In The Postgenomic Condition, Jenny Roberts asks whether massive investments in genome sequencing have yielded meaningful knowledge. Her book presses important questions about what has really been gained from high through-put sequencing of strings of A, C, G, and T, and who has benefited from the genome project and its aftermath. More fundamentally, her target is liberalism in science and in bioethics; the volume is less about genomics than it is more generally about the business of contemporary science. Roberts asks telling questions, tells illuminating stories, and raises trenchant criticisms. Nonetheless, she comes perilously close to over-simplified attacks on technology, capitalism, and contemporary forms of science.
Roberts narrates significant events in genome sequencing to reveal failures in liberal democratic approaches to six core areas of concern: information, inclusion, the people, persons, property, privacy, and the public. Roberts structures each of the narratives to end with questions about whether the enterprise has been worthwhile. The questions are both a strength and a weakness of the volume; not always well-formed, they are often left frustratingly unanswered.
The “information of life” tells the story of the race to sequence the genome between public sector groups led by Francis Collins and corporate sponsors led by Craig Venter. According to Roberts, the race was overtaken by the technological power needed for efficient sequencing. Humans at the laboratory bench were replaced by sequencing machines and thus “many on the ground feared that genomics ushered in a technocratic and capitalist mode of producing information, one in which computer-run machines designed to increase speed and efficiency replaced humans who sought knowledge and justice.” In exchange for efficiency, Roberts opines, we got the industrialization of biology and instead of the free flow of information we got “the life of information.” (44) This dehumanization of science, Roberts contends, left “one central question…How can we know and act ethically in a world where life becomes information, information becomes capital, and capital is equated with freedom?” (27)
“Inclusion” narrates controversies over early efforts to ascertain whether there are significant genomic variations among population subgroups. Projects seeking to obtain genome information from isolated indigenous populations and then from racial and ethnic minorities in the United States were fraught with charges of exploitation and racism. Despite the rejection of biological bases for race, concerns remained over failures to include minorities in medical research. Amidst apologies for the Tuskegee syphilis study, the National Human Genome Research Institute (NHGRI) funded a major research project at Tuskegee on the genetics of heart disease. Although designed to address a major health problem of the area, the project soon failed in recruiting subjects. Concerns were the history of suspicion from the syphilis study, along with the charge that such an expensive genetics study would not address the health needs of an area of the country lacking effective access to even minimal emergency care. According to Roberts, technology was the other culprit: Tuskegee simply did not have the sequencing power needed for high powered genomic research.
Further issues attended efforts to increase diversity in genomic understanding internationally. In her case study of the international haplotype map (HapMap) assembly of genomes from different communities across the globe, Roberts describes difficult problems of community engagement and consent. To avoid any suggestion of discrimination, the HapMap sought to sample large, genetically variable populations. HapMap sponsors also sought to discuss issues and concerns with community members. At the point of constituting community, however, they foundered; the “people” of Japan, for example, were simply the Japanese population and there was no easy way to determine whether a small number of samples obtained from population members were in any way representative of genomes in Japan. Nor was there a political theory adequate to address questions such as who should be included in the HapMap, other than existing global political delineations themselves.
Some particular political delineations, however—Iceland, Estonia, and Scotland in particular—had taken up their own genome initiatives. These efforts proved paradoxical, on Roberts’ account. Iceland’s outright commercialization of the data of its residents through deCODE generated intense controversy over the assumption that genetic data should be treated as a natural resource. Roberts ends her description of Iceland’s deCODE with the observation that it “foreshadowed the crisis of value that would soon come to characterize the postgenomic condition” and with unanswered questions: “What kind of thing was the human genome, and who had the right to know and control it? A nation? A corporation? All humans” (99). Roberts then recounts how Iceland’s example of commercialization was not followed by Scotland. Generation Scotland (GS) attempted to assemble Scottish DNA for medically relevant research. While presented as a resource for Scotland, to be used by researchers in Scotland, GS found itself without sufficient local technological resources to perform the needed sequencing. But by the time GS recognized this problem, the infrastructure they had built to seek feedback from participants about use of their samples had been disbanded. Efforts to re-consent participants to the newer plans to send samples outside of Scotland foundered. The resulting reduction in available samples, compounded by the economic crisis in 2008, left GS with an apparently useless resource and, according to Roberts, these nagging questions: “in these postgenomic times, is there any ‘thing’ at all? If not, and we are unable to gather around a thing of clear value, should scientists and society proceed?” (118)
Roberts’ treatment of direct to consumer (DTC) genomics further illustrates the strengths and weaknesses of her book. Her case example is 23andMe, selected for its success and for its announced commitment to making individual genetic information available to the wider public. According to Roberts’ overall plan for the volume, the liberal value put to the test by this case example is property. Yet issues about data as property largely fade into the background of a wider critique of whether 23andMe creates knowledge. Roberts situates this debate in the context of the politics of knowledge more generally: “the debates over personal genomics make visible a broader contemporary struggle over how to constitute knowledge and justice in the midst of challenges to the credibility of dominant institutions, and investments in informatics as the new infrastructure for collective living and understanding.” (121-122)
As Roberts tells the story, the original vision behind 23andMe was research, specifically the assembly of sufficiently large data sets of genotype and phenotype information to understand the significance of genetic variants for Parkinson’s disease. Acquiring genetic material from saliva samples was the easy step; far more difficult was the enterprise of assembling sufficient phenotypical data to illuminate the significance of genetic variants. Roberts details how 23andMe created an engaging social media experience to encourage people to submit ongoing phenotypic information. On Roberts’ view, 23andMe portrayed itself as revolutionizing genetics by linking it to individual identity and freedom. However, it was in fact encouraging consumers to become patients-in-waiting as they “par[took] in biocapitalism” and paid to “play with [their] genome on the 23andMe website (128). Indeed, 23andMe belied its supposed democratization with its initially high price tag and appeals to computer-savvy “digerati.” When it was pushed out to wider populations, it attracted claims that the information it provided consumers was meaningless or potentially harmful; both the Food and Drug Administration and California regulators objected to any suggestion that the company was engaged in medical testing. These objections were bolstered by the observation that companies curated DTC information differently. Conflicts also emerged between supposedly more impartial academic science and corporate science. Roberts ends this discussion once again with a question, this time from life scientists: would the “science for the people” envisioned by 23andMe and the DTC movement enact the displacement of science “and the takeover by machines and their multinational corporations?” (143)
Roberts concludes her stories with case studies of privacy and justice. On privacy, she questions whether terms and conditions of receiving medical care should include sharing data for research. From her personal experience as a patient expected to share data at UCSF, Roberts segues to the Personal Genome Project (PGP), an effort based at Harvard to allow anyone interested to have their genome sequenced at a low cost and shared openly. The corporate benefit of the PGP was available DNA to develop faster and cheaper sequencing capabilities for do-it-yourself personal biology. The benefit to researchers was breaking what they saw as the bureaucratic over-regulation of medical research. The claim to openness was upfront acknowledgement that privacy in medical research cannot be guaranteed; even deidentified data bears significant potential for re-identification with a sufficiently rich data set. To be sure that participants were willing, PGP deliberately did not engage in recruitment; the result is a database that is almost exclusively white.
