Rosario Isasi examines a study on the societal impact of grand sequencing projects.
The Postgenomic Condition: Ethics, Justice, and Knowledge After the Genome
By Jenny Reardon
Jenny Reardon's The Postgenomic Condition aims to reconcile innovation in genomics with justice and democracy. Looking at two decades of genomics advances, she asks hard questions about whether developments such as personalized medicine have had a truly democratizing impact. Reardon uses worst-case scenarios to demonstrate the complexities of human genomics and bioethics in the broader sociopolitical and global context. These are science stories construed as cautionary tales, strategies for anticipating, managing and mitigating risks.
Reardon, a sociologist at the University of California, Santa Cruz, draws on more than a decade of fieldwork in start-ups, labs and government agencies for her robust and enlightening analysis of the Human Genome Project (HGP) and its aftermath. She covers its broad societal impact, from wider inclusion of minorities in research to the expansion of rights and obligations arising from sharing human samples and data. The titular postgenomic condition, she argues, began when genomics became a focus of “turn-of-the-millennium hopes for justice through data and democracy”. With the emergence of a genomics that was “participatory, inclusive, and open”, sequencing data acquired meaning and value.
Her narrative begins in the early 1990s. The HGP was followed by the launch of other efforts, including the Human Genome Diversity Project, the International HapMap Project, the Icelandic company deCODE genetics and Generation Scotland, a national biobank of donated tissue. Reardon chronicles the rise in the 2000s of personal-genomics projects and companies, such as 23andMe, the Personal Genome Project, the medical-data-sharing initiative Open Humans and the world of do-it-yourself biology, including the community DIYbio.org. Thus, she traces the shift of genomic research to a more participatory and diverse venture that ultimately transformed conceptualizations of self-governance and privacy. Open-consent models, for instance, have changed the agency of consent “from what individuals let researchers do to their data to what individuals do with their data”.
Reardon lays out a bold vision for genomics's potential. She probes the value of the human genome from a utilitarian perspective, contending that human DNA and data constitute the raw resource of our times: a commodity whose value is to be quantified as biocapital. Thus, the postgenomic condition is about using information and knowledge as the currency from which to build a “genomics that is of, for, and by the people”.
She argues, however, that reality so far does not match that aim. She says that she doesn't want to cast players as heroes and villains, but she does — albeit skilfully and with considerable nuance. She suggests, for instance, that a free society profiting financially from the DNA of its citizens leads to “the corporate corruption of science”. For her, genomics is an arena in which the aim of understanding human diseases vies with the aim of settling “disputes over property, identities, and resources”. Reardon highlights the tensions between inclusion and exclusion, transparency and obscurity, freedom and control — and, finally, integrity and public interest.
She starkly criticizes the US Precision Medicine Initiative, a long-term, large-cohort study led by the US National Institutes of Health to develop prevention and treatment strategies that factor in individual variability in genes, environment and lifestyle. She views it as a public-relations approach to managing research participants, offering what might seem innovative ideas to “make them want to comply”. She delves, too, into complex cases such as that of Henrietta Lacks, whose cervical tumour was used to create the HeLa cell line without her consent (see Nature http://doi.org/kzq; 2013).
The book concludes with a vague proposal for a national commission to revisit the 1979 Belmont Report, the US federal report on ethical guidelines for research involving humans. Although Reardon's personal approach to the narrative is appealing, she only sparsely addresses the sociocultural and historical factors that shape genomics initiatives, and largely leaves out any analysis of the national policy frameworks that govern them. Her frequent reliance on political theory, particularly the works of Hannah Arendt, could also render the book inaccessible to a wider audience.
Reardon's underlying message is one of disappointment. She believes that genomics has enormous beneficial potential, but sees the human genome as a currency that so far has been deprived of value because, she alleges, of a lack of medical breakthroughs resulting from it. This is the major shortcoming of the book. As a storyteller, Reardon neglects narratives in which the value and transformative power of genetic discoveries have already accrued.
We don't hear of successful screening programmes for newborns, or emerging gene or cancer therapies such as those for spinal muscular atrophy or Duchenne muscular dystrophy, sickle-cell disease or leukaemia. We don't hear about initiatives that have already had an immense impact in the diagnosis or treatment of rare and intractable conditions — such as those for lysosomal-storage disorders or congenital myasthenic syndrome. Also absent are voices of people who are affected by genetic disorders, or who work at the interface of clinical care and research, where the meaning of the human genome is continuously emerging. In my view, had we heard from these actors, the answer to Reardon's core question — what is the value of the human genome? — would have been powerful and unequivocal. The human genome has an ineffable value.