Episode #4 Genocracy focuses on the recent advancements of genetic technologies as well as the socio-political and cultural implications that follow. The private company 23andMe offers a low cost, genetic testing product that markets itself as empowering the individual with his/her genetic data, even though they initially neglected to announce that they were actually reselling people’s genetic data to pharmaceutical companies. On the other hand, the Personal Genome Project sets a better example by offering a platform where an individual can donate their genetic and environmental data to a public domain, with full acknowledgment of the privacy risks. Artists Heather Dewey-Hagborg and Paul Vanouse also create projects that investigate the notion of genetic determinism that surrounds the language of genetics. The works of these artists (Stranger Visions and Latent Figure Protocol, respectively) challenge the validity, authority, and security of genetic profiling technologies. 

Key words: genotyping, rapid sequencing advancements, open access and sharing of genomes, privacy and security, identity (am i my genes?), genetic determinism, genocracy, false promises of the human genome project

Genocracy features:

  • Jason Bobe
  • George Church
  • Marcy Darnovsky
  • Heather Dewey-Hagborg
  • Paul Vanouse
 

Direct-to-Consumer: 23andMe's Personal Genome Service

Founded in 2006 by Linda Avey, Paul Cusenza and Anne Wojcicki, 23andMe is a privately owned company that began offering direct-to-consumer (DTC) genetic testing services that allows consumers to know more about their health and ancestry. The process works by ordering a kit online, registering on their website, and mailing in a genetic sample in the form of spit-in-a-vial. The company then gives an interpretation of the genetic data such as health-related risks and ancestry information. This stemmed from the popular notion that a patient should have full access to their genetic data and/or shouldn’t have to pay thousands to have their genome sequenced. So, in November of 2007, 23andMe began selling this genetic testing product, and today you can get your results for only $99.

 
 
23andMe Takes First Step Toward FDA Clearance

23andMe Takes First Step Toward FDA Clearance

What the search engine is to Google, the Personal Genome Service is to 23andMe.

However, this “highly democratizing and empowering” genetic testing product may not be as altruistic as it claims. Let’s not forget that co-founder Anne Wojcicki is married to Google billionaire Sergei Brin (now separated), and as it turns out, Google Ventures is their largest investor giving the company $50 million in 2012. It’s common knowledge now that Google, once faithful servant to the public, creating a powerful search engine for consumers to access information, has since turned around and parceled out our browsing and search data for advertising agencies to better target us. The company continued to sell their genetic testing service despite not having approval from the Food and Drug Administration (FDA). In addition, their website and privacy policy continued to claim that they use an encrypted system to keep your genetic information private. Finally in 2015, 23andMe publicly announced that they intend to resell consumers’ genetic data to pharmaceutical companies, namely Genentech. The company sends customers their genetic data but says 80% of them agree that 23andMe owns the aggregated data with rights to use it for research. It says the database is the largest repository of human genetic data in the world.

 

 

23andMe Is Terrifying, but Not for the Reasons the FDA Thinks (2013)

Of Course 23andMe's Plan Has Been to Sell Your Genetic Data All Along

Surprise! With $60 Million Genentech Deal, 23andMe Has A Business Plan (2015)

23andMe to Mine Genetic Database for Drug Discovery (2015)

 

It wasn’t until July 2012 that the company finally began the process of getting clearance from the FDA to sell the kit that it had already been selling for five years. The public announcement was likely due to huge pressures from the FDA that date back since mid-2009. “The FDA references 14 face-to-face meetings and telephone calls, hundreds of emails and dozens of written communications during which the agency said it provided specific feedback on study protocols that would prove 23andMe’s tests were useful as diagnostics and other tests to prove the 23andMe kits gave consistent results.” Aside from 23andMe’s on-going friction with the FDA, the larger issue at hand is how the company’s motivations were able to slip by the public’s consciousness. By marketing themselves as a tool to empower individuals with their genetic information, along with the lengthy consent forms that we’re all already so used to agreeing, it’s not surprising that 23andMe has already amassed over a million individuals genetic information. This is an extremely powerful database, one that could contribute to dozens of future medical discoveries, and at the same time become an emerging tool for surveillance, control, and identity theft. Before subscribing to 23andMe’s genetic testing service, the public should be well aware of the ease at which genetic information can be traced back to its owner.

 


An open consent model

The Personal Genome Project was established by George Church in 2005 as an open-source alternative to the 23andMe business model. The organization publicizes the complete genomes and medical information of 100,000 volunteers to be used strictly for genomic research. Church, along with Jason Bobe, make sure that volunteers are fully educated on the consequences of sharing this information, and require each participant to pass a series of tests. In order to make volunteers feel confident, George Church himself agreed to be a participant, and the organization is interested in exploring the risks that volunteers might encounter, such as insurance or employee discrimination. As of August 1, 2014 there have been more than 3500 volunteers, and there are plans to expand the program to Europe, South America and Asia.

the first 10 participants in 2007

the first 10 participants in 2007

 

Meet George Church, founder of the Personal Genome Project. GENOME: THE FUTURE IS NOW, a multi-media documentary project with a film and interactive website, has exclusive access to Harvard scientist Dr. George Church and his Personal Genome Project (PGP) in which he unlocks the genome sequences of the first ten volunteers offering themselves up as guinea pigs, pioneers, genomic astronauts for an unprecedented experiment at the crossroads of science, health, and ethics.

