If ever there were a domain of science that draws on and fuels imaginaries of a total archive, genomics is it. Genomics promises to reveal the secrets of life, to cure cancer, to solve the world’s energy problems, but only if we create open access to all genomic data. Life demands nothing less.
In the dominant popular account of genomics, scientists who pioneered genomic techniques while working on the Human Genome Project (HGP) fought an epic battle to create such an archive of genomic data that all could contribute to and access (Shreeve 2005; Sulston and Ferry 2002). In this story, a moral economy of science guided by the norms of openness and communalism struggled to survive in the face of the growing power and widening influence of a capitalist economy. Judgment is clear: leaders of the public effort to sequence the human genome were heroes; Craig Venter and his venture capitalist backers were villains.
In these accounts of the HGP, the quest to share human genome information—to create an open genomic archive—motivated scientists working on the public Human Genome Project, and led to their passionate commitment and personal sacrifices. At my own institution, the University of California, Santa Cruz, Jim Kent reportedly spent day and night in his garage writing code, stopping only to ice his wrists (Townsend 2015). Yet, questions arose on the ground about the value and meaning of an endeavor that required an ever-growing number of automated sequencers to displace humans and to consume large amounts of reagents and capital (Sulston and Ferry 2002:177). Who and what benefitted from these informatic and automatic infrastructures designed to create, store, and manage ever-expanding archives of genomic data? Despite the valiant effort to defend public science, many on the ground feared that genomics installed a technocratic and capitalist regime at the heart of the life sciences in which power inhered in the few who had the money to buy and operate sequencing machines.
Their concerns did not go unstoried. Many genome scientists wrote accounts of the HGP that brought to the fore these deeper structural transformations that unsettled understandings of the value of shared data—total or otherwise—as the grounds of knowledge and the public good. Illustrative is John Sultson’s The Common Thread (Sulston and Ferry 2002). Sulston led the UK arm of the HGP, and is widely recognized as a hero of the effort to defend public access to human genome sequence. Yet the book’s opening line makes clear that his would be no simple tale of triumph: “I just heard the prison door close behind us” (Sulston and Ferry 2002:1).
This startling description recounts the moment Sulston realizes that he has signed onto the HGP, and there is no going back. In the pages that follow, he chronicles the transformation of his everyday work life as it moves from the small intimate spaces of intense human interaction at the Laboratory of Molecular Biology (LMB) in Cambridge to the vast cavernous spaces of the sequencing machines at the Sanger Center, built in Hinxton. We learn of a life no longer marked by late-night encounters in the lab, coffee time, drunken punting expeditions, and Guy Fawkes celebrations, but one lived under the pressure of keeping an army of sequencing machines running on schedule (Sulston and Ferry 2002:50). Sulston reluctantly, but seemingly inexorably, enters a capitalist world of production. The amounts of money required continually threaten to overreach the capacities of public governments and private foundations, making the HGP vulnerable to a venture capital takeover (Sulston and Ferry 2002:99). Sulston receives multiple offers to join private industry, offers he reportedly always took seriously. And while he accuses Venter of no longer being in science, but in business, just a few pages on in his account he explains that he too was in business: “Bob [Waterston] and I had the biggest businesses at the time; Eric Lander aspired to have the biggest business” (Sulston and Ferry 2002:189).
These businesses sought to operate at ever-greater speeds and efficiency. For this, they required ever-greater resources and tightly controlled management. Not everyone could take part. Indeed, many would be excluded. At the end of the HGP, of the 20 listed as authors on the Nature paper, only two, Sulston argues, had “the high level of industrial organization needed to accelerate the production of sequence”: the Sanger Center and Bob Waterston’s lab at the University of Washington in St. Louis (Sulston and Ferry 2002:203). Despite his allegiance to the ethos and practices of openness he attributed to the LMB, Sulston found himself a central character in this transformation of his field of biology into an industrial-scale production system that excluded all who could not keep up. It was, along with other domains of knowledge, becoming a part of informatic capitalism.
