a- tese - vida bio digital

14
Access Provided by CAPES-Fundação Coordenação de Aperfeiçoamento de Pessoal de NÃ-vel Superior at 10/10/11 6:26PM

Upload: lidiane-carvalho

Post on 06-Sep-2014

18 views

Category:

Documents


1 download

TRANSCRIPT

Page 1: A- Tese - Vida Bio Digital

Access Provided by CAPES-Fundação Coordenação de Aperfeiçoamento de Pessoal de NÃ-vel Superior at 10/10/11 6:26PM GMT

Page 2: A- Tese - Vida Bio Digital

Biography 34.1 (Winter 2011) © Biographical Research Center

WRITING BIODIGITAL LIFE:PERSONAL GENOMES AND DIGITAL MEDIA

KATE O’RIORDAN

There has been a boom in writing by scientists, journalists, and media fi gures that takes up human genomes as a technology of life story. Research proj-ects that generate personal human genome sequences and the emergence of direct-to-consumer genome scanning services together have generated these tales from the genome. One example is Harvard psychologist Steven Pinker’s New York Times article “My Genome, My Self,” which narrates his experience of whole genome sequencing with the Personal Genome Project: “Last fall I submitted to the latest high-tech way to bare your soul. I had my genome se-quenced and am allowing it to be posted on the Internet, along with my medi-cal history.” Another protagonist in this project is Misha Angrist, who has just published his autobiographical account Here is a Human Being at the Dawn of Personal Genomics. Angrist also casts himself as an explorer looking into the future at the dawn of a new era. The executive editor of Wired magazine, Thomas Goetz, wrote his autobiographical account of genome scanning with the California company 23andMe. Subtitled “Welcome to the Age of Genom-ics,” Goetz also sees himself as looking into the future of medicine. UK jour-nalist Nic Fleming’s account of his experience with multiple scanning services, in contrast, casts himself as a detective investigating these companies.

Human genome sequences are generated through highly abstract compu-tational processes, which can then translate into accessible dimensions of life story. Genome information is viewed through browsers and circulated as In-ternet text in the coming together of human sequence information and digital media cultures. It has become a technology of stories about genetics, health, and behavior, but also about being part of a cutting-edge elite, looking into the future, exploring new domains, and investigating the claims of genomics.

In the 1990s, the global “big” science Human Genome Project produced a single human genome sequence. The project took thirteen years to complete,

12ORiordan.indd 11912ORiordan.indd 119 7/13/11 9:49 AM7/13/11 9:49 AM

Page 3: A- Tese - Vida Bio Digital

120 Biography 34.1 (Winter 2011)

and involved thousands of people. The completion of the draft in 2000 was announced through a joint USA-UK press conference in which the genome was framed as the “book of life” and God’s language (Nerlich, Dingwall, and Clarke). This singular project was framed as a marvelous spectacle that prom-ised to tell the story of human life. One way in which this promise has been delivered is through the development of testing for genetic conditions, which has provided individuals with forms of diagnosis and with health-related di-mensions of biography.

In the ten years since the completion of the Human Genome Project draft, the direction of genomic research has shifted towards the generation and analysis of multiple genomes. This orientation has generated an almost explosive proliferation of genome sequencing and scanning. Accompany-ing these sequences are the biographies and autobiographies of the people to whom they are attached. Currently these attachments are to celebrity-scientists, journalists, and other media fi gures, and genomic life stories can be characterized as the preserve of an elite and largely male authorship. There are strong connections between the dynamics of these contemporary genomic life stories and those examined in Maureen McNeil’s work on the heroes and autobiographies of genomic science, particularly in regards to their gender dynamics. Like James Watson’s famous biography The Double Helix, con-temporary stories present techno-scientists as ordinary guys who are access-ing incredible new knowledge forms. While there are prominent interven-tions in genetic life writing by women—for example, Masha Gesson’s Blood Matters and Alice Wexler’s Mapping Fate—these accounts are of women who have turned to genetic testing in a quest for self knowledge. The celebrity ge-nomic biographies and autobiographies under examination in this article are interested fi rst and foremost in genomic knowledge production. These works provide a promotional culture for genome sequencing and scanning services by highlighting them in the press and in popular science writing. By offer-ing a point of identifi cation with the protagonist, this publicity constructs genomes as an elite luxury, while at the same time promising an imminent mass market. Although the human genome was framed as the book of life, and sequencing is framed as a matter of life and death (O’Riordan), genomic life stories are actually closer to a matter of life style.

