GENEWATCH
 
THE $1,000 GENOME: CAVEAT EMPTOR
By Andrew D. Thibedeau
 

We will dispense with the starry heavens and so convert to right use from uselessness that natural indwelling intelligence of the soul.1

-Plato, The Republic

 

In his forthcoming book, The $1,000 Genome, Kevin Davies casts an uncritical gaze at corporate biotechnology, offering little more than a protracted puff piece on speculative technology. He populates his narrative with the leading lights of that industry, celebrating their innovation and avarice in equal measure. Davies's dramatis personæ—reading like a Who's Who of the biotech industry—is almost exclusively comprised of "life sciences" entrepreneurs and their pet firms. Throughout, his haphazard style elides these market participants with the market discourses each produces, promoting the view that they are all one in the same feature in the production of a "personalized" biomedical future. The future of biomedicine has its enemies, however, and first among them are pseudojournalistic partisans who think their love of biotech capital translates into some kind of knowledge. The $1,000 Genome is much like the "personal" biotechnology industry it chronicles, ultimately looking to capture market share in the name of health and market genetic misinformation in the name of truth.

Davies offers the telling story of Jonathan Rothberg, founder of CuraGen Corp., 454 Life Sciences Corp., Ion Torrent Systems, Inc., Clarifi Corporation, and RainDance Technologies Inc.  Rothberg—DNA sequencing pioneer and architect of hundred-million dollar profits—is also the father of a child born with tuberous sclerosis, a hereditary condition in which the brain, skin, and major organs become covered with small tumors.2  Faced with his daughter's illness, Rothberg's "typically audacious" response was to found the Rothberg Institute for Childhood Diseases, "a non-profit organization dedicated to finding a cure for children suffering from Tuberous Sclerosis."3

In addition to his foundation, at his eleven-acre ocean-side home Rothberg also commissioned the mammoth Stonehenge-like sculpture entitled the "Circle of Life."  He built it "for [his] kids," Davies writes, "as if it was [sic] entirely routine to import 700 tons of Norwegian granite and sculpt, polish, and arranged it according to celestial factors on one's own oceanfront property."4 The giant stones are arrayed according to the birthdays of Rothberg's children as well as other astrological "events."  "Think of the Circle of Life as a complex watch," its creator Darrell Petit is quoted in Stone World magazine, which "demonstrates that these structures can function as powerful astrological instruments with substantial predictive abilities."5

Rothberg's sculpture is like Rothberg's foundation, which is like any of Rothberg's biotechnology companies—all of which are like Rothberg himself: a perfectionist "biotech impresario" who nevertheless reminds Davies of "a boy trapped in a man's body."6 Whether intentional or not, this insight captures the doubly-capricious ideology that unites Rothberg and his biotechnology businesses and that is metaphorically expressed in his sculpture the "Circle of Life," namely: that DNA can be thought of as "a complex watch" that, upon the expenditure of adequate capital, can "function as a powerful ... instrument with substantial predictive abilities."  In other words, human traits and diseases can be analytically reduced to genetic causes. Davies shares this misleading misperception. "[M]ost human disease ... such as heart disease, diabetes, obesity, and cancer," he writes, are "caused primarily by common DNA variants."7 Naïve at best, this essentialist view of genetics—a kind of genetic astrology—is the tacit assumption lying behind the characters and companies Davies chronicles.

"Genetics isn't just a science," Barbra Katz Rothman argues in her book Genetic Maps and Human Imaginations, "[i]t's a way of thinking, an ideology."  "We're coming to see life through a 'prism of heritability,'" she writes, "a 'discourse of gene action,' a genetics frame."8  It is in this "genetic frame"—with promises of horoscopes spun from strands of DNA—that direct-to-consumer (DTC) genetic firms like 23andMe, Navigenics, and deCODEme deploy genetic astrology as a marketing strategy.  "When you go to a bar," Davies quotes Linda Avery, co-founder of 23andMe, "the pickup line could change from, 'What's your sign?' to 'What's your haplogroup?'"9 Kari Stefansson, deCODEme co-founder and Executive Chairman, describes his company as providing "a service where people . . . are coming to us to learn more about themselves."10 Of the two men behind Navigenics, Dietrich Stephan dedicated fifteen years of research "predicated on the belief that all human disease had a genetic component"11 and David Agus "believes it will come down to ... gene X is up, gene Y is down."12 "Know your CODE," Stefansson is quoted at the apex of his sales pitch: "[l]earn more about your ancestry, traits, and health risks."13  In short: know yourself by knowing your genes.

