Genetic Surveillance: Consumer Genomics and DNA Forensics
“If we each keep our genetic information secret, then we’re all going to die.”
So says Bill Maris, founder, President and CEO of Google Ventures, that $2B investment firm with stakes in more than 280 startups, looking to spend $425M on anti-aging and life extension this year.
Maris isn’t simply trying (successfully) to make headlines, he’s looking to drive a consumer genomics market by convincing people to hand over their genetic material for research. He isn’t alone on this front. 23andMe and Ancestry.com have also engaged in grand, seductive promises: Learn your carrier status! Meet your long-lost relatives! Learn how “African” your DNA is, based on “ancestry informative markers!”
This kind of hype downplays the limits and obstacles to providing reliable genetic information and using it to generate beneficial health impacts. It completely obscures the extent to which research as a system—corporate, academic, governmental, what have you—has been co-opted by private gains and has proceeded with little-to-no accountability to the public good and health. And it elides the real drivers of the genomics business model: mass data collection and brokering data access.
Much of the recent reporting on personal genomics has focused on the FDA’s battle with 23andMe about selling clinically unreliable health information, and on business developments in the sector. Earlier this month, we learned that Ancestry.com is in talks with FDA to start selling health information. Last week, the big news was that 23andMe has been cleared by the FDA to begin selling carrier screening tests for 36 genetic variants.
Another recent news story bridges what have been largely segregated conversations about personal genomics and DNA forensics. Brendan Koerner reports in WIRED about a 36-year old filmmaker in New Orleans who learned to his surprise that he was a suspect in a 1996 murder. Idaho police had run a “familial search” with DNA found at the crime scene, which bore similarities to DNA his father had submitted to his Mississippi church’s genealogy project, later bought up by Ancestry.com. Police got a warrant to compel Ancestry.com to de-anonymize the father’s DNA, and the company complied, leading them to the filmmaker’s door in December 2014. The filmmaker was cleared after 33 days, but the implications of law enforcement collaborating with personal genomics companies in cold cases came as a chilly reminder of the current climate of mass surveillance—genetic and otherwise.
In the week after the story broke, several reporters investigated whether other personal genomics companies were collaborating with law enforcement. Amid fanfare regarding the FDA decision allowing them to partially resume selling health-related tests, 23andMe responded by publishing a “Transparency Report” on its website stating that it had received and denied five requests from law enforcement since 2006.
Yet the lessons of surveillance in other contexts caution against unchecked reliance on the goodwill of big data companies to protect their users’ privacy. Indeed, with secret courts sealing law enforcement’s requests to access other data points on civilians, how transparent are “transparency reports” anyway?
“What are you worried about? Your genome isn’t really secret.”
In the same Bloomberg Business article, Bill Maris asks us why we would want to withhold our data from an exponentially growing corporate database. The answer is: We’ve been here before.
In a post-WikiLeaks world where #privacy is trending, many of us are still formulating and learning the impact of corporate and government surveillance over daily life. Now we have to grapple with the realization that server farms aren’t just for phone records: DNA, the code of life, can also be analyzed, synthesized, and applied in innumerable contexts for a range of political and corporate ends.
Science recently reported on the growing number of biobanks around the world that contain over a million samples, and as sequencing and data storage costs fall, the numbers of samples and banks could continue to balloon. We already know that DNA databases have led to devastating impacts on people’s lives in the context of criminal justice and immigration decisions, most notably in poor communities, communities of color, and among immigrant families. The scaling up of consumer genomics widens the net of genetic surveillance into more privileged populations. Whether provided voluntarily (to purchase ancestral information, or contribute to medical research) or forcibly (via the criminal justice or immigration systems) our DNA, once collected, could make us all more vulnerable.
The Gmail Metaphor for Genomics
In the last few years, as 23andMe has scaled its empire, commentary has repeatedly compared the genetic data collection of personal genomics companies to the case of Google (yes, 23andMe CEO Anne Wojcicki was until recently married to Google founder Sergei Brin). In 2013, Charles Seife, writing in Scientific American, argued:
“[A]s the FDA frets about the accuracy of 23andMe’s tests, it is missing their true function, and consequently the agency has no clue about the real dangers they pose. The [23andMe] Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public.”
Former CGS blogger Jesse Reynolds would agree, writing in 2010:
I've long been of the mind that, just as the traditional business model of newspapers is to get revenue not from readers but from advertisers, personal genomics companies see the potential profit not from the consumers themselves but from the compiled databases – likely in the form of selling access to them.
However, 23andMe spokesperson Angela Calman-Wonson claimed just the opposite in an interview in Nature about the recent FDA decision, stating that consumer testing “is always going to be at the core of our business model.” Reporter Erika Check Hayden apparently didn’t find this convincing, and followed the quote with the statement:
As it grows larger, 23andMe's customer database becomes more valuable for research and drug development by the company and its partners, such as California-based biotechnology firm Genentech.
In his 2013 article, Seife expands his comparison of 23andMe to Google by reflecting on the search engine’s early history:
When it first launched, Google billed itself as a faithful servant of the consumer, a company devoted only to building the best tool to help us satisfy our cravings for information on the web. And Google’s search engine did just that. But as we now know, the fundamental purpose of the company wasn’t to help us search, but to hoard information. Every search query entered into its computers is stored indefinitely. Joined with information gleaned from cookies that Google plants in our browsers, along with personally identifiable data that dribbles from our computer hardware and from our networks, and with the amazing volumes of information that we always seem willing to share with perfect strangers—even corporate ones—that data store has become Google’s real asset. By parceling out that information to help advertisers target you, with or without your consent, Google makes more than $10 billion every quarter.
Yes, Gmail has changed our lives, but what have we lost with Big Brother(s) reading our emails and mining the data for sale or subpoena to advertisers, law enforcement, etc? What about Facebook experimenting with the data it collects on its users to research how to sway users’ emotions? Does Facebook’s research inform its sponsorship of the 2016 presidential debates?
As Alex Lash noted recently in his reporting on the scramble to cash in on the genome (Oct. 20):
Even if our genomes aren’t stolen, can we trust the corporate keepers, or will they inappropriately spill the beans on our medical conditions? Remember the story about Target sending pregnancy-related coupons to a teenager’s house?
23andMe is positioning itself as an advocate for “democratizing healthcare,” luring consumers to buy information related to their health and family in exchange for handing over a bundle of data that are potentially more precious and valuable than search queries and cookies combined. For better or for worse, genetic data can be used for a range of powerful ends, including linking someone to a crime (that they may or may not have committed), selling to third parties for advertising purposes, or developing expensive drugs putatively precise enough to target particular genetic variables.
We need to think broadly about the connections between mass surveillance, biological discrimination, criminal justice, DNA as irrefutable evidence of family or of crime, immigration procedures. And we need to consider whether concepts like “privacy,” “informed consent,” and “notice” are robust enough to preserve human dignity in the face of Big Data’s latest project: mass genetic surveillance.
Previously on Biopolitical Times:
- Big Money Heading for Consumer Genomics
- "Moonshot Medicine": Putative Precision vs. Messy Genomes
- Biotech Imagination: Whose Future is this?
- The Blurred Lines of Genetic Data: Practicality, Pleasure and Policing
- California and your DNA: Is it a healthy relationship?
Image via Wikimedia