At one and the same time, the form of these genomic life stories is highly mediatized and very intimate. The stories appear in both general newspapers and the technology press, and are as associated with blogs, columns, book deals, and TV programs as with genomic research. Genomic life stories are supplemented by the public circulation of genome sequences, scans, or test in-formation, which become the object for producing the story. For example, an online open access repository called Promethease provides a publicly available

12ORiordan.indd 12012ORiordan.indd 120 7/13/11 9:49 AM7/13/11 9:49 AM

Page 4: A- Tese - Vida Bio Digital

O’Riordan, Writing Biodigital Life 121

form of comparative analysis. In what has become a convention, sequences generated by suppliers such as the Personal Genome Project, 23andMe, and DeCodeMe are voluntarily deposited at this site for public circulation. To date, Promethease houses fi fty-fi ve human genomes.

In this article, I sketch out the general terrain of biodigital life writing, while focusing on some individual stories. I outline the shift and proliferation from singular genome to multiple genomes over the last decade, and high-light the contradictory features of intimate publicity at this interface between personal genomes and digital media.

SHIFT AND PROLIFERATION

Caroline Bassett argues that digital communication technologies created an explosion in narrative in the 1990s. Through the take up of Internet technol-ogies, storytelling has proliferated, and personal home pages and blogs extend beyond the measurable. As Marie-Laure Ryan puts it, avatars of story popu-late virtual worlds. Digital storytelling practices abound through the circula-tion of video, photos, animations, and slide shows. In this milieu, individual genome sequences have created an expansion in genomic forms of biography, and have added to a culture of expectation about the capacity of genomics to story not just “life itself” (Franklin 188), but individual lives.

Personal genomics signals a comparably expansive moment in which ge-nomes proliferate, and with them life stories. At the start of the twenty-fi rst century, there was one human genome and it took thirteen years to sequence. Ten years on, it takes three weeks to sequence a genome, and although the number of complete human genome sequences is only in the hundreds, the number of personal or direct-to-consumer (DTC) genome scanning services is growing. These services can also be thought of as narrative machines. They present sequence information in relation to narratives about health, behavior, and ancestry. In 2009 one of those companies, 23andMe, announced that it had scanned 30,000 genomes. Though primarily confi ned to a technocratic elite, the production of genomes is exponential, and with these scans come genomic life stories created through the take up of these informational stories by those implicated in them. Celebrities have led the way in producing these highly visible genomic biographies. Genomes don’t just produce any kind of story however. As signs of life, they add biological dimensions to life stories—biographies and autobiographies—of both those who produce the sequences and those from whom sequences are extracted. These biological dimensions bring with them emotional attachments that can shock, as well as resource, a sense of self. However, the dominant characteristic of these genomic life stories is not the biological shocks to the sense of self but the capacities of

12ORiordan.indd 12112ORiordan.indd 121 7/13/11 9:49 AM7/13/11 9:49 AM

Page 5: A- Tese - Vida Bio Digital

122 Biography 34.1 (Winter 2011)

genomics to cast the protagonists as explorers of a new era. Refl ections on the vulnerability of lives, and dilemmas about which information to get back, are captured in these stories. Steven Pinker decides, for example, to refuse the in-formation about whether he has a gene that increases the chance of Alzheim-er’s. The capacity of the writer to adjudicate on the value and interpretation of genomic knowledge thus takes center stage in these tales.