On justice, Roberts locates genetics at the epicenter of contemporary structural injustice. She contrasts the vast wealth of the UCSF Mission Bay campus and nearby commercial facilities such as the sequencing giant Illumina with the deep poverty of Hunter’s Point only a few blocks further south. Her concerns about justice reach far beyond whether minorities are benefiting from genetic medicine to whether it is justifiable to allocate massive investments to “big science” when clinics that provide basic preventive care to the poor lack funds. While Roberts is surely right to question the structural injustice furthered by investment decisions, targeting the genome project and the research infrastructure associated with it may be unfair; at most, investment in genome science is part of a larger picture of contemporary maldistribution. Relatedly, Roberts sees supposed efforts to democratize genomics by bringing in communities as ultimately undemocratic failures confront the full meaning of what is “in-formation” rather than informative. Roberts further questions the introduction of information technology into medical records, arguing that although some information of value may emerge, the benefits overall are less clear. Cooperation and transparency about medical information, she contends, has become the province of Salesforce and other data analytics firms rather than serving the individuals who have become subsumed and forgotten in biocapitalism. Instead, Roberts cites a suggestion from an African American group discussion of The Immortal Life of Henrietta Lacks: we might tag everyone’s biospecimens in a way that could enable them to log on and see how these specimens have been used (192).
So how should we move forward in the postgenomic world? Roberts has three central ideas. First, we must recognize that information is a source of power and turn this power back into the hands of people, not through more efficient consent forms but through the creation of conditions that give people effective control over the use of their bodily tissues (182). Here, we must recognize how money flows around information, not just with its use but in its production, curation, and storage. Roberts urges transparency about the environmental impact of data processing. We should make difficult decisions to move away from boutique “tailored” medicine (183) to investments that include us all. Roberts’ second idea is that to do this, we must invest, she says, in “institutions that support the arts of collective judgment.” (184). In so doing, we must reimagine what is possible and think about creating meaning beyond a biotechnical idea of health. We must, she says, “re-member” life. Third, we must bring justice in as a gathering concern, reconsidering its relegation to last place in the Belmont Report and liberal approaches to research ethics. Roberts concludes that, as publics, we must question the meaning of science and technology, link policy discussions to policy change, and keep at the forefront the relationship between innovation in science and technology and inequality.
Roberts admits that her view is highly programmatic and will need to be instituted differently in different contexts. As a non-ideal theorist, I fully agree. Yet she ends the volume with a mixed message about contemporary science. On one side is the need to reassert human control over technology. On the other side is pessimism about our ability to gain knowledge to further such reassertion. Here, Roberts asks “Under these conditions, how can anybody know what the public interest is and if it is being represented when one shares their data and DNA?” (201)
This final question struck me as primarily an expression of despair rather than an attempt to grapple with the substantive issues that it raises. Careful thinking about public interests in health information, including but not limited to genomic information, is sorely needed. In this regard, it is important to counter misunderstandings that foster genetic exceptionalism. Other health information, for example about infectious or environmental exposures, has implications beyond the individual to whom it immediately pertains. Neither protestation about technological imperatives nor insistence on individual ownership of health information is particularly useful in the effort to developed principled accounts of permissible (and even potentially obligatory) uses of health information. Instead, we need to consider injustices in current forms of collection and use of health information—including, as Roberts appropriately asks—whether to prioritize genomic information over information about social determinants of health, or how to integrate these and other forms of health information. We also need to consider how to move forward towards greater forms of inclusion in the pursuit of health justice that respect all concerned. As one example, we must consider when it is unjust to make use of data from or about individuals (and, importantly with big data, these are not the same) if these uses fail to benefit or even harm the individuals concerned. As another, we need far more work on the obligations of data users to data sources and sharers, even in circumstances in which efforts to gain useful knowledge flounder.
Much remains to be asked and learned about the genome project. Roberts’ book is in some respects an illuminating start but it leaves largely unaddressed the critical questions about justice that she asks.
University of Utah
Salt Lake City, Utah