Knowledge, Francois Lyotard argued a decade before the launch of the HGP, had become “an informational commodity indispensable to productive power.” Indeed, he asserted, it was “a major—perhaps the major—stake in the worldwide competition for power” (Lyotard 1979:5. Certainly, by the mid 1990s, actors central to genomics acted as if this were the case. Craig Venter and his financier Wally Steinberg justified their entrée into the race to sequence the human genome as nothing less than an effort to “save America’s biotech industry.” By 2000, the fortunes of the U.S. stock market hinged on events in human genomics, and world leaders took an active role in its governance (Sulston and Ferry 2002:247).
While predicted by a social theorist a decade prior, Sulston, a biologist, lived through and described these changes. “Biology,” he observes, “had undergone an economic sea change—it now held the promise not only of tremendous knowledge and great benefits to humankind but also fabulous wealth. As biologists we had lost our innocence” (Sulston and Ferry 2002:209). The changes left untouched all dimensions of the scientific life Sulston had known: its buildings, its practices, and even the core value of openness itself. By the end of the HGP, it was the very goal of an open and total archive of genomic data that fueled the goals of production and wealth accumulation that befit the sequencing machines. After Venter announced at the Cold Spring Harbor meetings that ABI was going to fund a company to sequence the human genome, both Wellcome and the National Institutes of Health (NIH) greatly increased the amount of funds they devoted to the HGP, entering the sequencing machines “arms race” (Sulston and Ferry 2002:220). In the fall of 1998, The Sanger Center bought 30 of the new ABI capillary sequencing machines at $300,000 apiece; Eric Lander at the Broad Institute bought 125. In 1999, the year after Venter launched Celera, ABI sold a billion dollars’ worth of sequencing machines. If there was any clear winner in the race to complete the human genome sequence, it was this manufacturer of the machines (affectionately known by some genome scientists as “Arrogant Beyond Imagination”; Shreeve 2005:60).
Sulston and others at the Sanger Center did try and resist this big-money dimension of genomics. Reportedly, Tim Hubbard, then head of sequence analysis at Sanger, explored the possibility of using a “copyleft” agreement developed by the free software movement to protect the public project’s human genome data (Love and Hubbard 2005). Such an agreement would have provided a formal legal meaning to the HGP’s principle of open access, specifying that all were free to use HGP genome data but could place no restrictions (e.g., patents) on its further development. However, those who oversaw the public genome databases reportedly strongly objected. The data, they argued, should remain free for all to use in whatever way they saw fit, including patenting and licensing further development and redistribution of the data (Sulston and Ferry 2002:238; see also Cukier 2003).
There was indeed no going back, not even for openness. The power to sequence—and thus to play a major role in the genomics revolution—was already concentrated in a few institutions. Wealth had become a major stake in biology. Inequalities between researchers—both among the genome mappers and sequencers and subfields of biology—became institutionalized as the price paid for universal access to the sequence of the human genome.
Today, the injunction to share and to make available all genomic information— not just of the human genome, but all genomes—is driven once again by a belief in the tremendous power of genomics. Consider this billboard I encountered as I was riding my bike home from a movie in January of 2015.
The billboard stands at a busy intersection in San Francisco where tens of thousands pass by every day. These messages about the power of genomics are joined by messages about the importance of sharing one’s DNA and data. Perhaps later, while on Facebook, Bay Area citizens will come across MeForYou.org and learn how they can help another UC, the University of California, San Francisco (UCSF), through sharing their DNA and medical records (http://meforyou.org). UCSF launched the MeForYou.org social media campaign to “put a new thought into the public consciousness” that sharing genomic data and medical records not only helps science, but also communities and loved ones. MeForYou, UCSF spokesperson David Arrington argues, is part of an effort to create a new “social contract” with biomedicine in which people agree to share their data in exchange for new knowledge that helps all people (Lu 2013). The moral force of the initiative is strong. Who, after all, would not want to help Georgia, the young girl who is the MeForYou poster child? Dissent—or even public dialogue—under these conditions is difficult.
These dreams of total access to all genomic information inspire and create visions of new routes to universal knowledge and democracy. Yet these commitments to the open flow of genomic information exclude and exert control in ways that led even genomics’ most ardent supporter to invoke the imagery of a prison. We are in need of languages and frameworks that allow us to grasp and speak about these powerful and paradoxical dimensions of our ever-deepening commitments to total archives in an age of bioinformatics.