In tandem with this proliferating circulation of genomes, the storytelling capacity of genomics in general has shifted, from the scale of the universal to the personal. In the 1990s, the Human Genome Project was a story about a universal genome composed of genes and behaviors or conditions, manifested in gene discovery stories. By the end of this project, the mapping of the ge-nome was framed in universal terms as the code or book of life—as God’s lan-guage (Franklin, Nerlich et al., Roof). This universal and singular human ge-nome, although drawn from multiple individuals, produced a rather abstract story as the reference sequence for all of humanity. Although singular and dra-matic, the human genome story had too much meaning to make much sense. It produced stories about genes, about sequencing technology, and about the processes of science. It was also a drama about scientists and nations. Genome mapping was cast as a race between the public service-oriented British scientist embodied by Sir John Sulston, and corporate US science, embodied by Craig Venter (McNeil). These dramas populated the genomic imaginary during the 1990s and early twenty-fi rst century. But once this map was announced as complete, this also fi nished the story of the singular universal genome. The story of the genome map moved into a new era—what Jenny Reardon calls the post-genomic condition, in which some of the overarching questions are about genomic sense-making, profi tability, and governance.

Genomic life stories are part of this genomic sense-making, as they inter-pellate intimate publics in this project. There is a collapse between the produc-tion and consumption of genomic life stories, via the intimacy of the body, because leading fi gures in the production of these genomes also self-produce their own genomes. Through their engagement in the form, those from whom genomes might be said to be extracted also become the author of their own genomic biographies. So, for example, George Church, founder of the Person-al Genome Project, a very high-end research-oriented full-sequencing service, used his own genome as part of the project. Craig Venter, a leading fi gure in the mapping of the human genome, and one of Time Magazine’s “Time 100” list of the most infl uential fi gures in the world in 2007, published his genome sequence in the same year—along with his autobiography A Life De-Coded: My Genome, My Life. Following Venter, James Watson, one of the people who contributed to the discovery of the double helix structure of DNA in the 1950s, and a leading fi gure in the Human Genome Project, became the

12ORiordan.indd 12212ORiordan.indd 122 7/13/11 9:49 AM7/13/11 9:49 AM

Page 6: A- Tese - Vida Bio Digital

O’Riordan, Writing Biodigital Life 123

second person in the world to publish his genome sequence online in 2007. Watson had already provided a much earlier innovation in genetic autobiog-raphy, in 1968, by publishing the crossover popular science-personal memoir The Double Helix: A Personal Account of the Discovery of the Structure of DNA.1 Leading fi gures in the genome sciences, and signifi cant investors in genome se-quencing, now publish genomic biographies together with their own genomes online. This doubling of biography through memoir and genetic sequence has become a defi ning feature of this area. Steven Pinker’s “My Genome, My Self” demonstrates the celebrity-scientist end of this spectrum of stories. As we shall see, Pinker’s narrative also demonstrates why it is diffi cult to take this kind of biodigital life writing on its own terms, and points to some contradic-tions and trouble ahead in the take up of these forms.

LIFE STORIES

Genetics is ineluctably representative of life itself. However, in the move from the universal to the personal, and from the singular to the multiple, genom-ics has been taken up as a life-style technology of individual biography and autobiography. The high-end global celebrity scientist stories of Craig Venter, Stephen Pinker, James Watson, and George Church have their correlates in journalism, and in the broad media dissemination of tales of celebrities who have had DTC genome scans and published their stories as part of their me-dia celebrity performance (O’Riordan).

In the UK, these autobiographical tales from media and journalism in-clude Virginia Ironside, John O’Connell, and Nic Fleming. In each case, the journalist had tests or genome scans, and gave an autobiographical account of the process, the results, and the overall experience. In 2007, the UK’s The Kill-er in Me also televised four media fi gures in the process of having genetic scans, reporting on the dilemmas, results, and reactions. The program followed for-mer GMTV presenter Fiona Phillips, former England footballer John Barnes, then Heart FM disc jockey Toby Anstis, and former newspaper editor and presenter Andrew Neil “as they undertake a one stop DNA test to fi nd out which common killers could be hidden within their genes” (“Killer”). The eponymous “killer” referred to the possibility that a life-threatening disease might be revealed lurking in the genome of one of the participants. The dra-matic framing attaches “me” to the genome, creating a biographical presenta-tion of the lives of the four media fi gures. It also introduced genetic testing as an everyday technology of both life history and future story in the UK.

