plaintiffs accused the company of releasing their private genetic information on the Internet. The company argued that they had done the sequencing, and so therefore the information contained in the DNA belonged to them, with which they could do what they pleased.

This case and others are still pending in the courts, leaving the general public to wonder when, not if, we will have to worry about our genetic information becoming part of the public sphere. It raises the question: what else can someone with these scientific resources recreate? Would it be possible to recreate actual flesh and blood from these remnants of DNA we so carelessly leave behind?
These questions bring along with them a number of privacy concerns. Is it a violation of privacy to take someone’s DNA from the street? Or is it the same as leaving your trash on the curb, where it becomes public property? The problem is that technology is advancing far too fast for the legal system to keep up with, and deal with, these emerging problems. We’ve seen the cost of sequencing the genome drop dramatically, and it is expected that this trend will continue. In the past, they were handwritten and housed in the laboratories of elite institutions of secondary learning. These days, procedures for these experiments can be found with a quick Google search. There is no way to resolve these questions at the moment, and I doubt that the answers will appear suddenly in the next few years. These questions, however, must be introduced as part of the growing conversation about privacy rights in the technology age.