 

examinging the Ethics / Risks of Genetic Technologies

I’ve always been interested in how technologies shape our lives from most intimate aspects to large social stratification issues, and that’s one of the threads that led me here
 

 

23andMe co-founders Anne Wojcicki and Linda Avey declined to be interviewed for this episode, so we contacted Marcy Darnovsky from the Center for Genetics and Society to speak on 23andMe's genetic testing service from a critical point of view. In her interview, Darnovsky states she is unsure if the public is cognizant of biopolitics that govern our bodies and lifestyle, and that more often than not the public’s’ imaginations are seduced by corporate science. The recent advancements in gene sequencing and synthesis along with personal genome services like 23andMe mark a step towards a possible future of eugenics, a society obsessed with breeding perfect humans cause a greater rift between have’s and have-not’s. “We need to make it a conversation about the rules that we want- and that's a conversation about values and morals.”

 

Erase & Replace: the part two of stranger visions

Heather Dewey-Hagborg’s Invisible project flips Stranger Visions on its head, finding ways to remove DNA so that members of the public can’t be traced by authorities or put under surveillance. In a rather tongue-in-cheek infomercial, Heather presents the viewer with dire realities of our present- that governments and corporations have the ability to track us without our permission using just a small sample of saliva. By being able to erase or replace DNA traces, Invisible returns the power to the citizen, allowing them to “delete 99.5% of DNA left behind.” The project is entirely open source, and kits are available for 200 dollars. If this is too far out of your price range, The Invisible Project offers a DIY Guide to make your own sprays.

 
 

Undermining Authority 

These are the kind of highly contested territories that I’m interested in communicating through - in a way seizing back these things on the edge of cultural communication.
 

Paul Vanouse has worked as a conceptual artist for the past 25 years, exploring the language, rhetoric, and culture of genomics. In the 90s, his work focused heavily on performance, collaborating with the notable art group Critical Art Ensemble on Cult of the New Eve (1999-2000), and exploring questions of media influence in pieces like The Follower and Consensual Fantasy Engine. In the late 2000s, his work turned to biotechnology, its influence and ability to manipulate the masses. “These are the kind of highly contested territories that I’m interested in communicating through - in a way seizing back these things on the edge of cultural communication.” Latent Figure Protocol (2007-2009) concentrated specifically around DNA fingerprinting technology and law enforcement’s ability to convince the public of the technology’s accuracy. After some research, Paul realized that the system known as DNA fingerprinting was actually quite flawed, “there have been about four different processes that have been labeled as ‘DNA fingerprinting.’ There’s no stability to it because that was not the idea.” Usually DNA fingerprinting companies work exclusively for the prosecution, and are not open about their laboratory methods to the public. So in Latent Figure Protocol, Vanouse manipulates the standard protocol to create a variety of cultural images (skull and cross-bones, copyright symbol, etc.), in order to illustrate that these technologies could be openly interpreted and manipulated, and in that way undermining the authority and validity of that widely-used protocol.

lfp-install-cepa.jpg
LFP-web.jpg
 
 

Suspect Inversion Center

came directly out of the research conducted in Latent Figure Protocol, and took interest in the cultural fascination surrounding DNA evidence technologies, specifically in the trial of OJ Simpson. Paul felt that the Simpson trial was an important benchmark in the history of DNA fingerprinting, as the trial had more DNA evidence than any trial to date, but still managed to be refuted by the defense. The image that had been used by the newspapers to represent his “DNA fingerprint” was not actually Simpson’s DNA fingerprint, but instead a sample used by the state to demonstrate how simple and accurate the technology was. When Paul discovered this, he contacted one of Simpson’s lawyers, who said that the actual DNA image was too complicated for the prosecution, “they wanted the story to be about race and bias and they wanted to appear as if the jury had another motive.” After a great deal of research, Paul was able to find the original DNA image, and worked to recreate these images in a public setting. Vanouse and collaborators have done several performances in galleries, dressed in black lab coats, where they create “master copies” of Simpson’s DNA, under the label, SIC, a poke at popular crime shows like CSI. “The idea was then too not dress all in white coats, and dress all in black, and to be in complete inversion as to how a scientist approaches a fingerprint, in this way, as an artistic production.”

 

hacking protocols

Paul Vanouse also became interested in the origins PCR method, and began work on Deep Woods PCR (2011). During the BioArtCamp residency, Paul recreated the PCR process in the woods of the Canadian Rockies, using low-tech methods, heating samples over a campfire, and using bacteria found at Yellowstone (Thermos acquaticus). Paul was “rediscovering” a technology that had become commonplace in corporate and institutional laboratories, exploring the romantic beginning of the method from the days of PCR’s creator Kary Mullis. The scientist had actually used LSD as a primary inspiring factor, and ended up making almost no money from his creation, which many note as being one of the most important patents of the 20th century. “This notion of this fellow who invents the process, comes to a realization that these notions don’t exist without self discovery is implicated in the creation of the device used for human self discovery.”