While leading fi gures in biotech worlds circulate their own sequences, those from who genomes are extracted also become the authors of their own genomic biographies. This practice incorporates leading fi gures from other

12ORiordan.indd 12312ORiordan.indd 123 7/13/11 9:49 AM7/13/11 9:49 AM

Page 7: A- Tese - Vida Bio Digital

124 Biography 34.1 (Winter 2011)

domains into genomics. Thus Steven Pinker, a prominent psychologist, was included in the fi rst round of George Church’s Personal Genome Project. Af-ter Pinker’s genome sequence was produced, he wrote an extended autobio-graphical article for the New York Times, “My Genome, My Self,” echoing Venter’s title “My Genome, My Life.” In this piece, Pinker invoked the ge-nome sequence as a biographical technology: “Last fall I submitted to the latest high-tech way to bare your soul.” Drawing on his own expertise in psychology, he told a story about genomics with some forays into the infor-mation that his sequence threw up:

The two biggest pieces of news I got about my disease risks were a 12.6 percent chance of getting prostate cancer before I turn 80 compared with the average risk for white men of 17.8 percent, and a 26.8 percent chance of getting Type 2 diabe-tes compared with the average risk of 21.9 percent.

In relation to the region of the genome that indicates a likeliness of Alzheim-er’s, Pinker reported that his “current burden of existential dread is just about right,” and vetoed this information. He discovered that he carried a gene that could have dehabilitating effects on future children, but he reported that this wasn’t relevant to his path in life. In relation to ancestry, Pinker was much more enthusiastic:

It’s thrilling to fi nd yourself so tangibly connected to two millenniums of history. And even this secular, ecumenical Jew experienced a primitive tribal stirring in learning of a deep genealogy that coincides with the handing down of traditions I grew up with.

This move into an affective register is rare, however, and although the arti-cle goes through his own probability for disease, ancestry, and behavior, the story provides more of a model as to how to deal with genomic information through Pinker’s example. Pinker provides a rich discussion of different kinds of genomics and the limitations of genomic information. He returns to psy-chology throughout as a way of knowing, and also points to other interpreta-tive frames and factors, including family history, complexity, concepts of will and individualism, and determinism. His story is an account of himself as an expert, placing him as the ideal genome reader, and inviting other readers who are “bitten by scientifi c or personal curiosity and can think in probabili-ties” to enjoy the fruits of personal genomics.

This strategy could be thought about in terms of a trading zone between psychology and genomics (Galison), where expertise is traded between two powerful scientifi c subcultures to produce the power to story life in the con-temporary world. In his autobiographical article, Pinker develops the tropes

12ORiordan.indd 12412ORiordan.indd 124 7/13/11 9:49 AM7/13/11 9:49 AM

Page 8: A- Tese - Vida Bio Digital

O’Riordan, Writing Biodigital Life 125

of democratization, already present in the Personal Genome Project’s aims, by explaining that personal genome sequencing takes access to DNA away from the hands of the “white coated priesthood” and gives it to anyone who can afford “the price of a fl at screen TV.” He also reiterates the metaphors of the “code of life,” likening genome sequencing to the internet:

Like the early days of the Internet, the dawn of personal genomics promises ben-efi ts and pitfalls that no one can foresee. . . . With the genome no less than with the Internet, information wants to be free, and I doubt that paternalistic measures can stifl e the industry for long.

On the one hand, Pinker uses his genome sequence as a technology for auto-biography: the title of the article frames self as genome and vice versa. On the other hand, he does not confl ate self with his genome in the detail of the argu-ment, and in fact actively resists this confl ation. He tells his readers that some of the information from his genome sequence is helpful in the “know thyself” project, but he cautions against using genome sequencing too fully as a form of self knowledge, noting that “It’s still a messy science, with plenty of false alarms, contradictory results and tiny effects.” He suggests that a skeptical and widely resourced reader of genome sequences is one suffi ciently qualifi ed to “enjoy the fruits of personal genomics” by contextualizing it. Pinker shows how several of his own resources, including psychology, seventeenth century French literature, and statistics, construct this ideal informed subject of ge-nomic autobiography. This use of genomics as the technology of story char-acterizes these tales, while at the same time the reader is cautioned against ge-nomic reductionism or essentialism. This move could be thought of in terms of the production of genomic cultural capital, where the expertise needed to be a genome reader is constructed and defi ned by those who tell these stories.

