The pathos of precision

Abstract

The papers gathered in this special issue offer us an important, empirically rich glimpse at on-the-ground efforts in the United States to realize the promise of genomics in the clinic. What they make amply clear is that two decades after the completion of the Human Genome Project, for most the benefits of the much-touted precision medicine remain – at best – uncertain. Sara Ackerman, for example, reports on a molecular oncology program at a US medical center where “[f]or most patients, genetic testing produces information that is of uncertain clinical significance and does not lead to changes in treatment.” Jennifer James and Galen Joseph detail the concerns of clinicians and investigators who worry that a genomics-informed breast cancer prediction algorithm will produce “personalized” screening recommendations that may not be the best for an individual. Kate Weatherford Darling et al. describe clinicians who gain a renewed sense of purpose from the introduction of experimental genomic testing to rural Maine at the same time that they wonder if they are building a system that will ultimately “contribute to unsustainable patterns of over-testing in healthcare.” Even when genetic data can clearly help – as Deborah Gordon and Barbara Koenig report in the case of pancreatic cancer – people are denied benefits by legal systems that prevent the flow of data to family members. Yet despite the lack of few tangible benefits, it is striking that in each of these articles we meet clinicians, investigators, patients and family members who struggle mightily in the present to make good on the promise of genomics and precision medicine. They do so within systems that work against them in fundamental ways: introducing time-consuming and soul-draining layers of bureaucracy; New Genetics and Society, 2022 Vol. 41, No. 3, 187–195, https://doi.org/10.1080/14636778.2022.2115352