How do we create meaning after the genome? Such a profound question is at the center of the recently published book by
Jenny Reardon,
The Postgenomic Condition: Ethics, Knowledge and Justice after the Genome (University of Chicago Press, 2017). Drawing upon nearly a hundred interviews including with genetic scientists, social scientists, activists, lawyers and policy makers, Reardon constructs an engaging story detailing accounts of genomic projects from several field sites around the globe. Beyond her ethnographic accounts, Reardon engages with historical antecedents, such as the infamous Tuskegee study and the following Belmont Report, as well as philosophical discussions and insights from the likes of Hannah Arendt and Jean François Lyotard. The result is a reconsideration of genomics in a society vexed by inequality, and a push toward matters of science and justice.
Following the completion of the Human Genome Project, many subsequent genomic related projects (such as the Human Genome Diversity Project, Generation Scotland, and personal genomic projects like 23andMe) had to quibble with issues over labor, interpretation, cost, consent, and diversity. While many well-intentioned scientists hoped to be more inclusive and rebuke activist claims of “genetic colonialism”, these attempts fell through, due in part to problems of consent, structural inequalities, and conflicting points of view between scientists and potential DNA donors regarding the meaning and value of the genome. Other projects, such as Generation Scotland, had to deal with rising cost, and industry push toward more computerized, automated sequencing. For genomic researchers and investors, automation means reduced labor and reduced human error; however, citing Arendt, Reardon argues that such automation could jeopardize the very acts of meaningful speech that bring matters of concern, like the genome, into being. Instead, we should engage with a plurality of stories and gatherings around such matters of care and justice as they may come to constitute a new common world, including a transformed genomic science.
Chad J. Valasek is a Ph.D. Candidate in Sociology & Science Studies at the University of California, San Diego. His research interests includes the history of the human sciences, the influence of the behavioral sciences on medical practice and health policy, and political activism around science and the arts. You can follow him on Twitter @chadjvalasek.