The move from the universal human genome to individual genomes via a technocultural elite has three dimensions. It simultaneously produces more genomic data, promises to make this genomic data more meaningful, and creates new markets for genomics. This move opens up a consumer inter-face with human genomics, and invites people into the process of telling in-timate stories from the genome. However, even while extending this invita-tion, genomic life stories remain a highly elite form. About the time Pinker referred to “the cost of a fl at-screen TV,” the service with which he engaged sold its sequencing commercially for approximately £63,000. This would buy a very high-end fl at screen television indeed. Other genome scanning ser-vices provide a much more limited version of the sequence information for around £300 (23andMe ). Given that these latter services are prefi gured as lacking medical relevance, this becomes a life-style expenditure on interesting

12ORiordan.indd 12512ORiordan.indd 125 7/13/11 9:49 AM7/13/11 9:49 AM

Page 9: A- Tese - Vida Bio Digital

126 Biography 34.1 (Winter 2011)

information, rather than a medical health cost, and as such £300 might be a lot to throw around.

There are two diffi culties in understanding Pinker’s story on its own terms. First, the oscillation between genomic determinism on the one hand and the imperative to represent genomic information as contingent and com-plex on the other creates problems for the intelligibility of genomics. Second, the reconstruction of an elite identity for the genomic author provides an in-ternal contradiction to that of the promise to take genomics out of the hands of a “priesthood,” because Pinker’s own position and his autobiographical voice re-instantiates precisely this kind of clerical elite. While such modes of translation may be very valuable, the rhetorical use of openness and democra-cy in relation to genomic information appears to cover over the construction of an elite class of genome readers. At the same time, this story constitutes the promotion of a product, which although fun and interesting, has little in the way of value and rather a lot in the way of problems. It is contradictory to be in the business of offering consumers genomic dimensions to their iden-tity while modelling a cautionary tale that only those in the know are in a position to interpret this information. Although Pinker comes close to mak-ing these contradictions visible, the casting of genomics as a “candidate for the real answer” casts a rather overwhelming shadow of genomic enthusiasm over the careful deconstruction “scholars of autobiography and memoir have long recognized”: “None of us know what made us what we are, and when we have to say something, we make up a good story. . . . An obvious candi-date for the real answer is that we are shaped by our genes in ways that none of us can directly know.”

MORE TALES FROM THE GENOME

In a 2001 interview with Maggie Fox, Health and Science editor for Reuters, Eric Lander, one of the fi rst authors on the Human Genome Map, declared, “I don’t know if people realize that we just found the world’s greatest history book. We are going to be up every night reading tales from the genome. It’s so cool.” The framing of the genome as a book, text, or code has been a domi-nant characteristic of gene talk (Roof, Nelkin and Lindee). However, its ca-pacity to be a technology of story has previously been limited by the available protagonists about whom tales could be told. In theory, on the basis that the genome mapped a universal humanity, tales from the genome could be about anyone and everyone. However, it quickly became apparent that only specifi c identities, such as populations and patients, could be incorporated in the tales from the singular human genome. For example, newly discovered genetic conditions like Ataxia, and thus new patient identities and patient groups,

12ORiordan.indd 12612ORiordan.indd 126 7/13/11 9:49 AM7/13/11 9:49 AM

Page 10: A- Tese - Vida Bio Digital

O’Riordan, Writing Biodigital Life 127

were among the subjects that emerged from the genome in the 1990s. The discovery of single gene disorders and the medical testing regimes attached to them are, I would suggest, of a different order of knowledge production to these new commercial interfaces with genomics. The Human Genetic Diver-sity Project, the Human Haplotype Map, and the 1,000 Genomes projects are all attempts, along with personal genomics, to get more specifi c about who the tales from the genome are about and to expand the “we” who are the read-ing public for genomics.