As stone monuments and tabloid back-pages the world over attest, predicting the future is a seductive business.  Moreover, the discourse situating those predictions in DNA is not new.  In 1995 Dorothy Nelkin and M. Susan Lindee observed that "images and narratives of the gene in popular culture reflect and convey . . . genetic essentialism."14 Then, as now, "genetic essentialism" represents a mode of biological reductionism resting on the fallacy that "reduces the self to a molecular entity, equating human beings, in all their social, historical, and moral complexity, with their genes."15 In other words, "[g]enetic essentialism is the idea that the essence, the nature of a human being is defined by its genes."16  The mass appeal of genetics, Nelkin and Lindee conclude, "lies partly in its image as a predictive science: a means to uncover predispositions."17 It is precisely this image of genetics as horoscope that DTC corporations purposefully invoke.  But in the search for meaningful predispositions, it becomes increasingly easy to collapse the distinction between statistical correlation and factual cause.  The subtle but significant difference between the two is lost on Davies, who spends most of The $1,000 Genome playing interlocutor to corporate biotech—rarely if ever interposing critical distance between biotechnology marketing and his reader. One can only conclude that Davies's enterprise is not, as he claims, to document a genomic revolution, but instead to sell a particular narrative in which venture-capital biotech is savior to client and shareholder alike. The ease with which Davies allows essentialist discourses to dominate his subject matter belies his unambiguous predisposition toward industrial biotechnology, calling into question the merit of his entire work.

Davies asserts that the DTC genetics is about patient "empowerment" and "personalized" healthcare.  Navigenics, deCODEme, and 23andMe all offer services that their financiers believe "will become part and parcel of twenty-first-century medicine."18   Accordingly, a 2010 report of the Government Accountability Office found that the websites of these three corporations "contain a variation of the statement that their tests help consumers and their physicians detect disease risks."19 In a series of protracted vignettes profiling various players on the biotech stage, Davies invokes genetic astrology in all but name as he recounts the services they offer. 23andMe "provide[s] the deepest dive into the genome," he writes, "presenting information on ancestry, traits ... carrier status for Mendelian disorders, and risks for common diseases."20 "The basic goal," he quotes Stefansson, "was always to use genetics for preventative health care."21   Navigenics also "focuses squarely on risk assessment for actionable, common medical conditions such as heart disease, cancer, and diabetes."22 Davies's text documents yet denies how these firms traffic in medical prognostication.

Hence Davies reproduces the proclamations of DTC biotech, decrying any suggestion that their services are medical or predictive. "From the inception of the consumer-genomics industry," Davies assures his reader, "every piece of marketing collateral, Web site real estate, and legal document bearing a company logo stressed and reaffirmed the strictly educational, nondiagnostic nature of their genome-scanning services."23 It is impossible to interpret this claim—by the DTC industry or by Davies—as anything but disingenuous. After conducting a clandestine investigation of fifteen DTC genetics firms, the GAO found that ten of them "engaged in some form of fraudulent, deceptive, or otherwise questionable marketing practices."24 What sort of fraudulent practices?  "Advertising for genetic testing on TV, in print, on the radio or via the internet," a recent British study concluded, "provide[s] simplistic explanations of genetics and exploit[s] existing anxieties and widespread misinformation about genetic determinism."25 A paper published in 2008 in the Journal of Business Ethics identifies the same trend: "there has been a tendency on the part of many diagnostic companies to downplay the probabilistic nature of genetic information and to use deterministic language in their physician- and patient-oriented advertising and promotional campaigns."26 Davies writes in the same determinist language, conflating cause and correlation without regard for the myths he thereby endorses.

And what of the medical utility of DTC genetics?  "The test results we received," the GAO investigation concludes, "are misleading and of little or no practical use to consumers."27 23andMe Director Ester Dyson, quoted by Davies, agrees: "[i]t's fascinating.  But medically useful? No."28 One wonders what role useless genetic tests have to play in "the new era of personalized medicine."  Remaining silent on this question, Davies maintains a legitimating façade of "personal" genetic knowledge; this is a paradox on the face of his text that irretrievably indicts its ultimate claim to legitimacy. In the same way, heeding well their legal counsel, every DTC marketing campaign is flush with fine print ceaselessly working to negate any claims made elsewhere. The DTC market that Davies describes is a contradiction: "[t]he explicit health claims and the small print disclaimers cannot both be true."29 Again, Davies fails to register what other observers see plainly. Occupying a nether region between naïveté and complicity, Davies accepts DTC's talking points sans reflection, parroting them back at his reader.  As such, his book is more akin to biotech puffery than explanatory prose.

The (pre)dominance of deterministic rhetoric in the public discourse surrounding genetic testing is worrying not simply because it is bad science. According to a 2010 study, "[p]ublic understanding of details pertinent to genetic testing generally appears to be weak."30 In this context, appeals to genetic essentialism in DTC marketing must be understood as intentionally misleading.  "Like its competitors, " Davies nevertheless claims, "Navigenics ... makes a good effort to communicate the dual role of genetics and environment ... in shaping individual risk of complex diseases."31 If this were so, it is certainly not reflected in their advertising, where disease "is portrayed as a unitary phenomenon, something that can be resolved by genetic testing and appropriate medical treatment." Thus a return to Jonathan Rothberg's seaside Stonehenge: the center of gravity for both DTC genetics and The $1,000 Genome is the myth of the genetic horoscope. Fine print aside, Navigenics and its competitors are "exploiting a climate of genetic determinism and public anxiety to sell speculative technologies."32 The $1,000 Genome's myopic stance toward these aspects of its subject signals its ultimate failing.  In the end, Davies is less concerned with the revolution of "personalized" medicine than he is with the astrological edifice constructed by those financial interests invested in the predictions of that revolution.   

 

Andrew D. Thibedeau, JD, is Senior Fellow at the Council for Responsible Genetics.


 
 
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