Personal genomics, by putting the person into the genome while publish-ing genomes, creates a new fi eld of biographical and autobiographical tales from the genome. The bodily samples and tissues required to render genomes personal are part of the intimacy of this expansion of publics. Cheek cells from saliva and blood are two of the preferred genome sources. The intimate insertion of individual bodies and personal specifi city can be read off the titles of services in this area. 23andMe provides consumers genome scans de-rived from saliva, while trying to leverage the information gathered as useful for biomedical research. Its title puts the twenty-three human chromosomes together with “me”—the protagonist of the genome sequence it delivers. De-CodeMe works on the same linguistic basis, and with the same cells. Arising from DeCode Genetics, a company based on the privatization of the Icelandic Health service database (Rose), it added an international personal genome scanning service, and added “me” to its play on people as decodable subjects. Knome, the private company attached to George Church’s Personal Genome Project, through which Stephen Pinker’s genome was scanned, is pronounced “know me”—and they require blood. The Personal Genome Project also puts the singular person in the genome. Multiple services and research ventures now operate in this same mode of address, where possessive and personal pro-nouns are coupled with genomes derived from tissue samples.

This address is both produced and taken up by the celebrity scientists who are involved in developing the sequencing technologies and in generat-ing genomic meaning in the sciences, including George Church, Craig Ven-ter, and James Watson. At the same time, it is also taken up by journalists and other media fi gures in both general interest areas and in special technology or health sections. Wired ’s Thomas Goetz, for example, used the 23andMe genome scanning service, and wrote an article about the experience in his own magazine. He also published a non-fi ction science technology and health book, The Decision Tree: Taking Control of Your Health in the New Era of Per-sonalized Medicine.

Goetz’s Wired article, “23andMe Will Decode Your DNA for $1,000. Wel-come to the Age of Genomics,” explores a variety of issues about genomic re-search, reviews the state of the fi eld, and discusses the key players in the USA. It

12ORiordan.indd 12712ORiordan.indd 127 7/13/11 9:49 AM7/13/11 9:49 AM

Page 11: A- Tese - Vida Bio Digital

128 Biography 34.1 (Winter 2011)

also contexualizes genomics in terms of personalized medicine more generally. The article is topped and tailed by stories about Goetz’s own medical health, family information, and the results of his 23andMe genome scan. He opens the piece with a story about three generations: his grandfather, his father, and him-self. “At the age of 65,” he begins, “my grandfather, the manager of a leather tannery in Fond Du Lac, Wisconsin, suffered a severe heart attack.”

The last section of the article relates the family heart attack story back to Goetz’s genome scan:

My risk for heart disease may be lower than average, but that doesn’t mean my ge-nome isn’t primed for problems. Far from it. Variations of three SNPs double my risk for prostate cancer, leaving me with a 30 percent chance of developing it in my lifetime.

Goetz’s semi-autobiographical article welcomes readers to the age of genom-ics, and demonstrates the features of recursivity, biodigitality, and elitism that characterize the form. Goetz also touches on vulnerability and mortality—he is reassured that his genome seems to be telling him that he is not as likely to have problems with heart disease as his grandfather and father before him. Goetz describes the experience of genome scanning as “simultaneously unset-tling, illuminating, and empowering.” His story also demonstrates the dou-bling of publicity that occurs in the personal-public address of genomics as both promoting, in a commercial sense, and extending out to a civic public, in a political sense. Contained within this piece are similar contradictions to those found in Pinker’s story.

All life writing is recursive in the sense that it refers back to and draws upon the life that it narrates. Genomic life stories are endlessly recursive tales that loop through a series of tellings about my genome, myself, my life, and my genomic life writing. At the same time that Goetz and other elite story-tellers distance themselves from the collapse of life into genome, they deploy genome scans as a life storying technology, reiterating a kind of genetic der-minism. For example, Goetz fi nishes his article with the knowing disavowal of the collapse of genomics into life. A genome scan “is one more factor re-vealed, an instrument suddenly within reach that can help us examine, and perhaps improve, our lives.” At the same time that Goetz moves away from completely centering genomics, taken as a whole, his story recursively draws back on 23andMe and genomics as the determining agents. We have already been told that they will decode our DNA, and we are welcomed into the “age of genomics” by Goetz’s genomic life story. At the same time, his disavow-al of genomics as collapsible to life exhibits his own qualifi cations to make meaning from genomic information.

12ORiordan.indd 12812ORiordan.indd 128 7/13/11 9:49 AM7/13/11 9:49 AM

Page 12: A- Tese - Vida Bio Digital

O’Riordan, Writing Biodigital Life 129

Goetz draws on the trope of empowerment that dominates the personal genomics fi eld, and looks to the consumer interface to provide access: “The advent of retail genomics will make a once-rare experience commonplace.” Shopping, the reader is told, will make elite technologies common. This ap-peal to democratization via commerce draws on concepts of purchasing pow-er, free markets, and trickle-down models of distribution, part of a common-sense assumption that consumption is almost the same as biocitizenship—an assumption Pinker echoes in his comparison between the cost of fl at screen televisions and genome sequences. Like Pinker, however, Goetz is part of a technocultural elite, and this also defi nes his life story. “Anyone” may be the subject of personal genomics, but this is qualifi ed by the addition of a $1,000 price tag and a reference to “early adopters.” Goetz simultaneously opens the specter of the mass market through the reference to “anyone,” and closes it down by publishing the story in Wired, by referencing the cost of the scan, and by interpellating the reader into the “early adopter” subject position of technocultures. The construction of this position, in the shadow of impend-ing mass market technology, sets Goetz up as another kind of priestly fi gure, prophesying a future for his readers.

In constructing genomic empowerment, Goetz points to the same key factors of statistics and probability as Pinker. They both deal with the puzzle of empowerment versus determination by drawing on genomic information as part of a process of assessing odds, risks, and probable chances. Pinker tells us that in some rare cases genetic determinism is right; the gene for Hun-tington’s causes Huntington’s disease. However, in almost all other cases, for both Pinker and Goetz, complexity and probability characterize genomics, under whose advent “we have stumbled into a far more arduous calculus, one requiring a full arsenal of algorithms and vectors. It’s a more powerful tool—but it’s also a lot more complicated.”

DECONSTRUCTING BIODIGITAL LIFE WRITING

While genomes are a technology of story, they are not by themselves sto-ries. Genome sequences or scans have to be narrated through annotation, commentary, interpretation, and explanation, in relation to the life of the protagonist. In this sense, they might be thought of as paradigmatic to the syntagm of biography; that is, they make up the elements that produce the story, but they are not storytellers. To borrow further from Caroline Bassett, they could be said to be part of a narrative arc that fl ows from the bodies of people being sequenced and back again. It is these narratives, rather than the sequence information, that provide the tales from the genome. In the sense that they narrate the self, they are recursive or autobiographical, but they are

12ORiordan.indd 12912ORiordan.indd 129 7/13/11 9:49 AM7/13/11 9:49 AM

Page 13: A- Tese - Vida Bio Digital

130 Biography 34.1 (Winter 2011)

also replaceable. Biomedical signs are always productive of biography, but the kinds of signs that can be used to write this life change over time. Blood, genes, and genomes have historically fi gured as the sign of life (Roof 171). Currently bioinformatic genomes, with their constituent DNA and genes and digital form, are ascendant as the new material for biography-making.

This biodigital life writing, in the form of accounts of interactions with digital genome scans, cuts across multiple media forms. My contextual analy-sis here of fragments of these accounts focuses on some of their contradictions. The centrality of “me” as the protagonist in current tales from the genome sig-nals a kind of publicly intimate consumer interface for genomics, demanding the circulation of autobiography in the milieu of digital media. This interface is one at which a critical engagement with human genomics might proceed. As the constitution of intimate digital publics supplements the unfocused marvel of the double helix with an interactive focus on the genome and me, the con-tradictions in genomic narratives ironically become more apparent.

To date, these stories are authored by fi gures who promise to democra-tize genomics. At the same time they display their own elite qualifi cations to make meaning from genomes. However, the progression of an expanded reading public for genomics may be impeded by the contradictions already signaled. If genomics is only one more tool in an array of ways of knowing about human lives, why should people be persuaded by its expository powers, and spend time and money on the production of more and more genomes? Equally, if genomics is complex and needs to be carefully contextualized with specialist knowledge, why should the promise of democratization have ap-peal? The contradictions of these biodigital life writings could pose problems for the creation of a mass market in sequencing and genomic life storying be-cause they evoke such opposing expectations. This might be more liberating in the end than for genomics to become the story of our lives.

NOTES

1. For further analysis, see McNeil.

WORKS CITED

Angrist, Misha. Here Is a Human Being: At the Dawn of Personal Genomics. New York: Harp-er, 2010. Print.

Bassett, Caroline. The Arc and the Machine: Narrative and New Media. Manchester: Man-chester UP, 2007. Print.

Flemming, Nic. “Rival genetic tests leave buyers confused: Firms that offer to predict your risk of disease give worryingly varied results.” Sunday Times. Times Newspaper, Ltd., 7 Sept. 2008. Web. 15 Apr. 2011.

12ORiordan.indd 13012ORiordan.indd 130 7/13/11 9:49 AM7/13/11 9:49 AM

Page 14: A- Tese - Vida Bio Digital

O’Riordan, Writing Biodigital Life 131

Fox, Maggie. “First Look at Human Genome Shows How Little There Is.” Reuters.com. Reuters Group, 1 Feb. 2001. Web. 15 Apr. 2011.

Franklin, Sarah. “Life Itself: Global Nature and the Genetic Imaginary.” Global Nature, Global Culture. Ed. Sarah Franklin, Celia Lury, and Jackie Stacey. London: Sage, 2000. 188–227. Print.

Galison, Peter. Image and Logic: A Material Culture of Microphysics. Chicago: U of Chicago P, 1997. Print.

Gesson, Masha. Blood Matters: From Inherited Illness to Designer Babies. How the World and I Found Ourselves in the Future of the Gene. New York: Mariner Books, 2009. Print.

Goetz, Thomas. The Decision Tree: Taking Control of Your Health in the New Era of Personal-ized Medicine. New York: Rodale, 2010.

———. “23andMe Will Decode Your DNA for $1,000. Welcome to the Age of Genomics.” Wired Magazine 15.12 (11.17.07): n. pag. Web. 18 Apr. 2011.

Ironside, Virginia. “DIY Genetic test: I want to know the worst.” The Independent 6 Nov. 2007. Web. 15 Apr. 2011.

“The Killer in Me.” ITV.com. ITV plc., n.d. Web. 18 Apr. 2011.

McNeil, Maureen. Feminist Cultural Studies of Science and Technology. Reading: Routledge, 2007. Print.

Nelkin, Dorothy, and Susan Lindee. The DNA Mystique: The Gene as Cultural Icon. New York: W. H. Freeman, 1996. Print.

Nerlich, Brigitte, Robert Dingwall, and David Clarke. “The Book of Life: How the comple-tion of the Human Genome Project was revealed to the public.” Health 6.4 (2002): 445–69. Print.

O’Connell, John. “Playing doctors and nurses.” The Observer. Guardian News and Media Ltd., 25 Nov. 2007. Web. 19 Apr. 2011.

O’Riordan, Kate. The Genome Incorporated. Reading: Routledge, 2010.

Pinker, Steven. “My Genome, My Self.” New York Times Magazine 7 Jan. 2009: MM24. Print.

Reardon, Jenny. “The Postgenomic Condition: Technoscience at the Limits of Liberal Dem-ocratic Imaginaries.” Klopsteg Seminar Series in Science in Human Culture. North-western U, 8 Feb. 2010. Lecture.

Roof, Judith. The Poetics of DNA. Minneapolis: U of Minnesota P, 2007. Print.

Rose, Hillary. “The Commodifi cation of Bioinformation: The Icelandic Health Sector Da-tabase.” London: Wellcome Trust, 2001. Print.

Ryan, Marie-Laure. Avatars of Story. Minneapolis: U of Minnesota P, 2006. Print.

23andMe. 23andMe, Inc., n.d. Web. 18 Apr. 2011.

Venter, Craig. A Life De-Coded: My Genome, My Life. London: Viking, 2007. Print.

Watson, James. The Double Helix: A Personal Account of the Discovery of the Structure of DNA. 1968. New York: Touchstone, 2001. Print.

Wexler, Alice. Mapping Fate: A Memoir of Family, Risk, and Genetic Research. Berkeley: U of California P, 1996.

12ORiordan.indd 13112ORiordan.indd 131 7/13/11 9:49 AM7/13/11 9:49 AM